Research into PR finally!

I have just returned from Chapel Allerton Hospital in Leeds where I was able to sit in on a presentation to the Patient and Public Involvement group about Palindromic Rheumatism and the research there into PR (funded by Arthritis Research UK) and also early arthritis.

There were three presentations in total, two specifically on PR. I think I need a little time to digest it all as there was a LOT of information given in a very short space of time (half an hour for each presentation). However, I thought I’d blog now about some of my initial impressions.

Firstly, it’s great to know that there is finally some research specifically into Palindromic Rheumatism. As anyone who has read my blog for a while will know, there is precious little research into PR itself. So, I was really pleased to hear Prof Emery say that PR was particularly interesting to study, NOT just for getting a better understanding of PR, but also for possibly improving our understanding of rheumatoid arthritis too – after all, some of us with PR will go on to develop RA. But not all.

Another thing he said –though not in his presentation – is something that I think is pretty important, but not something I have considered before. We were talking afterwards, and he said that there was something going RIGHT about my auto immune response in that it was able to switch itself OFF. I hadn’t thought about it in that way before. I mean, yes, I’ve often felt grateful that in ten years, I’ve got no obvious joint damage and have not apparently progressed to RA (though this does not mean I won’t in the future), but I’ve always thought about my inflammation and flares as something going wrong in my immune system, rather than thinking about the fact that I have days and sometimes weeks of no inflammation and pain as something going RIGHT! As Prof Emery said – there is something going right in that the inflammatory response switches itself off and I go back to ‘normal’, whereas for someone with RA, the switch is almost permanently set to ON (as I understand it)….

It leads me to think that it’s probably equally important to look at what’s going RIGHT with people with PR as well as what’s going WRONG in order to understand it better and possibly help prevent progression to RA – and maybe even prevent flare ups altogether? I had truly never thought of it like this before.

The second presentation was about the results of research into people who had a diagnosis of PR. The numbers were small – only 58, but the results were still interesting. Of the 58 people, 48% did not (during the time of the study) progress to RA, and 52% of them did. One of the most interesting thing about the findings was that there seemed to be three things that seemed to make it more likely for someone to develop RA (any one of them increases the risk of developing RA, but if someone has all three, that will increase the risks even more).

  • Smoking. I find this particularly interesting. I had never known about a link between RA and smoking, and I can’t give up something I don’t currently do but it could be useful information to PR patients who do smoke as an extra incentive to give up.
  • The intervals between flare ups were smaller in those who progressed than those who did not. Sadly (for me), the intervals between my flare ups can be really short – though they seem to be getting longer since I’ve been following my new regime.
  • Anti-CCP (ti-cyclic citrullinated peptide antibody) – was a big indicator and seemed to be very significant. I can’t remember the figures here, but high levels of Anti-CCP seemed to indicate that people were more likely to progress to RA than those who did not have any or had lower levels.

As Prof Emery said – if we can understand better who is more likely to develop RA, then we can intervene early with treatment in order to perhaps prevent RA developing and joint damage happening in those people.

As soon as I got home, I went to look at my last lot of blood tests to see what mine showed. I couldn’t see whether or not they had tested for Anti-CCP, but on the letter to my GP after my appointment, it said under diagnosis that my CCP antibodies were negative, so they must have tested me for it at some point. I’m not sure how recently that was.

All the presentations were very interesting, but it is a passing comment that Prof Emery made that also piqued my interest from a personal perspective. Just towards the end of the session, one woman in the audience told us how starting to exercise – first by doing swimming and then tai chi – had made a huge difference to her life. Prof Emery responded to this by saying that the immunology of exercise was very interesting and that exercise could make a difference to your immune system, and that further research was needed, but that he believed that it could be an important therapy for RA, possibly improving the immune response.

It made me remember my own experience earlier this year at the bootcamp – how six days of intensive exercise did not exacerbate any pain or flares, but actually made my flare disappear altogether (after a six month almost permanent flare). And it also reinforces my belief that my regular yoga practice and exercise regime (almost daily cycling, plus zumba classes twice a week, sporadic pilates classes and daily home yoga practice) is probably as crucial to my current and future health as any drugs I might be taking.

So, what conclusions can I draw from what I heard today? Well, I’m definitely incredibly happy to know that at least someone finds PR interesting enough to study. However, it’s not likely to make an immediate impact on me or other PR sufferers.

I truly do believe, however, that taking care of my health holistically could be the key (in my case) to managing my symptoms and helping my immune response right itself. In me, this means following my current diet regime, doing lots of stress management (yoga, meditation, exercise), continuing to exercise (not just for the happy and stress-busting impact, but also for the immune system too, as well as helping keep me mobile, supple and build up strength), and managing my energy – resting BEFORE I need to and not overdoing it. Since I have been stricter about this holistic approach to my health, I have had more energy (I am even able to work a full 7 hour day, which would have been unheard of this time last year), fewer severe flares, and more pain-free days. Long may it continue.

Thanks for reading and thanks to the Leeds Musculoskeletal Biomedical Research Unit for having me along today. I apologise if there are any inaccuracies in the blog – I was writing as quickly as I could during the presentations, and so it’s highly possibly that I misunderstood or misinterpreted something!

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3 responses to “Research into PR finally!

  1. I was officially diagnosed with Palindromic RA in March 2011 aged 42 but probably had symptoms for 18 months before that without being able to spot a pattern. It has taken until now to find a medication that works for me and am finally on Anti-TNF (after an appeal). I am working out what my triggers are, stress being a primary cause although exercise helps. The main problem with Palindromic RA in my opinion is that it does not fall into recognised government categories (eg flares might occur in 1 wrist, not both; flares in joints not on the DAS scale). The pain is still excruciating but they do abate. Thank you for blogging your experiences as it is comforting to know others with a similar fate are getting on well with their lives. Finally on this medication I am finding a freedom that I had long since forgotten. I read with interest your blog today and am happy to take part in any research – anything to understand this illness and help any future suffers.

  2. smileynvp@att.net

    Very interesting. I am have PR and was diagnosed about 3 years ago after about 2 1/2 years of symptoms. I eat a gluten free diet and that seems to have helped. I believe VERY strongly in exercise. I teach yoga and I am a personal trainer. I do yoga 3 times a week and run 4 days a week. I am currently training for my 3rd half marathon. During my long training run today I was thinking that I wish there was a study of exercise and PR. Every time I have been in training, I barely have any flares. If I do flare, it is very short. You would think it would be the opposite because running so far and long totally depletes the body I started training for this race after a flare that lasted from July until the first part of October. They had to double my Plaquenil to finally break the flare. Even though I was exercising, I couldn’t break through the flare. As soon as I was feeling better, I decided to train for this race (it is next weekend!!) Unfortunatly, I know there are many folks with PR that have never exercised, so the thought of started when they feel so bad is daunting. Hopefully, when I go back to the rheumatologist in February, we can cut the plaquenil back down to 1. Thank you for your blog. I have never met anyone with PR in person.

  3. Hi,
    It was really great to find your blog. I have been suffering off and on since April and just got diagnosed today. The Dr wants me to start on the medication that has all the side effects and monthly blood work but my gut says no. My pains are actually are nothing like they were in the beginning where I couldn’t even function. She did mention the drug you are on and I decided that I am going to see her and request that I try this first. I think the biggest issue for me is stress especially because of my 15 year old.
    Hopefully she won’t give me a hard time. I look forward to more of your blogs.

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