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Impact of The IPRS

 

Since I started the IPRS I have received many interesting stories and letters of thanks, I have included a selection below. Maybe you recognise a similar situation/story and will realise you are not alone. I have tried to take out any personal information or any information that may identify the person... for privacy. Some emails you may find emotionally moving.

Hi,
I was diagnosed with PR some 43 years ago, and have suffered just about as bad as many of your letters.
I also found that the normal medical processes just have not a positive way to address this problem.
Therefore I decided to go it alone some 23 years ago, and pursue what I could that way.
To cut this long story down to size, I found a Doc that used to be a consultant in Guy’s hospital in the UK and was running a clinic for these sorts of problems.
We took many blood samples and sent some to the Bodybio lab in New Jersey, who confirmed that I was suffering with Heavy metal poisoning (tin and copper) added to which was a large quantity of dead cells (19.4%) also I had a depletion of cells, add to that the toxicity in the body and you get a pretty good picture.
So, I had a series of infusions at the clinic which were scheduled for 1/wk for 6 weeks. And the result was. Reduction of swelling in hands and feet and…everywhere else. to practically nil. The removal of fatigue, total. Mobility like I have not experienced for many, many years. …and a well being feeling that is just euphoric.
I am due to have further blood tests conducted within two weeks and will then be able to establish if all the indicators in the whole system that were corrupted are now heading in the correct direction.
For you info. read the article on phosphatydlcholine at the Bodybio site this may help in understanding part of what is going on. I will keep you posted on what happens. Right now some 8 weeks after starting the process I cannot state how the world has changed. A paradigm change.
Yours truly,
J. M. H*****.

2nd email

I can confirm from the latest blood test taken just five days ago, that the whole problem as described in comprehensive blood tests has changed dramatically.
I still have some minor improvements to make, but on a general basis I would say that the world has changed by something approaching 95%
As an example my ESR has fallen from 24 to 8, so there is now no inflammation going on at all.
After such a long period of suffering it just maybe that the process I went through would be of benefit to many others. Sadly you will only get it on a private basis.

J.

 

Any body wanting more information from the person who sent this email, please use the IPRS forum for further discussion.

 
  Updated June 2009
   
 

Hi.

 I am at a complete and utter loss. I have been suffering joint pain on and off for more than 4 years now.

At first when I went to my GP she thought it was Reynaud’s Phenomenon because of the swelling, coldness and the colour of my hands. Then sent me to the Rheumatology clinic. But as usual when I eventually got to the clinic I had no signs of swelling and pain free. I have had various drugs, but due to a dodgy stomach (losing blood, low iron etc) I am taking Lodine and Omeprazole for my stomach. One Dr said I had Palindromic Rheumatism, another said I don’t?! The one thing that has been said by them all is that I am anti ACCP antibodies positive. I was at the clinic on Friday and asked the Dr exactly what this meant but she didn’t answer my question and told me to look it up on the internet. My GP tells me not to do this.

This is getting me down. I would like to be told what I have wrong rather than the Dr thinking I am wasting their time as every time I go I am pain free. I have taken my husband with me on the visits as he has to comfort me when I am in pain. Has to carry me to the toilet and dress me. Would I have him doing this if I wasn’t in pain – NO!

Sorry. I just get annoyed.

Now that I have written this I really don’t know why I have. But I will send it anyway and see if you can help with my dilemma.

Thank you for taking the time to read this.

A*****

Updated April 2009 
Hi,
>
I am an occupational therapist. I have a client at the moment who was
diagnsoed with PR 5 weeks ago. Several years ago, she had a car accident and suffered whiplash, which she believes aggravated her condition badly (more
frequent attacks since, etc). Do you know of any research to back this up as
I am doing a medicolegal assessment of her case and I think the other side
will balme all her symptoms on PR.....

Kind regards

N****

 
 
   
 
In November 2008 after a holiday in Israel, my wife noticed a swelling on the back of her hand. Since then it has been diagnosed as PR. Each episode last 4 or 5 days and seem to be recurring every three weeks. She has no pain at all associated with the swellings which have been on the ball of her foot, her finger tip, knee, and wrist.

I know they say that there is no cure but what I am very worried about is the following:-

1. As there are frequent attacks does this mean she is likely to develop full Rheumatoid Arthritis in the near future or at all

2. Will pain be the next regression

3. Can anything be done.

4. Who is the leading authority on all this in the UK

Thanking you in anticipation of your early response,

Regards,
M******* W******** JP.
L********
 
  
After suffering flare ups for about four years that would last for two to three months at a time and move from one joint to another on almost a daily basis, I was referred to a rheumatologist who said I have PR. He prescribed the usual medications that would work for a while, then stop. I was working in a very stressful job during all of this too. I quit my job and lost my health insurance so was no longer able to afford the specialist. I have not been on prescription medication for over two years, but I am not as stressed either. I drink a lot of tonic water which contains quinine. I rarely have a flare up any more. I attribute this to my reduced stress level and the tonic water. When I do have a flare up, it usually seems to be triggered by stress or some other injury. For example, I took an unexpected fall last summer where I landed hard on my back. I suffered flare ups througout my body for about three months following. My theory is that when my body tried to heal itself, it triggered my immune system to start attacking itself (auto-immune). Just a thought.

One of the most frustrating things with having PR is trying to explain it to other people. If I tell them it is arthritis, they don't believe me because it is not the type of arthritis they are familiar with. It is also frustrating because this all started when I was 36. I am 42 now, and even though the flare ups are not what they were in the beginning, I am concerned about what my quality of life is going to be like when I am in my 60's or 70's, because sometimes the flare up are so bad, all I can do is cry. Ice and Activon arthritis pain reliever do help. At this time, I am in my third week of having it "live" in my neck and collar bone. It also spends a lot of time "living" in my upper back between my shoulders. Worst is when it is in my shoulder joints.

Long story short, my solution is: Take care of yourself. Stay in as good of shape as you can. Eat well. When my eating habits suffer, I also suffer. Avoid stress as much as possible.

S*****
 
 
   
 
Sirs,
My son was just recently diagnosed with RA but I can't seem to find out if PR is inherited for infectious.

Thank you very much for your help in this matter.
J****** P*****
  

My name is V**** R****** and the doctor is guessing I have Palindromic Rheumatism by my history and what has happened at different times to me.

For about 6 months I have been on Hydroxychloroquine 200 mg.  It has made a big difference and kept me from a great deal of pain and stiffness.  I still have days I get very tired.  Over all I am very happy with this drug until this weekend.

I went to pull my Christmas decorations from the attic and placing them on the floor I would be using them. My house has many floors.  This is a lot of steps taken and on little sleep.  (Normally in years past my knees and joints would become stiff and I would be hurting a lot  the next day.)  I then on the same day went Christmas shopping.  Again a lot of walking.  Felt okay the next day just a little tired.    Two days later I looked down at my legs in the shower and found bruises on both legs towards the inside of both legs below the knee cap.  These bruises were from two to three inches in length.  They were exactly in the same spot on the inside of both legs.  (This told me I did not hit myself by accident.)  I am worried this is from my activity using my knees.  Has anyone ever heard of this?  Can this Rheumatism cause blood clots?  As usual I called the doctor and can’t get a call back right away.

If you have heard anything about this or can give me any information can you write back?

I don’t have the internet at home so if you can e-mail back at ****** it would be greatly appreciated.

V**** R******  

 
   
 
hi my name is m*** w******, i have just been diagnosed with pr (i say just, its took nearly 7 years)

i have just found your site and noticed it is stated that pr has an unknown cause, well id like to give you my diagnosis

when i was 29 years old i took my very first plane flight (10 hours)  the next day i could not walk.  long story short 7 years later i get a diagnosis but still have been given no link to the flight.  i am no doctor so i dont know what the body is subjected to during a plane flight but i do believe this is why i am a sufferer of the desease.

 thanks for your time

 m*** w******

  
Hi Paul

Your site is very clear and helpful, especially concerning the advice
about support for joints in the lying position. I thought that lying
down should ease the ankle pain, but it really makes no difference, so I
will try out your tips. I was diagnosed just over 2 years ago, although
had experienced symptoms for many years. The rheumatologist wanted me to commence DMARDS but I really didn't like the sound of the side effects,
so tried Voltarol, but went back to the aspirin which I've used for
years. This can take the edge off it, but depends on the severity of the
flare ups.

Thanks again,

C*****, UK.
 

 
   
 

Hello,

In 2003 I visited my GP, due to swelling of my fingers on my right hand. The GP told me it was repetitive strain disorder. I did not doubt her at the time, the swelling and pain seemed to come and go.

Although in 2006, my feet, ankles, knees and hands swollen and became painful [whether swollen or not]. Upon going back to my GP, she referred me to the local hospital. I attended the Rheumatology clinic and had several tests but everything came back as 'normal', I even had a doctor at the hospital told me she didn't believe that there was anything wrong with me apart from depression!!!

I have pains, stiffness and swelling in my left hip, both hands, ankles and feet. The swelling comes and goes, but the pain is continuous.
My last visit [May 2008], my partner had taken photo's of my swollen joints which we produced to my consultant. she told me that she thinks I have PR. She didn't have any information that I could take home with me, I was told to look it up on the internet! I was prescribed Hydroxychloroquine Sulphate, to take with previously prescribed medication - Co-codamol and Etoricoxib.

I have been receiving incapacity benefit, i have been told I have to go for assessment or my benefit will be stopped. I am now worrying that it will be stopped if they do not witness the swelling.
I have just had my contract of employment cancelled, due to being off work for 13 months. I was a team Leader for supporting vulnerable adults to live in the community. It seems unlikely that I will be signed as fit for work, by my GP, but if it were to happen I wouldn't get a job in my line of work, due to the physical requirements. I am 37 years old.
I found your web site and found all the information I needed to know, so far. I must say your web site is wonderful.


E***, UK

Updated Dec 2008 

Hi,
I was just diagnosed after 4 years of wondering if I too, were a nut case. I had flare ups for no apparent reason .. different joints.... aches and pains with weather changes and the like. .. and in-between flare-ups, felt like a million bucks. I (Finally ) was referred to a Rheumatologist who listened and made the diagnosis.
I do better in warmer weather.. I can tell if there is going to be a barometric change. I will l hopefully be able to control the inflammation with Celebrex and use it for the shortest possible duration. I have been doing a lot of things RIGHT, like not getting overtired and continuing to do moderate exercise.. even when its really a pain in the arse.

A huge weight has been lifted by just being able to give whatever was going on A NAME.


Good luck !
H***** U***** M*****
Female~~ age 51
M********, C********* USA

 
   
 

Hi

After struggling for years with terrible joint pain in my left knee,
that always occurs when my hay fever is bad.

I have been to the doctors many times, but they have always said there
is nothing wrong, and always dismissed the idea of it being link to my
hay fever.

Finally today I was diagnosed with Palindromic Rheumatism.

Just like to say, thanks for creating this site, it has helped me
greatly understand the disorder.

Regards

B** S*******
N******, N******

  

Your site has actually shown me their is sun behind the clouds. I really really am not alone.

My name is C****. In August of 2007 I mysteriously
started having extreme pain in various parts of my body. After
viewing the pictures of different affected joints and limbs. it is
what I have been going through. A doctor recently informed me that I
have palindromic rheumatism. I hate the fact that this disease hits
whenever, where ever it chooses and literally cripples me for anywhere
from 3 to 10 days. I have spent time with canes, walkers and in
wheelchairs. I was so happy to read on ;your site that I am really
not crazy. I have attended my doctor for 8 months and was literally
told that if I quit drinking alcohol I will not suffer this plight. I
have not consumed alcohol for 14 years. The Doctor who saw me in
V***** *.*. made a diagnosis in 2 hours. He then involved another
doctor who had me administered with some detramextrol (close enough to
spelling). I was out of the wheelchair within 6 hours. I was amazed.

K** S****

 
   
 

Hi
I have just found your site, i have been a sufferer for many years and i have to say that its good to see i am not alone, the longer i seem to suffer the more i seem to be left with the affects of the arthritis. I have had an operation on my left hand and am waiting for the opp on the right one. I have a lot of soreness in my hips sometimes through walking, also my heals are very painful now. I have also suffered problems with my knees and my back (its the back that led the Rheumatologist to diagnose my problem).
I have found that tomatoes and strawberries affect me so bad i have stopped eating them which in the case of the strawberries is just awful, but the pain is a lot worse if i do eat them. I see in your site that you don't think food makes a difference but i have tried these things different times of year and different times of day and i have to say that they do make me worse. I am still trying to find any other things that may be affecting me as i am full up with drugs and there is nothing else i can think of doing. Also i am unable to work as i do not know when i am going to have an attack, the last one put me in hospital. Anyway enough of me, just like to say so far i have found your site interesting and have added it my desktop.

Regards

Mrs G*** M*****
A********

  

Dear Karin IPRS,

My husband suffers with PR. I have found the website really
excellent but just wanted to clarify about benefit because are you
still able to claim under the illness PR or do you have to put RA as
it hasn't turned into that yet i am pleased to say !!

Many thanks for your help,

Mrs D*****.

 
   
 

Hi my name is L****. I was diagnosed with Palindromic Rheumatism 2 and a half years ago after suffering periodic pain in my wrists for years that had then begun to be happening in my shoulders and finally one day in my leg so severe I could not walk at all. As I heard the narrator explain has happened to others I too would go the Arthritis Doctor after the event had concluded and subsequently was not properly diagnosed. At first I was treated with steroids and then began the Hydroxchloroquine, which has prevented any major flareups. I have had twinges or bouts of this same pain on a smaller scale and taking this medication, and I am now noticing twinges of pain in many others parts of my body. Two questions: 1) Is this common? 2) Is fatigue a symptom?

  

Hi Paul

Your site is very clear and helpful, especially concerning the advice about support for joints in the lying position. I thought that lying down should ease the ankle pain, but it really makes no difference, so I will try out your tips. I was diagnosed just over 2 years ago, although had experienced symptoms for many years. The rheumatologist wanted me to commence DMARDS but I really didn’t like the sound of the side effects, so tried Voltarol, but went back to the aspirin which I’ve used for years. This can take the edge off it, but depends on the severity of the flare ups.

Thanks again,

C*****, UK.

 
   
 

Dear Sir,

I am a physician Assistant and my wife has had these such problems for the last 10 years we have been married. She just turned 33 and this last year her "flair ups" have went from 2/year to 2/month. This made me stop telling her she was just a weakling and needed to exercise more to realizing this was much much more. Watching her pick up my baby with her forearms is truely an eye opener. Her labs and x-rays always negative and we never seem to be able to make it to the doctore for them to see it. Today we seen a Rheumatologist and he did not not miss a beat. He gave us the name and said we are a classic presentation and now we have spent the evening on your web site.

Your photos are most conviencing. We would love to share some of ours but we need to start taking them. Your photos are so amazingly simular to her "flair ups" that we are shocked it is not her (except for the hairy legs)

Thanks so much for your site and for helping us put a name to our problem. We are not crazy. She really does have a problem. Its funny but that actually feels good to know now.

J**** S********

  

I have just been diagnosed with PR after a year of severe flare ups and many years of what I can now see as mild ones. I am very lucky to have a rheumatologist and GP who listen to what I say.

Your web site is so helpful.

I am so relieved to have someone give my pain a name, it makes it more bearable somehow.

Unfortunately I also have Prinz Metal angina which definitely does not like PR!

With thanks

A***

A*** H******
D*****

 
   
 

Hi,

My name is J*** C****** and I would like some information on any known
Rheumatologist in A****** that is familiar with palindromic
rheumatism. I have been suffering with some condition that my doctors
can't diagnose since 2005. Today I went to an Endocrinologist for
some bloodwork results. Everything was normal(ACTH, RA, cortisol, ANA
comprehensive panel, tsh) The only abnormals were a slightly low
hematocrit, slightly high creatinine, and a very high sedimentation.
I have "flare ups" of intense pain. It started with my knee and
finger joints and over the past 3 years has continued to included
almost all my joints. I can be fine one day and the next I can't
hardly function because on the pain only to wake up the next day and
be fine again. I have started experiencing depression because of what
I have been going through. Even if there is nothing I can do to treat
this condition if I have it, it would be such a relief just to have a
diagnoses. It is easier to handle when you know what your up against,
but not knowing makes you doubt yourself and your sanity. Its hard to
feel someone believes what your going through when the doctors say
they can't find anything. The endocrinologist I seen today did give
me some hope. He said the elevated sedimentation indicates
inflammation in my body, but he just didn't know where or why. He
actually told me about the palindromic rheumatism, but he said it was
very rare and that I needed to see a rheumatologist for a diagnoses.
I live an hour away from two major cities in A******. H******** and
B*********. If you could give me any information on doctors here that
could help me I would appreciate it. You can email me at
*************.

Thanks
 

  

Hello,

I live in S********, **.  I have PR.  How can I help?  I have first hand knowledge of what PR can do.  I have had all the medicines and tests.  If I can help in some way get someone through this horrible sickness.  Please write

Sincerely.

 T**

 
   
 

Hi, I am a doctor who has just been diagnosed with PR and I would just like to congratulate you for an excellent website


A***** C*****

C***** d*****

UK

Updated May 2008 
Hello,

my name is C**** C*** and i was diagnose with PR in Feb 2008 by a rhumatologist in Hong Kong. after a previous diagnosis of Rhumatoid Arthritis in 1997 from an American Emergency Doctor from a positive RA factor; i have been puzzled by the infrequent reoccurences of PR. this past Feb, on a trip back to Hong Kong for family, it was the worst ever flare up! started with my right side of leg swellen 3x regular size , migrated towards left knee and eventually both ankles and feet. i looked like the pillsbury dough boy from legs down! very painful, can not walk or put pressure on the ankles. i was very frightened! after 1 week of rest, i broke down and went to a doctor. previously, i had flare ups caused swelling in both my leg tissues. usually when i walked excessively in very hot and humid heat after a plane ride, sometimes, it would flare up. but, it was always manageable and disappeared after 1 week. this time, the Chinese rhumatologist, after some
tests to rule out RA factor elevation, finally gave me the RA diagnosis. it is apparently very common in Asians in their 20s and 30s. that is when i went onto the internet and found your website via Google search. THANK YOU A MILLION TIMES and may Buddah shine its blessings on you and your family!

i have since cut back on caffeine in diet sodas. i never drank alcohol because it makes my face red and i get really sick. i have always avoided red meat because i didn't grow up eating it in Taiwan. however, i did find that if i ate asparagus or tomatoes, it makes it worse. i know RA is different for everyone; however, i would like to be connected to Deborah from reading her story on your website to ask what other foods will help prevent a flare up? so far, i have followed a similar Gout prevention diet and that seems to help.

With Deepest Appreciation,

Ms. C**** Y*** W** C***
 
   
 
Hi, my name is N**** Y****. my wife C****** has had Palindromic Rheumatism since about 1999, although it has only been diagnosed since 2005. in the beginning they treated it with steroids, which brought on type 2 diabetes, so now she is suffering from both. in recent months the condition has really turned nasty, and at this moment hardly an hour is going by without her being in pain. whilst writing this her thumb has suddenly swelled up and is really hurting. my question is this: at the moment i am off sick myself, and a good job as well because if i was at work she has been incapable of looking after herself, being bed bound for some of it. can we apply for disability living allowance and can i apply  to be her carer? i feel that no one seems to want to be bothered to want to help, so i would be grateful to hear of any help you know that is available.

Many Thanks,

N**** Y****

Karin, Our Benefits Expert is dealing with this email.

  
hi, is there any evidence of this type or rheumatoid arthristis being linked to crohn's disease.
 
   
 
Dear Paul

Thank you very much for all your efforts and your web site.

I have had PR for an unknown period of time, being that I always thought it was something else. The mystery was finally solved when I read the information about PR on your web site. Finally knowing what I am experiencing has settled my mind greatly and ended my frustrated search for a cause of my inflammation. My symptoms are very typical so the diagnosis was easy. I was very interested to see that most had seemingly searched for a dietary cause as I had. I was sure it was something I was ingesting was the cause. Now, I no longer an that concerned and just go about living and very much back burner any inflammation as it will resolve itself with time. I personally find that activity that will stimulate blood flow ( walking or swimming) coupled with stretching and maybe ginger capsules helps reduce and end the flair ups. Thank you again your efforts have been of great help.

P. S. I am not a friend of Paypal, but if you send me an address I will be glad to forward a donation in support of your efforts.

J*** D* C*****
 

Making a donation to the IPRS is easy and safe with Paypal, all you need is a debit or credit card and follow the Paypal instructions. (You don't even need to join Paypal, to make a one off payment . The IPRS incurs the charges out of the donation so it doesn't cost you anymore for making the donation. Thank you for any Donations made.

  
Hi just wounded if this can be hereditary as my dad has got it.

Thank you.

Mrs. C*****

 
   
 
No need to email me back. I just wanted to thank you for the site.
I was diagnosed with PR over two years ago and had been in remission
until this past fall. My flare-ups are two to three a week now.
This web site is the most informative I have ever found regarding
this disease. Keep up the great work!

L***** P*********
H********, I*******
United States of America
 
  
Are there any support groups in New Jersey?

Thanks,

L***

 
   
 

Firstly, I would like to say how happy I was to have found your site. I was diagnosed with PR in February of this year while being treated for what had been previously diagnosed as frozen shoulder. I thought I was suffering with various different joint problems over many years, from my ankle to my wrists and shoulders, but of course now realise it was PR. I have started a diary of how often PR strikes together with marks out of ten as to its severity, my diet at the time etc etc. if this type of knowledge is of any use to anyone who should contact your site, then I would be very happy to send it to them. I have added some photos which again you have my permission use should you want to. (You can see the photos under Deborah's Story)

Thank you again for your site,

Deborah

H************

England

  
Hi, I'm wirting you from Rome, Italy. Sorry for my bad english.
I write you because my friend (53, I am 50), suffers PR. Till now only massages. He is a very "proud" man, so "ancient", he's shame about his paines. I want to ask you if you know about some italian center, specialized in PR... do you know? Can you help me?

Thank a lot

R****** C****
 

 

 
   
 
***
***
***
  
***
***
***
 
   
 
I have recently been diagnosed with Palindromic Rheumatism, but I have a question for you. Do you (or anyone) you know of get a red/purple rash on the joint after the red/pain/hot sensation. I’ve attached a picture that might help explain what I’m talking about.

Thanks.

K******
Updated Nov 2007 
Paul,

Thanks for the website. We have a newly diagnosed patient and your site is a great teaching tool.

R**** B******,
Nurse Practitioner
 
   
 

Dear PR society,

I have been recently diagnosed with PR and have no one to talk to about it. I recently found your page so I am writing.

I have been at my wits end with these symptoms for years and now have just started to work with A rheumatologist.I could just use some support with this. A lot of my friends think I am crazy, because I don't look sick all the time. But the pain is constant and I haven't yet found anything to help with it yet.

Thanks,

Angie

  

Hello,

My name is S**** B*** l. I am a 46 year old male with PRA. This disease is the pits and I would like to be able to promote awareness of this thing. How can I assist in spreading the word here in Australia?

People need to know how this impacts on ones ability to lead a normal fulfilling pain free life. The more employers and Governments know about this the better the understanding of what sufferers have to live with. With a greater empathy people may become more tolerant of this disease and towards sufferers. 

In fact the general medical profession is mostly in the dark over PRA, except for specialist Rheumatologists. Education is the key so once again please help me to help my fellow sufferers here in Australia. 

Cheers

S**** B***

 
   
 

Hello,

My husband was diagonsed with RA in Dec of 07.  He is currently seeing a RA specialist.  One day he had such a horrible flare up in his knee he had to go to the Dr's and have the fluid drained from it.  They were able to at that time tell him that he had PR. They have changed his meds twice.  They are trying to figure out what works best for him by narrowing it down. He is currently taking Sulfazine.  He has had more episodes to date than normal. 

It seems like the episodes come much more frequently.  Almost everyday it's crippling and just frustrating to watch my husband in such agony.  I read somewhere that Mangosteen ( a natural blend of juices) is known to be helpful.  Are you familiar with this juice?

My frustration is with the RA specialist.  He seems so laid back about my husband's condition.  The Dr tells him well we can try this drug see how it works.  If it doesn't work then he was told that the Dr will continue to go thru the list of them.  Then he will schedule my husband to been seen again in 2-4 months.  It doesn't seem to matter that the flare up's are so painful and are happened more frequently than ever.  It's seems to be everyday the PR ends up in a different part of my husbands body. 

Is there a different route to travel?  Is there a specialist that anyone can recommend?  I feel like we are wasting time. 

Thank you in advance for your time. 

Sincerely, 

S**** *. G*******

  

hi

im sorry to bother you ,,,ive just been diagnosed with palindromic rheumatism and after reading the information on your site i now know im not the only one suffering in agony all the time .mine started as a child and remained in my neck going stiff and locking into one position and 3 years ago it started in my wrists about once a month then twice a month untill now i get it all over my body ,,my hips,feet,ankles and wrists are the most affected ,ive been on lots of diffrent anti inflamitories and none help me at all ,im now on naproxen at 500 mg twice a day and starting a new drug after councilling in feb next year as there is lots of side affects ,,,i was lucky in one way becouse my wrist was badly swollen when i seen the specialist and after an hour of examination and loads of questions they diagnosed me ,i hadent even herd of this desiese ,,everyone thought i was just getting lazy and thats depressing on its own with out all the constant pain im in .how many people in the uk have this do you know ?
anyways thanks for lisening as no one else understands what i go through every single day and with a baby of 14 months and on my own i find it very very tiring and depressing .
 

mrs h***

 
   
 

Hello 

I wonder if there is any known awareness of a link between PR with DVT?

Thanks

T***** C*****

  

I have just discovered your website and am relieved that I am not going crazy.  I am too ill and in too much pain to go into details at the moment but whilst I am enduring this latest cruel bout of PR I know that I am not alone.  I can endure the pain, the isolation, the depression, the disability etc. etc. but I cannot endure the complete lack of compassion and understanding I get from my husband and son.  They consider that this "illness" is a nuisance and really puts them out because "who is doing the washing, cooking, cleaning, bookwork for our business and working at our restaurant while I am lying in hobbling around the house or just lying in bed waiting for PR to just go away.  Their attitude is 1,000 fold more depressing than any physical pain that I can endure.  I find that I try to hide my attacks from them because I can't bear their disdain.

I look forward to joining the forum in the next few days (when PR passes again).  I would like to know whether anyone else out there has the same problem with family and how they cope with it.

I have tried to join forum but have yet to receive email instructions. 

Regards 

S**** D*****.

 
   
 

I couldn't believe there was a name for what I have. 3 years ago I went to a specialist on Rheumatoid arthritis. I had the aches and pains in my joints for years, off and on. Started out a year apart. Now it's been going through a lot in the last 2 years. I was amazed that my Dr. figured it out. It's been 6 months now and my medication is not working. I see him on the 18th of October but will call him tomorrow to see if I can get in sooner.

Hope to hear back from you, 

J****

  

Hello,

I was diagnosed with Palindromic Rheumatism a couple of years ago.  I can relate to everything on your website right down to every picture.  I had no idea what was happening to me the pain was incredible and the swelling and redness was unbelievable, I went to my Family Doctor who then sent me to a Specialist.  He diagnosed me quite quickly and prescribed Plaquenil I take two pills aday.  My life has changed I have the occasional day where I might feel some joint pain, but nothing compared to what I was going through.  Please let me know if any of you have tried Plaquenil, it is apparently not a good drug to be on.  It could cause blindness, I have to go to a Specialst a Retina Imaging Centre to check my eyes once a year to ensure that this drug is not damaging my eyes.  The pill takes approximately a month to really notice a difference, but my life has changed thanks to Plaquenil. 

Please let me know if their is another drug as effective, and let me know if people you know are taking Plaquenil.

Sincerely,

C**** F******

 
   
 
Hello, my name is d**** and live in the states, and glad to have found this site, almost put a tear in my eyes, I was diagnosed with Ra, but yet as the doctor said I am a rare case, as 2 positive tests results, of ccp 235 and a Ra titer test of 325...both very high, yet my only complaints is that of what you described, I returned 2 yrs later (2 days) ago to find him say he thinks I have what's called Palindromic Rheumatism...as I have tried to explain how it peaks ect and disappears as fast as it came, never on 2 joints at once..ect..I never have gotten swelling or red ect...with any episode, so I always thought the doctors here thought I was nuts for being in such pain yet showing no signs of distress in the area...I guess all I could do is pray in don't turn into something more debilitating, and I will pray for you as well, kind regards

d****

  

Hello!
I was diagnosed  seven years ago as having palindromic rheumatism (PR). 
Since then, the frequency of swellings has increased.  There is no sign
of RA.  Plequenil was ineffective.  I have read that colchicine is
sometimes used as a treatment for PR.  However, none of the three
rheumatologists I've seen even mentioned colchicine, which I know is
normally used for gout--which I do not have.  Do you know PR patients or physicians who are experienced with the use of colchicine? 

Thanks.

N***** *. D**

 
   
 

I have had PR for 46 years but was only diagnosed 2 years ago. Bee venon taken orally seems to nearly stop bad attacks.

I plan to contribute what I can to your site.

D***** L******  A***** US

  

I am 52 years old and was just diagnosed with Palindromic Rheumatism.  I would line to know if there are any foods I should stay away from or any foods I should be consuming.  Also, I would like to know if exercise helps increase or decrease my pain level during an episode. 

Thanks

 
   
 
Hi

I have just been diagnosed with PR after several months of acute episodes of swollen, red and extremely painful joints.

Joints affected so far include shoulder, knee, wrists both feet and hands.

Can you tell me if the tendons are involved in this disease as I seem to get a red tracking along the tendon?

I know pain is unique to each individual however is it typical to be so severe during the first 12 hours of a flare up? Nothing seems to alleviate this pain during this period and I dread the prospect of another flare up.

My RF and CRP are raised.

Many thanks

P***
  

Hi,
 
I was diagnosed with PR about 4 years ago.  I have no joint damage.  My ESR is usually in the 80s, and rheumatoid factor values range from the 600s-900s.  My flares can last for days and weeks.  It seems as though it has to take a course around my body (fingers, hands, wrists, knees, feet, toes, and hips) before it leaves.  Even when the flares clear, I still have a low-grade type of pain that never goes away.  My rheumatologist thinks I also have fibromyalgia. 
 
Right now, my rheumatologist has me on Voltaren and Plaquenil, and this doesn't seem to help at all.  Once in a while, I'll take prednisone, but the weight gain is awful.  My rheumatologist has suggested that I try Enbrel, but I'm scared of the lymphoma side effect.  I know this is rare, but I do know someone who developed lymphoma while on Enbrel.  What do you think about this medication?  I've also heard of a medication called Lyrica.  Any medication input you can give me is greatly appreciated!

V****

 
   
 

Hey,

I am so glad I have finally found your site. My name is J**** M******** I am a 27 year old Financial Advisor in M**** who has been suffering from PR for the last 7 years and have finally had it diagnosed properly in the last 3 months. I have been on a heavy diet of Vicodin, and Indomecethin (SP) and have finally been put on a steady dose of plaquenil (hydroxychloroquine) and it has seemed to reduce my frequency of attacks, it’s a 2 a day dose very easy to take. I am still unable to eat shellfish (being from M**** is very hard to eliminate) and most beer. However, I can have a glass or two of wine and a mixed drink again. This problem as my rheumatology Dr. in P******* mentioned is such an unknown disease that effects a number but a very limited number of people. I was diagnosed with Gout for 3 years and for the first 4 years they just called it a sprained ankle. When the attacks happen I am unable to work, unable to walk and only able to get around on crutches. I am 5’9” 210 lbs a bit overweight but I have no family history of any type of disease. I am so glad that I have found more people who are suffering in the pain as I am. My symptoms last approximately 3-5 days, and are a nightmare. Is there any information I can provide to you that would be beneficial. I have been looking for this site for a long time.


J**** M********

Updated Aug 2007 

Hi,

I wondered if I could contact Karin regarding benefits as my Husband has been diagnosed with PR and I wondered if there were any benefits available to him?

He is in full time work as a Postman but obviously when the PR kicks in it makes it impossible for him to work as it is centred mainly in his knees and ankles.

I would be grateful for any information that you can give me.

Yours sincerely,

J*** C*****.

 
   
 

Thanks for a very interesting page on this disease. Could you advise me where the podcast is from because it was also interesting and I would like to subscribe.

Thanks,

N***

Dr N*** I*****
GP Registrar
 

  

I was advised today that I have symptoms of PR. I have been struggling with this problem since Jan 3, 2005, it Began during a trip to the hospital with double pneumonia for intravenous antibiotics.

The intravenous antibiotic (zosyn with piperacillin) leaked outside of my vein and under my skin causing a golf ball Sized medicine blister, this was allowed to disperse under my skin and saturated the tissues underneath.

Three days later I went into something similar to the uncontrollable movements as depicted in the movie Exorcist.

Your pictures look all so familiar.

I read the volunteers bio’s and see hospital visits prevailed in the onset of PR. Example pregnacies!!!!

I was curious if anyone else had IV infiltration prior to the beginning of their living nightmare.

I couldn’t work 7 months after my trip to the hospital so I had plenty of time to research, I am totally amazed The number of Rheumatologists and web research I have not came across this website.

I am attaching a few pictures I have taken in the last 2 ½ years.

I was prescribed a low dose of prednisone and plaqueril (used to offset the side effects of the prednisone) I also take 375mg of Naproxen as a daily deterrent.

May God bless you for starting this website, this gives me hope I haven’t had in a long time.

Thanks M***

Just a few pics I have plenty it’s sad to say. Please reply. I will try to get in your forum I have some questions for people suffering as I.

Please reply to let me know you received this email.
 

 
   
 

Thank you very much! I was diagnosed 4 years ago and I FINALLY understand what PR is. Thank you! Thank you! Thank you!

B G******

 

  

hi my name is n** im so glad that i found this web site i have felt i was the only one on earth with this ..... i thougth my doc was crazy i felt so depressed cause i did not understand this untill now..i was really sick with the flu off work 2 weeks i could not walk even or pick my head up... and there it was full blown pr....thanks for the info..

 
   
 

Hi

I've found the IPRS site and the forum very helpful and don't feel I'm crazy with my invisible pains anymore.

I would really like to join the forum but not sure what to do next to register.

Hope you can help

Bye for now

S****

  

I have just found your BRILLIANT web site, everything you have written about regards symptoms and feelings I have experienced, even to the point of pleading with my doctor to refer me to a psycologist as I didn't know what was happening to me.
I am a "fifty-something" married mother of two grown up sons, who never had any serious illness until my PR came along, then I thought I was dying!!!!!
Now I've read your web-site I actually laughed because I no longer feel like I'm a malingerer.
If only the people I work with could read all you have written on the subject they would understand what it is I have. ( They can't see it, so it can't exist)
I will go to bed and sleep well tonight knowing I'm not alone should my joints play up ......although I had a good flare up last Thursday and don't expect one this week!!
THANK YOU THANK YOU for writing all about ME
M******** J***
 

 
   
 

I have symptoms that may be palindromic rheumatism but how can I know? What tests should I ask my doctor for? The only joints that are swollen are my knees and there is no redness or warmth. Are those knock-out factors?
C****** C***
 

  

Hello

I am female, 39 years young and single with two children.

Three years ago, I was diagnosed with fibromyalgia, but that only really affected my muscles and ligaments, but now my joints are involved.

I have been suffering on and off with pain in my joints, ramdom rashes and swelling with minor rashes on my hands for quite a while now (2 months). One minute i am in pain with swellings and rashes, next minute the rashes and swellings have subsided. I am still in pain however.

I am nowwhere near as strong as i used to be. I was once able to get a double bed down stairs, out into the garden shed. Now, i my arm shakes just holding a full kettle of water. I can only assume that this is due to the pain in my shoulders, wrists and hands.

I have just given my fourth blood sample (yesterday) and to date, absolutely nothing is conclusive.

Every time i have been to the doctors regarding the swelling/rashes, there has been no evidence of them at all. I am sure they think that it is all in my head as I have currently been perscribed anti-depressants, this was the first time i went to the GP about it. On my 4th visit to the GP i was prescribed Naproxen, this has played a minor difference, but still the pain persists, the rashes and swellings come and go as they please.

I am desparate to have my ailment diagnosed so I can finally put a name to what I am feeling and hopefully this obliterate my depression. Not knowing is a 1000 times worse I feel.

Many thanks for reading this email and I truly hope to hear from you at your earliest convenience.

Yours faithfully

J**** K***
 

 
   
 

Thank you for having a website. I finally , after 4 years found a Doctor that found out what I have. I will find out more on you website and will probably mail you back soon. J**** from E*** h*****, WI
 

  

Hello,

I am not sure if you have had anyone mention natural remedies but I tried it and it worked.

I was diagnosed with PR over a year ago and was put on all these medicines and given a very sad outcome. I had been having symptoms for 4 years before I was finally diagnosed.

Any way. I decided that there was no way at the age of 26 my live would be like this. So I went to a Natural wellness center that does mainly chiropractic work but he helped me to get off ALL the meds I was on, including birth control and antidepressants. I have been seeing him 2 times a week for 11 months and have had no symptoms! I had some pain and slight swelling one day and went to see him and the swelling went down instantly and the pain was gone. I have had NOTHING since. I am slowly getting onto a less frequent schedule of seeing him and hope to be down to once a month by the end of the year. Since I started seeing him I have changed my diet as well to include 75% organic/natural foods. I have also noticed that other issues that I had, like asthma, have also been significantly reduced.

I hope this brings hope to you and to others in our position! Good luck!

J****** K**

 
   
 

I've recently been diagnosed with PR. It is thought that my pregnancy triggered it. My question is regarding the risks of another pregnancy. Do you hear from many women who developed PR after pregnancy, and then went on to another pregnancy? I'm interested in how they felt after the next pregnancy...did they feel like their symptoms were the same, better, or worse? My doctor says pregnancy will not make the PR worse, but I am concerned.
I would apprectiate any info you have regarding this topic, since there doesn't seem to be much info available.
Thank you so much!
L***** K*****

Thank you for your response, and I will join the forum as you've suggested. It seems as if your website is about the most informative I've run across so far. ..THANK YOU!!!
L*****

  

Hello,

My name is T*** F***** and I have been diagnosed with PR. The only thing that seems to control the swelling and pain is predisone. They Dr's are trying to get me to go on a long term dose of Methyltrexate.....which I am not doing. I am otherwise a very physically fit person of 35 years of age who hikes and windsurfs. This condition is wearing me and my family down. I have had the condition for 8 months now and have gone through umpteen tests all showing that I am fine. I am happy to find your site as I feel very alone with this horrible condition and the Dr's just seem not to believe me!

T*** *. F*****
Retail Store Supervisor

 
   
 

Hello, My husband is suffering from Palindromic Rheumatism. He is currently going through an episode of frequent attacks in various joints. Is there a newsletter that you can send him or articles to inform him. I’m thinking it may help him get through this. He has been an electrician for 40 years and hates when this affects his work.
W****** N***
M*******,

  

Hello, My husband is suffering from Palindromic Rheumatism. He is currently going through an episode of frequent attacks in various joints. Is there a newsletter that you can send him or articles to inform him. I’m thinking it may help him get through this. He has been an electrician for 40 years and hates when this affects his work.
M* N***
M*******

 
   
 
 
  

Hi,

My name is R****** I am 43 and I have had joint problems for about 15 years. They are very sporadic but when they attack it usually takes me out for weeks. My last one was mid January and I was off work for about five weeks in total. The Dr at my practice finally referred me to the Rheumatology Department and I went there today and the Dr says that I have PR. After all of this time it is quite a relief to have a name put to the pain which I used to describe as like having chronic toothache in your knee.

Unfortunately due to the amount of time taken from work (I work for Royal Mail, I am a Postman) this triggered the official warning procedure and much to my disgust even though I had Drs notes etc my line manager proceeded to give me a first stage warning. He said that this would hopefully get something medically sorted about it but I can't see where he was coming from on that one. Unfortunately in this warning system I have no chance to appeal.

After talking to the Dr and finding your very informative web site it is nice to know that it is not just me and I totally sympathise with any other sufferer.

Best wishes,

R****** C*****

 
   
 

I think I might have this Palindromic Rheumatism.

I have been having weird symptoms since August 2006. It started in one finger (left forefinger) and then traveled to other joints. Sometimes my muscles are crampy. Often my tendons are inflammed (particularly thumbs, wrists, medial epicondyle, fingers). A flare up will usually be very strong for a few days and then taper off over the next two weeks. When I am having a flare up, I will typically have a low grade fever in the first few days and feel "sickly." The pain can be crippling. But sometimes the pain is controllable with Tylenol.

The affected joints will typically be swollen and stiff but there is not much redness. Usually it is my MCP and PIP joints, wrists, my left ankle, and my 1st MTP joints in my feet. Sometimes I have symptoms in my knees, shoulders, elbows and my left TMJ. A few months ago, my TMJ was in unbearable pain. Now it is usually fine but clicks and pops a lot.

Depression always accompanies the pain as I usually feel crippled and am afraid that "this time it might stay." It always leaves though. Then I feel like "maybe it won't come back." But then it does. I have had 4 or 5 flare ups since August. Usually about every 4-6 weeks. My last one started on Feb. 16 and ended Feb 28. My first rheumatologist appt was March 1. She could not observe anything since I was mostly fine. That's my luck. I have been fine since except for minor discomfort that typically won't last more than an hour or so.

All my blood tests have been negative. A hand x-ray revealed no joint damage. As far as the doctors know, I am a hypochondriac. However, I have been diagnosed with "possible rheumatoid arthritis" since the symptoms are kind of there and kind of not.

I have scoured the internet trying to figure this thing out. Your website intrigues me.

Thanks for putting the information out there.

C****** M********
B**** V****, A*******, USA
 

REPLY

Thanks. I saw the pictures on your website and my joints have never looked like any of those. It is possible I just have RA that has not graduated to the everyday thing yet. I will start keeping a diary as you have suggested and will take pictures of the swelling since my doctors keep missing it (I do not have swelling and redness like the photos on your website. I feel terrible for those people).

You don't have to write back again. I appreciate that you already did and I assume you get a lot of e-mails.

Have a great day!!

  

Hello
Thank you for having a website. I finally , after 4 years found a Doctor that found out what I have. I will find out more on you website and will probably mail you back soon.

J**** from E** H*****, WI

 
   
 

Hello,

I am not sure if you have had anyone mention natural remedies but I tried it and it worked.

I was diagnosed with PR over a year ago and was put on all these medicines and given a very sad outcome. I had been having symptoms for 4 years before I was finally diagnosed.

Any way. I decided that there was no way at the age of 26 my live would be like this. So I went to a Natural wellness center that does mainly chiropractic work but he helped me to get off ALL the meds I was on, including birth control and antidepressants. I have been seeing him 2 times a week for 11 months and have had no symptoms! I had some pain and slight swelling one day and went to see him and the swelling went down instantly and the pain was gone. I have had NOTHING since. I am slowly getting onto a less frequent schedule of seeing him and hope to be down to once a month by the end of the year. Since I started seeing him I have changed my diet as well to include 75% organic/natural foods. I have also noticed that other issues that I had, like asthma, have also been significantly reduced.

I hope this brings hope to you and to others in our position! Good luck!

J****** K**

  

I've recently been diagnosed with PR.  It is thought that my pregnancy triggered it.  My question is regarding the risks of another pregnancy.  Do you hear from many women who developed PR after pregnancy, and then went on to another pregnancy?  I'm interested in how they felt after the next pregnancy...did they feel like their symptoms were the same, better, or worse?  My doctor says pregnancy will not make the PR worse, but I am concerned. 
I would appreciate any info you have regarding this topic, since there doesn't seem to be much info available. 
Thank you so much!
 

L***** K*****

REPLY

Thank you for your response, and I will join the forum as you've suggested.  It seems as if your website is about the most informative I've run across so far. ..THANK YOU!!!
L*****

 
   
 

Hello,

My name is T*** F*****  and I have been diagnosed with PR.  The only thing that seems to control the swelling and pain is predisone.  They Dr's are trying to get me to go on a long term dose of Methyltrexate.....which I am not doing.  I am otherwise a very physically fit person of 35 years of age who hikes and windsurfs.  This condition is wearing me and my family down.  I have had the condition for 8 months now and have gone through umpteen tests all showing that I am fine.  I am happy to find your site as I feel very alone with this horrible condition and the Dr's just seem not to believe me!  

T*** *. F*****

  

Goodmorning, I am a dutch woman seeking for help.
I found your website a few days ago and it was a blessing!
my appologies for my English writing.
I believe my 16 year old daughter suffers from Pr.
she started having pain since she was 8 years of age.
We have seen about 10 doctors since and no one knows what she has..
everytime she has to go to the doctor the pain seems to fade.
Now I have read your site things fall in places, it is completely her story.
I do have a question, how can we make the doctors in The Netherlands aware of this disease?
The Doc she is seeing now never ever heard of it! and he is an immunologist.
The problems are affecting her life very much, she can't write or learn at the moment, but sometimes it is only a few hours and sometimes it lasts a week.

Do you have any tips for us, I can't force the doctor to read this site, if I read the Dutch site on this topic the information is very little.
she suffers from shoulder pain, vinger, hip, feet, jaw, earshell, toe, back etc.etc. actually every join in her body. even on places you'd never expect a join!

This is the first time in 8 years we recocnize EVERYTHING..
She is not strange, weird or different, it has a name..

Please help us to get a diagnose or to make the Dutch Doctors and reumatologist aware.

Thanks for reading this, it is a cry for help.

tips are more than welcome.
very kind regards,
J**** K*****
 

REPLY

Thank you Paul, I'm sorry about your hands!
do you mean the symptoms leaflet?
I will do that!
I also will spread the word, it is bad no one in Holland know about it. even in the best hospital the doc. never heard of it!!
The forum is fantastic, please keep up the good work.
it is really a blessing to know that you are not the only one.
does that 16 year old child read the forum too?
I am very curious about that story.
thanks again and if I can do anything in Holland just let me know ;-)

best regards,
J****

 
   
 

Hello
I just wanted to say thank you for having such a wonderful website. I have not been diagnosed with Palindromic Rheum but my Dr. mentioned this dx and I an shocked of what I just read. I have been suffering off and on for 5 years now with mylaiga's, complete body pain, fatigue joint pains and shooting pains which just comes and goes. All blood tests are normal with an exception to an elevated cpr and elevated white blood count. Not to mention many Rheum Doctors who just don't what to dx and send me on my way. You give me hope.

Thank you again,
M******* D*******
H******, FL

 

Hello,

Can you help me, as I understand you cannot give a diagnosis through email I would like some advice.
Last Friday when I awoke I was covered from head to toe in a pinky red rash and was swollen as well. This rash lasted for three days and the swelling gradually susidided but is still around in my ankles and feet, all my joints were and still are painful. My doctor told me to keep my fingers crossed (I thought that was quite mean as they were very painful!) and didn't seem to want to give me anything for the pain, swelling or my concern.

What can I do and where can I go for a proper diagnosis to either confirm or rule out PR?

Kind regards

C**** G********

 
   
 

Hi

I will like to know how long will it take for the disease to progress to a
stage where it is difficult for the sufferer to maintain a full-time job?
Does taking anti-inflammatory drugs & omega 6 help to retard the progression
of the disease? Do jogging accelerate the progression of the PR to
Rheumatoid Arthritis?

Thanks
M***

   

Hello

I was very happy to see that there is a homepage on Palindromic Rheumatism. Thank you so much for doing this.
I have an acquaintance, he is about 59 years old, and he has Palindromic Rheumatism since 6 years. He could no longer work, because the attacks came more and more frequently. He is Italian and had been working for 35 years in Switzerland. He was paying during all these years for the Swiss Invalid Rent. But in Switzerland, they will not recognize this illness. I know however that for this person it is impossible to work, because after any even small effort the pain is so strong and the hands swell much, which prevents him from doing anything and the pain can last up to one week or more. This man, Mr. B*******, has an invalid son and two daughters, who are still at school.

I would like to ask you, whether in other countries the Invalid Insurance pay a rent.

Sorry for my English. I hope you may understand what I am writing.

We live in a **** people counting village in the G***** part, but at the F***** border, about **km from B****.

On the photograph, I see that you are young and are also suffering of this disease. This is very sad. I hope and wish that you may recover of this illness.

I would be very pleased to receive an answer from you.

Thanking you, I give you my best regards

 
   
 
Could I possibly ask if anyone has had the feeling as if they have been kicked in the crotch area. I get this quite often. This past fortnight it started off quite tender there, then I get the usual sciatic pain in the right buttock and down the right leg. However over the fortnight the sciatic pain went, the crotch area got tender and then my left leg from the top all the way down became quite painful including the crotch area. I felt as if my leg had a tight band round it (no pain in the left buttock like sciatica), it was a numbing pain. Very painful to sit on the left side and especially on a hard seat like a toilet. I had to go to the toilet sitting on my right side to save myself being in pain on the left. Then as the pain starts to go, it is like I have had a good kicking in the crotch and now my body is dealing with the pain and you start to come down the pain barrier until it is gone. That is the only way I can describe. Light pain mounting to extreme pain and then coming down as if you have been on drugs and you are slowly coming out of it. I was wondering if anyone else had also gone through this experience.

May the best of your past be the worst of your future.
All my love, E**** xxxxxxxxx
   

I had no idea this web-site existed. I have had PR for 25 years and at the
beginning thought I would be in a wheel chair by now. I have had the
greatest difficulty persuading my GP that such an entity exists and my
rheumatologist has treated it as he would rheumatoid arthritis. It was
tremendously heartening to discover that other people were having the same
symptoms as me.
How can I get on your forum to share my story and to see how other folks are
dealing with it. I would be glad to make a contribution or whatever is
necessary.
By the way I am not an MD. I have a PhD hence the title below.
G**** F****

 
   
 

Hello,

I just came across the IPRS website, and had to write to say Thank You! I was diagnosed with palindromic rheumatism about 2 years ago, and have had difficulty finding information about the disease. It is somehow extremely helpful to know that many others around the world suffer from this odd and unpredictable pain. My story thus far sounds much like the IPRS founder's, Paul, with every joint in my body having been affected at one time or another, and periods of remission, where the hope is that it "just went away on its own." Again, thank you for this wonderful website, and I hope you are encouraged to know, as I am, that there is another who literally "feels your pain."

God bless,

D*** W*****

M************, USA    

   

Hi Paul

It’s a few months since I discovered your website. I have been watching from the wings and regularly reading the forum “chat”!! I have to use my husbands e-mail address because mine is work related and this is too personal a matter. This is my story.

My name is S**** J***. I live in G******. I am 46 and married with two children in their twenties. I have one grandchild. I work 4 days a week as an Office Administrator. I had to go part time due to PR. Nearly three years ago, at Christmas, I hurt my hip (I thought). The pain became so severe over the next two days I eventually went to A & E for help. Pushed in a wheelchair by my daughter and laughing helplessly at the insanity of the situation, nobody of course, could tell me what was wrong.

I recovered and had a niggly hip until February 2005 when my ankle “went”. Then my upper spine and neck quickly followed by my shoulder flared up painfully. My hips, each in turn, gave me pain. My toes ached and my finger joints throbbed. I was very stiff, had a sore throat and felt constantly like I was coming down with the flu. I was also anaemic.

I am very lucky to have a good GP. When I saw him for the second time that year with joint problems he took many blood samples and referred me both privately and to the NHS.

At my first appointment I was diagnosed with PR. I am very lucky. I was put on Plaquenil and improved within weeks.

At the moment I am having more frequent flare ups. My knee is the latest new joint to flare.

Either side of my body can be affected and I usually find that when I have had a bad flare in a joint on one side, the other side seems to “join in”, but to a lesser extent.

I have asked my husband to type this because I have had tendonitis in the past and try not to type at length.

In this account I am missing out a large amount of detail. I am giving my story so that I can be added as a statistic and give the information so that it can be accessed by any professionals who are collating information on PR.

S**** J***

 
   
 

To whom it may concern.

I was just looking for some info on the web and I came across your web site.Very good site for those with this terrible diesease. Myself was diagnosed with this as well.In April 2005 it all started two weeks after coming back from the Dominican on a vacation. While as was at work my left hand thumb and forfinger started to swell right up.I couldn't think of for the life of me how I hurt myself.The following day it went away but appeared on the other hand .So I wondered what the dickens is going on here.So off to the doc I went and she didn't have any idea either as to what was causing this.So a week later its still travelling to different areas everyday so went back to see her.So she sent me to a tropical diesease doc and after tons of blood work and around a dozen trips he also had no idea .So back i went to the family doc and she sent me to see a Arthritis Doctor.Well after 15 minit check up she tells me I have Palindromic Rumitisum.So she put me on some pills that didn't do anything at all,and so after three weeks of trying i am now on crotches.Back to the family doc and she put me on some other kind of pills that didn't work either. So back to see that doc who diagnosed me with palindromic.What she told me was very interesting.She said she once had a woman in her early thirtys who has the same thing and came in with a swollen wrist ,so she made an appointment the following day to have the fluid removed and sent to the lab.She also had a 44 year old man who had all the same symptoms as me also had the fluid withdrawn and sent to the lab.This man was sent for a cat scan and they found a tumor on his chest bone and when they removed this tumor all his sysmptoms dissapeared.
So off I went for a cat scan. Results came back as a cyst on both kidneys ,then they sent me for an ultra sound
No signs of tumors anywhere.So back for another cat scan and they said that its nothing to worry about.So went back to that specialist and now we are gonna try something else.She wants me to stop taking my meds two days before my appointment so they can withdraw the fluid and send it in.Right now I take Arthotec two times a day which really helps alot but when the swelling gets so bad that it might effect me from workink Ill take one 5mg pill of predisone and within three hours all the swelling is gone. don't know if any of this sounds familiar to anyone who reads this but I do know one thing ,I won't give up and I must keep on fighting this because I refuse to live like this.My appointment is on December 12th. I will keep you posted as to what they have found.And again great site and i feel for all you people who have this. Thk God for a good medical plan here in O****** C*****
 

thks

J**

   

Hi,

I am a 36 year old British soldier who has suffered very regular over the past 12 years. It has only been after treatment from a Rheumatoly Consultant at ** ******* Hospital ****** for the past few months that I now feel I will be eventually diagnosed, next month. He suggested it to me, as I had never heard of PR, that I should enquire and investigate online. This after 11 years of being told I have everything from gout to dropped arches.

I followed his advice and PR is me to a tee. Attacks my feet, ankles and knees. Sometimes heat, discoloration and swelling whilst other times nothing just intense unbearable pain. Even my elbows!! No warning the pain just comes and goes, though, im my case often lasts months. I can not walk, climb stairs, get into or out of a car ( try doing this when you can't bend your knee!!) The pain is very,very severe. This has been documented.

I have had various scans inculding MRI. No bone damage shown. Though one showed shading on my feet that where painful. Again, this is consistant with PR.

Please advise....Do many or any of your known suffers have military or similar, say police men or post men (on thier feet all day), type professions? I would be interested to know if this type of active profession played any role in my condition. Personally I feel that there must be a strong connecttion between carringy heavy weight over ardous ground for a pro-longed periods. I woulkd be very appreiative If some one could advise.

As I will be leaveing the Army with this condition how do the DHSS see it??

Please help as I am very concerned.

Regards to all,


Best Regareds to All,     

 
   
 

Hi Paul

It’s a few months since I discovered your website.  I have been watching from the wings and regularly reading the forum “chat”!! 

My name is S**** J***.  I live in G******.  I am 46 and married with two children in their twenties.  I have one grandchild.  I work 4 days a week as an Office Administrator.  I had to go part time due to PR.  Nearly three years ago, at Christmas, I hurt my hip (I thought).  The pain became so severe over the next two days I eventually went to A & E for help.  Pushed in a wheelchair by my daughter and laughing helplessly at the insanity of the situation, nobody of course, could tell me what was wrong.

 I recovered and had a niggly hip until February 2005 when my ankle “went”.  Then my upper spine and neck quickly followed by my shoulder flared up painfully.  My hips, each in turn, gave me pain.  My toes ached and my finger joints throbbed.  I was very stiff, had a sore throat and felt constantly like I was coming down with the flu.  I was also anaemic.

I am very lucky to have a good GP.  When I saw him for the second time that year with joint problems he took many blood samples and referred me both privately and to the NHS.

 At my first appointment I was diagnosed with PR.  I am very lucky.  I was put on Plaquenil and improved within weeks.

 At the moment I am having more frequent flare ups.  My knee is the latest new joint to flare.

 Either side of my body can be affected and I usually find that when I have had a bad flare in a joint on one side, the other side seems to “join in”, but to a lesser extent.

 I have asked my husband to type this because I have had tendonitis in the past and try not to type at length.

 In this account I am missing out a large amount of detail.  I am giving my story so that I can be added as a statistic and give the information so that it can be accessed by any professionals who are collating information on PR.

    

S**** J***

   

Hello Paul,

 

Firstly a very informative website, one which I have been able to use to and read from to reinforce to both myself and my wife that PR really is a painful condition.

I live in ............ New Zealand and have since around the mid seventies suffered in some form or other from painful and swollen joints. I think it all started when I was a farm worker and my living quarters were cold and damp.

In those earlier years I suffered from extremely sore shoulders, but cannot remember a great deal affecting other areas of my body. However as the years have progressed so too have the areas of my old body which are affected. Very rarely do I notice two areas affected at the same time, but very rarely does the condition affect the same area twice in a row.

I have a belief that weather plays a large part in the onset of PR to any joint as far as the condition affects me. For example here in ............ we have a weather pattern which as an end result delivers a fohn wind to the .......... Plains. Usually around three days prior to the onset of this weather, I start to stiffen up and a joint will start to swell, as soon as this weather pattern changes the PA will disappear as quickly as the onset.

I have seen many Doctors as well as a Rheumatology Professor and as portrayed on you website there is no known cure. Pain killers and tolerance is about the only advice I have received to date.

Earlier this year, whilst riding to work one morning, I hit a kerb, it was dark, and I went over the handle bars. A couple of broken teeth, split lip and one very sore shoulder later I found myself attending an Osteopath to try and get my shoulder working again. He did manage to get it working, but also gave me some exercises to do, to try and relieve the stiffness in those joints which were being hit with PA at the time of the visits. While they do not cure or remove the problem they have definitely helped with the mobility as far as I am concerned. However, since that fall in mid May, I have suffered continuously with PA. Hardly a day has passed that I have not been 100% free of PA, and yes it does get you down.

Yes I too have had blood tests, x rays, fluid drawn from swollen joints for analysis, fluid drawn to relieve the pressure, but all results have come back clear or negative.

I have tried homeopathic as well as natural health remedies but to no avail.

As the Rheumatology Professor said to me that this area of medicine is not a glamour area, hence not a lot of focus or research compared to other areas is carried out, so I guess we just have to live with it the best we can.

 

W.... R........

 

Keep up the good work

 
   
 
Dear Paul,

I feel compelled to write to you having discovered your great web-site! I have been unwell for over a year, this time last year was diagnosed as having post viral myalgia having had several acute episodes which dwindled away. I was quite sceptical regarding the diagnosis especially as I had nothing to show the consultant who probably thought my GP was over-reacting! Well, just before Easter of this year I sustained a swollen knee and ankle, couldn't work out what I'd done to cause this, thought nothing more about it, could function normally. On Easter Monday my left wrist felt as if I'd strained it, couldn't work out why, well my whole hand, wrist and fingers became so swollen and fixed, the pain was agonising. The next day the same thing happened to my right hand so was incapacitated having to draw the curtains open with my teeth! Also I had a swollen ,red right elbow. I am a widow, no boyfriends!, live with three dogs so I had to do for them. Luckily my son was coming and stayed till I could kind of function. To cut a very long story short was off work (am a theatre nurse) for 4months,went back to work when I had a flare -up and was off for nearly another month. I have felt nobody in the medical world cares. Having been sent a copy of the letter from consultant to GP, diagnosis was palindromic arthralgia/arthritis so went online and found this web site. It is very hard being alone and wondered if there was a support group in my area, North Wilts,...... from Bath? I could go on at great length, if you are not bored now, you will be! I didn't mention my age if that's important, a very young 59yr old who feels at times100yrs!

Regards A......

   
hi my name is D.... I am 33 years old I have had pr for nearly 4 years but only been diagnosed for about a year I am trying to come to terms with it but i find it hard. I have always been such a busy person with my 2 boys, husband and full time work I am slowly getting worse the pain is getting worse getting closer together I used to have gaps in between but now IM lucky to have a couple of days. the medication i take is ok but i still feel the pain. the only swelling I have at the moment is my feet this happens anytime of the day. my feet in the morning are painful it feels as though IM walking on gravel with no shoes my husband says I look like an 80 year old woman getting up in the mornings. i have pain all through my body i get it bad in my spine and neck that's when i get my lowest because its so painful to move. my job was home care which i loved i completed my NVQ 2 in care so I'm so sad to have to leave my job I think that's it I'm not to great on these things so i hope you can make sense of what i have written well i wait for your reply thank you.

thanks again

D.... E.....
 
   
 

Hi my name is B.... and I live in C......., WY. I found your web site and match many symptoms for PR but my rheumy only thought about it for a couple of seconds, said no and would not discuss it any further. I don't really think that he knew much about it and he wanted me to fit into an RA diagnosis but I don't. My PCP is great and is open to discussing PR but I don't see her until Nov. and I had a couple of questions.

Any tests of mine come back neg and I do have redness on my wrist matching one of the pictures posted on your site but mine never goes away anymore. Also 4 second finger joints, both knees, both ankles and some toes, right shoulder and lower back are affected, not always at the same time but 2 or more are always in pain. Also there can be light swelling and I have round pockets like swelling about 1-2" diameter and 1/2" protrusion on the outer side of both knees and both ankles that never go away but can get larger when really flaring and are not red.

The largest symptom for PR that I do not follow is that my joint problems never go away anymore, they use to, but 3 rheumys say that I don't have RA. Your site seems to describe the symptoms as leaving at times so I wanted to know if anyone had a firm diagnosis with symptoms like me.

I have been diagnosed with Fibromyalgia by 2 Dr's but Fibro does not swell or turn red and my joints are in awful pain all of the time but change areas though the red left wrist is always flaring.

I have had these symptoms for 18 months with no diagnosis and appreciate any knowledge you can offer me.

Thanks and have a great day,

B....

   
I am so happy I found this website. I thought I was the only one out there with this condition. Here is my story.

I am a 48 year old female who has been living with PR for at least 25 years although it wasn't officially diagnosed until 2 years ago. It started in my early 20's with a flare-up in my knee. My knee swelled to twice it's normal size. Walking was painful, and I had to use crutches. That first flare lasted about a month, then mysteriously disappeared. After that, I'd get a flare every few years, each of which lasted several weeks. I never sought medical attention because it just kind of came and went, plus I was young!

On my 40th birthday is when I knew something was wrong. My left knee again swelled to more than double it's size. But 5 days later, it was back to normal! The difference this time is that I would have flares every 2 weeks, each lasting approximately 5 days. After a couple of months of this, I actually started marking on my calendar when I was expecting a flare so that I could plan my schedule accordingly. I scheduled an appointment with an orthopaedic surgeon. Of course the day of my consult was not during a flare. He took x-rays, ordered an MRI, bloodwork, the whole 9 yards.

Everything came back normal. During our phone consultation when he was giving me the results, I asked what this means. Basically he was suggesting that it was all in my head! I happened to be having a flare that day, so I said "Let me show you what's in my head!". He had me come in that afternoon and he was astounded when he saw my knee. He withdrew 100cc of fluid and could have easily have drawn more. Although the fluid was a yellowish tint (it should be clear), the tests came back normal again. At this point he said I had to have surgery. Following surgery he asked if I had been in a car
accident or had any major trauma to my knee, since it was such a mess. My synovial lining, which is supposed to be smooth and flat like a piece of paper, was growing like seaweed around my ligaments. He cleaned it all out, but said he had no idea what caused it.

For three years, everything was fine. Then all of the sudden, my right knee started doing the same thing! Again it was two weeks being fine, and then 5 days of a flare. We were living in a different state now, so I consulted ANOTHER orthopaedic surgeon. After giving him my history with my other knee, he referred me to a rheumatologist. She ran a whole battery of blood tests, each and every one coming back normal. She said it must be an orthopaedic issue. So back to the MRI, the x-rays...everything normal. He schedules me for surgery and I said the date was great because I would be having a flare at that time. Low and behold, on surgery day my knee was double in size. He was amazed that it was that predictable, and again, he did the same "cleaning out" as the first surgeon.

Two years go by, with everything being fine again....that is until I woke up one day and it was back in my left knee. I knew what I was in for. Again, we had moved, so I consulted with a new orthopaedic surgeon. This guy said I have to see a rheumatologist because he thought it could be Lupus. Fortunately we are now in the ... area, and have access to some of the best specialists. I asked him for a referral, and he gave me the name of 2 physicians. I asked him if it
was his wife having this, who would he want her to go to, and he gave me the name of R..... L....., MD.

Finally a physician who might know what is going on with me! After only one appointment, he immediately ruled out Lupus and said he was confident it is PR. Yippee! A diagnosis! Not that PR is anything you want to live with, I was just relieved to know what it is. He ran a battery of tests, and all came back normal. So here I am living with PR. My every-other-week flare-ups lasted for approximately 7 months, and just as mysteriously as they appeared, they have now disappeared. And no surgery! I have been in remission now for 9 months, hoping for as much pain-free time as possible.

This is an incredibly difficult disease since really the diagnosis is by process of elimination. But for now, I am happy it is gone. Maybe it's not gone, but at least it is asleep!

K...
 
   
 

Hi, I was just doing some research tonight and ran across your site. My husband has PR which has turned into RA. His still moves around in the weirdest places. He has been on all the medications, through all the series from Enbrel, Humira, and now Remicade infusions for the past year. These aren’t working anymore, and they are now considering the newest medication in the US, which is Orencia. No one knew what he had when he first started getting ill about 10 years ago. They accused him of just wanting pain medication. His progression of the illness has caused him to lose his job of 22 years and be demoted. Tonight, he is having a flare in his tailbone, base of spine. He has never had it there before before. He is 49 years old. We just keep the faith that God will one day heal him or they will find a cure. I just want to encourage you to have faith. Some of the injectables helped real well for a time, but it seems after awhile, the disease becomes immune to the treatment. He at times has to have crutches, wheel chair, etc and loses lots of work.

Thanks for the site. We live in A......., TX.

   

I have just found your website and after about 20 years of pain and frustration (not to mention thinking I was going mad!) I feel as though a light has just been switched on. Reading through the symptoms of palindromic rheumatism, I felt I could have written it myself! I have had pain in my knees, shoulders, feet, wrists, fingers, elbows and even my jaw, on and off for about 20 years and when I went to see a Physician, he more or less told me there was nothing wrong with me. I now feel I can go to the doctors and ask if he thinks it is PR.

Thank you so much for all of the information

J.... G......

 
   
 

Hello Paul,

I was very interested in your new website, having suffered from PR since 1980. I usually type in PR from time to time and yesterday I found you!

I had had all the blood tests, but nothing showed up. However, I was eventually diagnosed a few years later, about 1982 by a specialist rheumatologist at our local hospital. Unfortunately, there was nothing to help except pain killers, but at least I knew what is was - it had a name, but nobody understood what caused it or what would happen in the future. Apparently, they still have no idea yet.

I was delighted to read all about my symptoms and that they were coinciding with yours - the debilitating frustration of not being able to walk, and the burning sensation, the movement around the body, the swelling and heat, easing off of pain in one place one minute, yet knowing and feeling it was going to hurt somewhere else the next.

Don't despair yet, you are young, and I am sure it will diminish as you get older! I am now 59 and have been having longer breaks with remission - sometimes years in between. It is not so debilitating now, although it does cause me sleepless nights from time to time. (I have a touch of osteo arthritis now, after a sailing injury 15 years ago, which causes my knee and hip to suffer a bit.)

I note that PR is on the World Rare Disease List - I had no idea there was such a thing! Perhaps this will help me to get to grips with it being 'rare'!! We must be an exclusive group of sufferers.

I keep honey bees, and this year was subjected to about six 'nasty' stings, which are supposed to help boost the immune system, but I have not noticed any difference yet. Honey is good for helping sleep - try some local honey from your area - preferably with pollen grains still in it. It might help.

Kind regards,

K.... B..........

   

Hi - Just discovered your web site this morning. Haven't had time to browse through it thoroughly yet but - THANK GOODNESS someone is writing about PR! I've had PR since I was a teenager - first attack I can remember would have been age 13, 1967. Took till the 1990s to get a diagnosis. In fact, took that long to get a doctor to take much notice. Have bookmarked your site and will be back!

Cheers

M......

 
   
 

Dear Paul

It has been a long time since I bothered to search the net for info on PR. There was nothing when I was diagnosed and didn't bother again. Your site is really informative and wish you all the luck.

I have suffered with PR for years and was diagnosed about 4 years ago. I was very lucky to have a consultant who was researching PR. Unfortunately she has emigrated to Canada and hope that my new consultant, who I am yet to meet, will be as understanding.

I thought that I would just let you know that I take a combination of Devil's Claw, Cod Liver Oil and Glucosamine Sulphate and, I am pleased to say, that I have reduced my number of 'attacks' by 50%. It took about 4-6 weeks before I felt the effects of taking the combination.

I feel that it is the Devil's Claw that is the main contributor as when I ran out for 3 days, I had such a bad attack, I could not walk for 3 days and struggled for over a week. I am now too frightened to run out. I take 510mg per day as a maintenance dose but took twice the amount for the first month and double it if I am getting an attack. The Glu. Sul is taken in 1000mg per day and the Cod Liver Oil is 480mg per day.

As you quite rightly say, different strokes for different folks, but I do really believe that this works for me. Maybe it is only in my head but if that works, who cares. Taking this combination allows me to continue with my job as a secretary, drive my car, go on holiday, etc. I lead an almost normal life. I have a very high R. Factor and have been told that I am very likely to develop RA in a few years. A bit of a daunting prospect as I am only 38 years old.

Devil's Claw is not particularly cheap but to me, it is worth every penny.

I just wanted you know what works for me in the hope that maybe it might be worth a try. My, now ex, consultant was also fairly convinced that there was something in the Devil's Claw and had started to recommend it to other sufferers when she moved on. Now I will not know if the benefits are wide spread.

Hope you are well and thank you for a very interesting site.

Regards

L.. D......

   

Hello~ my name is M....... J.... and I live in H.........., M........ U.S.

My first symptoms appeared 8 years ago when I was 2 1/2 months pregnant. Then nothing for a couple of years and then symptoms every now and then. The last 2 1/2 years have been nothing short of a living hell. I have been to a Rheumatologist and an Immunologist and their best guess is that I have Palindromic Rheumatism. When Vioxx was available I have to say that it helped a lot. I still had the stiffness but it helped with the pain and I was not left completely helpless. I have to say that I would rather take my chances of dying of a heart attack than to have to try and live with this debilitating pain. Depending on the joint involved, I can be completely incapacitated at the time of the flare up. There have been times where i couldn't take care of my children. My last flare lasted 5 days (a record for me). It drove me to the Medi-centre on Saturday and the E.R on Sunday because I couldn't bear the pain. It was my right knee and I couldn't walk at all. I was given an anti-inflammatory injection as well as a pain injection. I was sent home on crutches. The injections gave me relief for about 20 hours (it was heaven) and then the pain and swelling returned for an extra day. my sedrate and one other test always come back abnormal but any additional tests do not show anything. I'm not sure I can continue to live like this. I have had my wrist and hand swell to 4 x's it normal size with unbelievable pain. It has hit my shoulder, hips, knees, ankles and jaw.

I have a history of Lupus and Fibromyalgia in my family. But I don't seem to test positive for either of those conditions. I'm not really sure why I'm even writing to you. Desperation I guess. I'm at my ropes end.

Thanks for listening~~

M.......

 
   
 
My doctor diagnosed my PR when I started suffering with it around five years ago. I was 59 at the time, rather old to be contracting PR.

Are you aware of the research being done by Dr. Makio Iwashima at the Medical College of Georgia in the USA. Here is a link to an article about his research . Could you contact him about clinical trials involving PR? If future trials are planned, tell him I would consider serving as a test subject. I understand that PR is a rather rare disease, and since I am within commuting distance of his laboratory, I might be a suitable test subject.

Enjoyed looking at your website.

G.... E....
   

I'm not sure who I am writing this to but...maybe the founder of this site???
I found your website really easy to read and helpful, and I know there are forums you can write on for support etc. but at the moment I feel, vulnerable and don't want everyone to see this I suppose. but even writing this now, if I get a response or not, is a help.
I'm 17 and female and I'm not sure how long I have had PR for, maybe around 3 years, but it was only in the last 10 months that it has got really unbearable. In November last year, before a diagnosis, I had a really painful attack and the doctors didn't know what it was and I was just on NSAIDS, as my blood tests were showing nothing. It lasted for about a month and was horrid. I would just burst into tears out of sheer pain and frustration and I didn't know what to do. then it went away completely and I almost forgot about it until I had another, much more severe, attack early this year. I kept going to the doctors and the tests kept coming back negative for anything obvious but the pain got worse so I was referred to a rheumatologist in Easter this year . He said that he thought that the most likely diagnosis was PR.
Argh I have probably bored you with all of that but I will carry on...need to tell someone.
Now, I'm on (excuse bad spelling!!) diclofenanc, co-dydramol and omeprazole to protect my stomach. ibroprofen stopped working and I had a bad allergic reaction to eccoxolac. my symptoms include the moving pain in my toe, finger, ankle, knee, hip, elbow joints, pain in the sole of my feet, extreme tiredness, i get extremely bad muscular aches after any exercise, and what is quite bad at the moment is the depression.
i suppose that the reason I'm even writing this is because I didn't know what else to do. I'm currently studying for my A-Levels and, excuse my language, I fucked up last years As exams, well the whole year. some days I was in so much pain I couldn't even go to school. and it utterly distracted me. at the moment I am dreading going back in September for another year and I really don't know how i am going to cope. I have days when its fine, and its just pain and i take pills and I deal with it but at the moment, they are talking about putting me on (?) suppressant drugs because there has been no remarkable breaks in the symptoms (i.e. this flare up has lasted too long) since seeing the rheumatologist. the drugs sound horrible, and even if I'm not put on them, I have to get through university entry and revision and study and exams without drugs, and just with the painkillers, which make me feel crap anyway. I really don't know how to cope. I try talking to my friends, and I mean they are great friends, but its when I'm alone like rite now that I cant pretend I'm ok any more and I realise that I don't think I can cope.
I know that you have had PR for so much longer than I have so me complaining after such a short time is almost seeming stupid to me, but you seemed approachable and I didn't know what else to do.
thank you so so much for taking the time to read this. please respond if you feel you can

H.....

I tried so hard to contact her through the email address she gave me and only hope I reached her. Unfortunately the emails weren't being delivered to the address she gave me... at first. I did post a message on the website for her to contact me again.. It is emails like this that shows there is a real need for help from the medical world for people with PR. If you "H" read this, let me know you are ok and now coping.

 
   
 

I was very glad to find this site. For years I thought I was losing my mind. I would have weird things hurt in my body. Not knowing what the problem was the Doctors said it must be a virus.

I now have been diagnosed with PR, it does seem to explain many pains I suffered over the years.

P.. S.... 

 
   

Hello,

I just came back from my doctor with the PR diagnosis. In the last 10 minutes on your site I have learned so much and am relieved to know that I am not the only one with this extremely painful "pinball" pain. While I have many areas of your website to view still and expect I will come back many, many times to the forums, I need to tell you that I burst into tears when I saw your pictures. When this first started in May I could not find any information on the web with any pictures showing what resembled my swelling, which I agree is no indication of the severe pain. I, too, took pictures but they didn't show the swelling in the way it looked to the naked eye. I am so very glad you posted yours I really have confidence in the diagnosis I was just given. While I would have preferred a "here take this and you will never deal with this pain again" diagnosis, I am so very relieved to find your site to help guide me through this new addition to my life.

Thanks and take care,

D......

 
   
 
Hello
My name is E..... and I'm 15 years old. Nearly 2 years ago i was diagnosed with Palindromic Rheumatism. I live in a small town about ...km from Adelaide, in South Australia with my family. Every so often, i would be crippled with severe pain and swelling in my joints. For about a year now I have been put on chemotherapy drugs to help stabilise my blood levels, as they were off. This made me sick for about 2 days with nausea, but it has helped. As well as that I 'm on Plaquenil as well. Every second week I would have to go to the doctor to get blood taken and tested. I now have another problem with my knees, the other day i went in for a arthroscopy and have just found out that the arthritis has made my cartilage soft so within some years I will need a new knee put in. Through this time my family could just cope, I would be off school for a week at a time. Now that I'm entering the last years of high school i need to try and get this condition So if there is any new information that comes through please let me know at; ............
And thank you for bringing this disease into light.

Sincerely
E.....
   

Hi Paul

Thanks for the reply! I have an appointment on the 29th July with my consultant Rheumatologist, ............................. I will get the rash checked out then!

I have no objection to you using the picture, maybe you would want to wait until I seen the specialist to confirm that it is related! I'll leave that up to you.

On my last visit two months ago I had a badly inflamed right knee and had 10 mls of fliud drained off and a cortisine injection directly into the knee (the draining was painful) within two days all signs and pain disappeared! I'm not sure how often these injections can be used, have you any idea?

What goes on in the forum?

Speak to you soon

Regards S....

 
   
 
Hello,

Thanks for that, hope you are feeling a bit better today. It seems that my attacks are in-between, I usually have an attack every 48 hours and the attacks can be in 1-3 joints, sometimes they are quite mild and others they disable the joint completely.

I am going to look into some more treatments to see if I can find anything else that helps, definitely stopping the Avloclor as it does not seem to be helping anymore and my eyesight is really poor.

Going to educate myself some more and then go to see my GP as he really has not got a clue.

Thank you for all your help, much appreciated,

A.....
   

Good Morning,

I found your website yesterday, can I just say Thank You, finally I do not feel so own my own.

I have had PR for 2 years now and have only been diagnosed for 18 months, there are quite a few questions that I would like to ask as so far the Dr and Specialist have been no help at all – with my Dr saying for the 6 months of my illness that ‘no condition behaves like that, it must be in your head’! and my specialist, when I said how much pain I was in and I was getting to a point that I could not cope ‘Oh isn’t that a shame!’ (I no longer see him, for obvious reasons).

I have been taking Brofen Retard 800 mg for 18 months (though I now only take them when in extreme pain and that is just habit because they don’t help) and Avloclor (Chloroquine phosphate) every week. I think the Avloclor helped to begin with and it seemed to put the PR in remission for about 4 months but now it is back and getting worse again.

I have taken a variation of other pain killers and anti-inflam’s but to be honest nothing seems to work, even a morphine based tablet I was given on one of my worst attacks did not make any difference, I just found that everything was quite a lot funnier.

What I want to ask is have you heard of anyone else having attacks in their spine? I had one for the 1st time on Friday/Sat/Sun – it shocked me as so far this was my only joint that had not been affected. Also have you heard of anyone saying that straining yourself causes an attack i.e.: I lifted a weight and the day after had an attack in my Knee and Wrist?

My Husband is really concerned as I am very stubborn and I do not want this to take over my life – so I insist on pushing myself – however it is then him who has to dress me, bath me and generally run around after me when I have bad attacks. He is worried at the minute because I have said that I am going White Water Rafting with work and he does not want me to go as he thinks that being bashed about is a very bad idea – in the back of my mind I agree, but wanted to know if anyone else’s attacks are triggered like this?

Anyway, hope you are having a pain free day, I have a few threats this morning but as yet am okay so far today.

Looking forward to hearing from you soon,

A.....

 
   
 
Hiya,

And thank you once again - I will join the forum, thank you for your advice

- it is reassuring to know that someone understands.

A.....
   
Hello again,

There is one more thing I would like to ask, don't know if I want to know the answer but am going to ask anyway.

How has your PR progressed? I.e.: To begin with how frequent/severe were your attacks and currently how frequent/severe are they and how many joints are
being affected at one time?

Am a bit worried by the answer but I want to know, on the scheme of things what will happen?

Thanks for listening

A.....
 
   
 

Hi, My name is S.... I've been suffering from severe intermittent pain for over two years but only recently has there been anything to show for it, with my hand swelling twice and then my foot. This has lead my doctor to think about PR. I am waiting to see a rheumatologist now. Didn't get on with the last one. I am having to fight all the way. Nobody listens. They take blood, and if nothing shows up, that's it. Any advice on how to explain it would be helpful.

Really interesting to see your photos. The swelling on the back of the hand and the red 'penny' on the foot is exactly like mine was. I will take photos of mine next time so that I can show the specialist. Hadn't thought of that before.

Medication that I have been on for about 9 months that helps me sleep and helps my depression is 300mg Gabapentin.

Any idea how many people suffer from it ?

I also have Addisons (Adrenal gland) don't if there is any connection.

Will let you know when I get confirmation of diagnosis.

Regards

S.... C.........

   

Thank you! Thank you! Thank you!

I was diagnosed with PR a little over a year ago, but I have been suffering with it for years. I also have battles with depression but did not know that it was a symptom. After periods of extreme pain, though, my depression does seem to get worse. My GP says that pain uses up serotonin.

Thank you again for starting this site just to let some of know that we're not suffering alone. Keep up the good work.

J....I have had PR for the last 5 years. I have also had lower back surgery. Well, my sports medicine doctor gave me these Lidoderm patches which are just Novicane in patch form to place over my back to combat the muscle spasms and
they worked great. Well this morning I woke up in the usually God awful shoulder pain and thought I would try putting one of my patches over my shoulder and I'll be darned if it didn't take the edge off of the pain!!!! I just thought I would share this with you fine folks out there.

I am also taking 15 mg of Methotrexate every week and am also taking 10 mg of Arava daily. I had to wait between 30 to 45 minutes before I got some relief but I actually feel a little better.

Take Care,

m.......

 
   
 

Glad to see some info on PR. There is not a lot about this process anywhere, I found your site very interesting. I was beginning to think I was the only one who had it. I have suffered this for 7 years although the last 3 years it has been in remission until the last 6 months. I have been hospitalized 2 times with it in my hip joints. That was the most painful thing I have ever endured in my whole life. My doc says people never get PR in the hip joint. Have you ever heard of this??

M..... B.......

   

Hello, I just discovered your web site this morning. My husband is in bed with PR right now. Every thing I have read here this morning rings true with what he has gone through. I do have a question. My husband also has a problem with his ears and face becoming red and extremely hot. His discomfort level is intense. I didn't know a person could become so red without being sunburned. At times he has little raised splotches or patches under his eyes along with all that heat. He applies a cold cloth and ice and eventually it goes away. I was wondering if anyone else with PR has had this happen. There has been no medical explanation for this these symptoms. My e-mail address is.........................I will tell my husband about this site when he is up and about again.

Regards,

M...

 
   
 
hi. I was finally diagnosed with PR. I would like to chat with someone about this disease. I'm not sure how to go to a chat room. I know very little about a computer, so it is difficult for me to get around. If you can help me please write back. I need to ask questions that can be answered at the same time. E-mail might be a couple of days apart. I'm losing my mind over this. Please write as soon as you can.

Thanks
M....

   

Thank you so much,

I was diagnosed with PR this week but not given any information on it by my rheumatologist. I left feeling disheartened and confused, feeling like I had wasted his time.

I have been in increasing amounts of pain for 4 years now and with 4 children things have been tough at times.

Reading some of your web site has brought tears to my eyes just to know that there is someone out there who understands what it is like, as sometimes I feel that people think I moan about nothing and that I am just lazy. I feel so low.

So thank you I will keep logging on

H....

 
   
 
Interesting - I recently found a reference to PR and realized it described something I've been experiencing for more than a decade. Slight redness and some swelling at a joint, most often in the right or left wrist. Moving the fingers was painful, unless I moved them "manually." Episodes came on very quickly and left just as mysteriously after a few hours or a day or so - and might move on to another area. Then long periods - months, usually - of nothing. I had asked my doctor about it some years ago, and he didn't have a clue.

Main attacks are wrists and fingers. Occasionally right or left jaw. In the past 10-15 years I have hand one episode behind the left knee, and one in the large muscles in the back of the neck. Mostly it's the wrists, which tend to keep the fingers from closing. Only one wrist at a time - fortunately.

Nice to know someone doesn't have an "Voodoo" doll and a packet of pins - which was my next most-logical explanation.

A..
   
Just letting you know one of our mods has PR has put a link to your website on our community:

...........................
Great information and beautifully written!

 
   
 

Hallo Everyone !

My name is R...... , 59 years , live in Milan Italy and today , after several years , I found a Doc that diagnostic I suffer of “ Palindromic Rheumatism “ , nice !

Since several years I have those attacks , you know and are now coming in cyclic periods of 4 to 5 weeks.

This situation is now conditioning my life due to the very active work and sport activities.

I found you in the internet while I was informing myself about the new situation that probably will follow me for the rest of my life.

How do you fight it ? with medicaments ? Alternative medicine ? Food ?

Will be nice to hear from you.

Best regards

R......

   

just dropped by to say thanks for your site. I have been going crazy trying to get a doctor to listen to me and not silently label me as a hypochondriac.

I found your site very helpful. lots of down to earth information - factual, but also personal, which can only be experiencec by the person experiencing the disease.

thanks paul and good luck with your journey through life.

R.... R...

 
   
 
Hi Paul:

Glad to see you out there. I was diagnosed with PR yesterday. It's good to know there is a reason for the pain I have been experiencing but I am a bit daunted by the posts I have been reading. This disease is a disabler I have no doubt and I have had it for a long time but am still working and doing well. Do you know of any alternative sites for help with the disease? I am not eager to take Methotrexate. Right now we are going to try Prednisone during an attack to see if this helps. I am getting the recurrent attacks with more frequency now and it is in my feet which almost makes it impossible to go to work. Right now I am hopeful that the attacks come with les frequency and I can still maintain my lifestyle.

Finally thanks for posting. It is good to know someone else is out there and supportive.

I can be reached via email at ...............
   

Hello,

I live in Northern California and found your site through a link on the yahoo groups I belong to. Someone in Scotland provided the link.

I would like to be a part of whatever continuing efforts you are planning. Although there are a lot of forms of RA I have found no one here in the San Francisco area who has PR like me. The fact that we can now communicate on an international level through email, provide support and encouragement not to mention explore possible therapies really appeals to me. I have had PR for nearly 6 years....and it's an up and down situation as you well know.


Thanks for your efforts on behalf of us all!


Sincerely,


M....... A....

 
   
 

Thank you so much for such a complete, clear view of this disease. I would recommend your website to someone trying to understand this disease. Your photos are great and make me realize I probably had some light flares before the pain got bad. I just passed them off as overworking a joint or muscle, but they looked just like your wrist and foot. It took the pain getting worse for me to get an actual PR diagnosis.

Again thanks,

G...

   
Hi Paul

Thank you for your response and for letting me know about the survey.

I have also read you post on the pressure. I think this is something I will definitely investigate further. Recently I flew from Adelaide to Sydney, a relatively short flight of 90mins. Prior to the flight no signs of PR however as soon as we reached the 1000ft I crippled up with PR. On the return flight I was the same, no sign of PR prior to the flight however again once we had reached a 1000ft I crippled up again.

I have my own barometer at home and as soon as the barometer changes dramatically my PR flares. So I feel I definitely need to look into this further.

Thanks again for your reply.

Kind Regards

T....
 
   
   

We intend to reply to every email we receive, we believe we have replied to everyone mentioned above.  If we didn't please accept our sincere apologise. It's not easy with PR and sometimes we may receive a lot of emails together which means some may slip by un answered.