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 newbies that read this.

Q. What is PR?

A. Basically - PR is a painful disorder in the joints and surrounding soft tissue. It is actually an 'Autoimmune Disorder' where the body attacks its own joints and surrounding tissue causing extreme pain.

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 often it can 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 is different to everyone and is different every time.

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. You can also experience different levels of pain throughout and between flare ups. PR is different to everyone and is different every time.

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.

Q. I only get pain/problems with my joints every now and then have I still got PR?

A. PR is 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 is different to everyone and is different every time.

Q. I haven't had a bad PR Flare for months/years am I cured?

A.  A 1/3rd of PR is supposed to burn its self out at some time. 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.

Q. Is PR the same as rheumatoid arthritis (RA)?

A. Some Rheumatologist 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. No, after a flare up of pain the joints and surrounding tissue should return back to normal. This is one way to tell it apart from RA which often leaves joint damage.

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 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. A 1/3rd of PR is said to go on to RA or another form of arthritis or other autoimmune disorders.

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. An 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.

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. Autoimmune Disease 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 is different to everyone and is different every time.  Also it is possible with the plentiful side effects of PR medication that the medication is causing the other conditions.

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? 

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 any thing 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 etc or  weather this can make the body find it hard to handle the PR. Eliminate the misery and things seem better and help the body fight back.

Q. There seems to be new cases of PR everyday is there a PR epidemic? Why is there more people joining our forum everyday?

A. With the work the IPRS is doing spreading awareness and bringing together people from all around the world. We are able to reach more people. People with PR are finding out they are no longer alone.

Q. Why should I join the IPRS?  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" "I use another user group to comment on, it's an old habit".

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. 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 pics 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.