Frequently Asked Questions
If the IPRS had a penny for every time these same questions were asked then we would not need donations and would have enough money to have a website in every country in the world and in every language. Here is a list of some of those questions asked. I hope they help those newbie's that read this.
Q. What is PR?
A. Basically - PR is a painful disease/disorder where the joints and surrounding soft tissue area is affected by pain and or inflammation. It is actually an 'Autoimmune Disorder' and can be explained by where the body attacks its own joints and surrounding tissue causing extreme pain. The most common thoughts that some experts say is were the body doesn't recognise itself and attacks itself causing inflammation and pain. Others say it's due to some kind of bacteria inside the body (usually in the intestines) that leaks out or attacks the joints etc. Whilst others put the pain down to things like the way the body process information and pain through the nerves etc.
Q. Can it be PR if I don't get swollen or redness around my joints just pain?
A. Yes, PR always causes lots of pain, but in a lot of occasions there is no visible signs. Whilst PR is usually associated with inflammation in the joints, it can often be invisible to the human eye, sometimes called 'micro inflammation'. The only sign that you have PR / inflammation in the joint is your pain. PR can be different to most and can be different every time you experience an attack.
Q. I don't seem to get any real pain just a niggle or stiffness in my joints?
A. People experience different levels of pain at different times, you may have a higher tolerance threshold or you may only have the PR Pain in some joints (only one or two joints affected). You can also experience different levels of pain throughout and between flare ups. PR can be different to most and can be different every time you experience an attack.
Q. I have the following symptoms......... is this PR?, can you tell me if I have PR?
A. The IPRS is not able to give a diagnose to anyone, if you think you have PR you should visit your GP or a Rheumatologist.
Q. Does PR rob you of energy as I feel tired all the time even after a good nights sleep.
A. PR can leave you physically and mentally drained because of the constant aches and pain, medication used and the nature of PR. One of the most common side effects of an auto-immune disease is fatigue.
Q. I get Flue like symptoms around the same time as a bad 'flare up' is this part of PR?
A. You can experience a fever during an attack/flare up especially if you have inflammation in several joints at once.
Q. I only get pain/problems with my joints every now and then, have I still got PR?
A. PR is usually different for everyone who has it and can change with every flare up. Most people go through different cycles of pain and flare ups throughout their life. Not everyone will experience the same pain or problems. PR can be different to most and can be different every time you experience an flare up.
Q. I haven't had a bad PR Flare for months/years am I cured?
A. An estimated 1/3rd of PR is supposed to burn itself out at some time during your life. You can also go into a so called remission at times in your life which can be days, months or even years. This can be due to medication or just down to your PR. By the variable nature of PR it may just come back just the same as it went away. This can make it extremely difficult in knowing whether or not your medication/diet is working when 'remission' occurs similarly whether or not a previously used medication could work again.
Q. Is PR the same as rheumatoid arthritis (RA)?
A. Some Rheumatologists believe it is a type of RA. Sometimes PR can be the onset of RA, but often it behaves like a different condition. The presence or absence of a Rheumatoid factor in the blood is no indicator.
Q. Does PR cause permanent damage to the joints?
A. It's not supposed to cause joint damage, after a flare up of pain/inflammation the joints and surrounding tissue should return back to normal. This is one way to tell it apart from RA which usually causes joint damage. However with constant attacks of inflammation some damage may occur and may also be the reason for progression on to some other form? It may be that damage is happening at a micro level.
Q. I have PR but it is not that bad at the moment should I take any medication for it?
A. That is a decision you should make with your DR and or Rheumatologist.
Q. Why is some medication prescribed for PR used for other disease like Malaria or Cancer?
A. There is no known cure for PR so the drugs given are an attempt to treat the symptoms. The drugs often prescribed have properties that reduce inflammation in the body therefore are used in PR and RA cases with the hope they will help reduce the inflammation and stop the pain.
Q. I have PR will I get RA?
A. An estimated 1/3rd of PR is said to go on to RA or another form of arthritis or other autoimmune disorders. Having said that, some believe that figure is just an estimate. It is hard to say as some cases are diagnosed with PR when its RA and vice versa.
Q. Why is it some people with PR have the Rheumatoid factor and some don't. I don't have the Rheumatoid factor does this mean I won't get RA.
A. A Rheumatoid Factor is no indicator of who has PR and who hasn't and also as to who will get RA or how RA will affect them. Some people without the factor in their blood can suffer more with RA than someone who has a positive Rheumatoid factor. A Rheumatoid factor just means you have a factor in the blood. This can help the Rheumatologist as a guide to a diagnosis etc.
Q. I don't have any problems or side effects with the medication I'm on but other people have had. Other people seem to be on different drugs should I change my medication?
A. You should use the medication you are happy with and that works for you. The medication you are on will depend on your situation and which medication the Rheumatologist thinks will work best for you. Some people are lucky as to finding a drug that works for them whilst with others it can be a case of trial and error.
Q. I seem to have different symptoms with my PR, I have noticed a rash or sore throat etc when I have a flare up.
A. Auto-immune Diseases can affect people in different ways, you can also have other medical conditions as well as PR which can go side by side or even conflict. PR can be different to most and can be different every time you experience an flare up. Also it is possible with the plentiful side effects of PR medication that the medication is causing the other conditions. You should always consult with your DR with any new symptoms etc.
Q. I have noticed that if I stop eating or drinking certain foods like chocolate, potatoes, or alcohol my PR flares stop or reduce. Why doesn't everyone with PR just stop these things in their diet?
A. Just because you have found something that triggers your PR flares this doesn't mean it is the same for everyone who has PR. As PR is different for everyone so is the so called "Cure". Most people will try everything at least twice to try and stop the pain. These people will know more than anyone else which helps or hinders their PR. In my experience anything that bothers your body will have an affect on your PR and the way you can handle/deal with the pain. If you have an intolerance to food or weather etc this can make the body find it hard to handle the PR pain. Eliminate the 'misery' and things seem better and help the body fight back. Due to the random timing of flare ups, it is easy to assume that a start or an end was caused by a certain trigger, when actually it is coincidence. Especially if the coincidence happens two or three times it is vey hard to believe otherwise.
Q. There seems to be new cases of PR everyday is there a PR epidemic? Why are there more people joining our forum everyday?
A. With the work the IPRS is doing spreading awareness about PR and bringing together people from all around the world. We are able to reach more people and help others get a proper and speedy diagnosis. People with PR are finding out they are no longer suffering alone.
Q. Why should I join the IPRS forum? Some comments received: "At the moment I only have bad flares every now and then," "I haven't anything to say or to contribute so I don't get involved" and “I am happy to just read others words”.
A. A good reason why you should join the IPRS there is no other way to find out just how many people are affected by PR around the world. Even if you don't get involved posting on the forum by joining you are adding your name to the list of people affected by PR. There is knowledge and strength in numbers. You never know when you might just have a relevant comment to add which will help others. The more people that post, then the boarder the experiences that others can read about, rather than the forum being one sided or limited to the views of just a few. The more people involved the more people we can reach, and the larger the society the more likely further research will be carried out.
Q. Why should I donate or get involved with the IPRS.
A. If you use the website and enjoy being part of the IPRS, want to reach more people suffering with PR and you want the IPRS to continue into the future then the IPRS needs to cover it is costs and the site needs to remain fresh and informative. IPRS aims to keep the site free to all and keep any costs to the absolute minimum but rely on donations to stay on line. Simply using the online shopping affiliate links can earn a small amount of money for IPRS. BUT it is also important for you to contribute to the site in other ways. Posting in the forum keeps discussion fresh and attracts more people to the site, be ready to answer those newbie questions. Submitting your PR story (and even photos if you dare) really gives other PR suffers a sense of not being alone, not going mad, and even reduces bouts of depression. The IPRS will only continue running with your help and support. There seems few dedicated PR Organisations and sites out there so please help by joining the forum, send in your pics and stories of PR, spread the word, add www.palindromicrheumatism.org to links on suitable sites and search engines. If you don't get involved and or donate it won't continue to be around and offer all the help, support and advice on PR.