Does it ever go away?

I have had diagnosed PMR for about 3 1/2 years and was on steroid treatment for about a year.

Although my discomfort has gone from debilitating (onset) to manageable, with OTC meds. I still am fully aware of the disease but was wondering if anyone has experienced a full remission or disappearance of the disease? I might add that I was 52 years old at the onset.

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  • Many people have managed to get off pred and have few or no symptoms afterwards - how long it takes depends on the person. There is no doubt that the underlying autoimmune disorder will probably at least wane in activity and often die away altogether in most people - and that can take anything from a year or so to several years. In some people it persists even longer.

    However - was it explained to you originally that pred doesn't alter anything longterm? Corticosteroids are a means of managing the symptoms for as long as the disease is active - PMR as we think of it is not the illness, it is the symptoms of an invisible illness. As yet there is no cure or way of modifying the underlying autoimmune illness which cause inflammation in various parts of the body by making the immune system attack it because it doesn't recognise the body as "self". Using pred to reduce the inflammation in an ongoing way reduces the symptoms.

    There are two forms of what is called "remission". It can be real and full, happening naturally over time or it can be what is called "drug induced" - you have fewer symptoms as long as you take the medication. The year you took pred for allowed you a better quality of life in that year - when you stopped you went back to baseline. It sounds as if your PMR had calmed down in that time or, indeed, it may not be PMR you had, there is no cast-iron proof one way or the other whether what we have is PMR as usually defined or something quite similar. What can be said is that there is something that causes these particular symptoms that responds very well to a dose of about 15mg of pred or less - "steroid-responsive polymyalgic syndrome" if you want another posh medical sounding name.

  • Thank you very much for sharing your insight and experience.

  • I don't ever sit down for long and do loads of exercise that uses all my muscles throughout the body. If I sit down for a long time I am very stiff and achy and know my body isn't fully 'right'. I do swimming twice a week, riding once a week and walking every day, plus exercises from the physio when I remember them (about twice a week on average). I think this keeps everything at bay and enables me to be off steroid (after a similar length of time to you). I was also put on Methotrexate towards the end of steroids because it was discovered I have osteoporosis. I'm now wanting to be off Meths, due to side effects and am also not sure that it has ever had much effect on how I feel or move anyway - even if it is supposedly working in the background. I have found that exercise, if you can do it, is the best thing. I'm 60 and have always been active, thankfully - so not sure how much effect my history of activity has on now.

    But I'm not you - and maybe you should go and discuss this with whoever is treated you with steroid? Maybe you stopped a tad too soon? Maybe there are other drugs that might just complete the push your body needs to return to normal? Or maybe it is a case of wait and see. I'd definitely say talk to someone medical........and every best wish that you beat this pain-in-the-ass condition!

  • If it was PMR you had methotrexate alone will do nothing - it is only used by some doctors to try to reduce the dose of pred. There is no evidence it does so (some studies say it does, some say it doesn't) but theoretically the effect is to make a lower dose of pred as effective as a higher one and so reduce the total amount of pred used over the course of the disease. Unless what you have is actually late onset RA methotrexate alone will achieve nothing so there is no point in taking it for PMR - especially if it is making you fell ill. It is only worth it as long as the benefits outweigh the disadvantages.

    I, too, coped with a mild degree of PMR the way you do until it hit like a 10 ton truck with severe bursitis as well - I couldn't do much at all, even dressing and moving about the house was a struggle and I had to give up going to the gym because I simply couldn't get there. Then it was pred - and the pred must be taken as long as the disease is active. Stop taking it before the disease becomes inactive and the symptoms return.

  • Like you, I have always been quite active in exercise, and continue now with spin and weight training. I loathed being on steroids and gradually reduced them until I could manage with OTC meds. I'm aware of it every day, some days, more so. I should probably revisit my rhuemy.

  • Hello Smh - Yes, I am experiencing remission from PMR and GCA, BUT it took 5.5 years on steroids to achieve that goal. If you are having to take OTC meds because you are still experiencing the effects of continuing inflammation in your body, then it does sound as though your year on steroids was not quite sufficient. Please be aware that untreated/uncontrolled inflammation of PMR puts you at a higher risk of developing the linked condition, GCA - I know from personal experience.

  • Thank you for your comment. I do not have GCA nor have had accompanying headaches. I did not know that I was at an increased risk for it. That's scary.

  • The other thing you have to bear in mind is that using even OTC painkillers is associated with both short and longer term side effects. Ibuprofen and other NSAIDs can cause gastric bleeding, paracetamol isn't good for your liver. Quite a few NSAIDs have been associated with other long term cardiac problems, codeine is constipating and can be addictive.

    Just because they are sold OTC does not mean they are totally safe.

  • Hi Smh, I'm sorry for what you are experiencing. I think that is a very good question. My sense of this, at this time is, that the potential for it to "flare" or be active will continue. I'm not sure for how long. We are susceptible. At this point, I'm trying to deal with the disease, prednisone and the symptoms. It does seem to decrease and become somewhat manageable, but as so many of these posts show, the slightest event can cause recurrence. It seems there may be some hope in the biologics, for keeping these, in remission. They are still testing and the results don't seem to present a clear picture. I believe I may like to try one. I hope you get some answers, if you do, would you share them? I wish you health and freedom from this situation. Thanks. all my best, Whittlesey

  • Thank you for your response. I think most of the members on here are from the U.K. I'm in the U.S., and have received much of the same treatment advice

  • Whittlesey is in the USA I think.

  • I am 53 and believe I have PMR. I am down to 7 mg of pred trying to go to 6.5 and really started to hurt and be stiff all over. I have had it for appx 2 yrs. I sure hope it goes away!

  • Wouldn't that be a blessing to us all.

  • Hi SMH,

    Yes - it's my belief that it does go away. It goes back to sleep, and can be kept asleep if you hold on to the fact that PMR is an autoimmune disease and, therefore, it's part of you - in your genes.

    I am 3 years and 3 months down the line from when my illness reared it's ugly head and I, literally, couldn't get out of bed.

    Pred at 30mg put it back in it's place in the beginning and my relationship with these two monsters, the disease and the drug continued until 3 months ago - my PMR was knocked cold and all I had to do was get off the pred and that meant waking up my adrenals. Great! I'm now stuck on 6.5 - 6mg and today have felt quite good, but I wonder what tomorrow might bring.

    I am still not convinced that prednisolone is not a major player in defeating PMR/GCA. I hated this drug for the first two and a half years, but as I began to recover, I totally re-evaluated it's part in my recovery. What state would I now be in without it's help? It would have meant PMR and GCA and all the inflammation they produced running rampent through my body.I can't help but feel that my health would have been wrecked for ever.

    Don't get me wrong, my skin is more fragile, my tendons and ligaments are a little 'iffy' and I'm out of condition, but, I'm only a few pounds over weight, my skin is like silk and my hair is as thick and shiny as ever. So considering I looked like an extra in the film 'Werewolves in London' at one point, that's not a bad outcome.

    I had my 1st flare whilst on holiday in Wales in 2011, and was lucky to meet a very experienced GP in Bangor A&E. He said he had quite a few patients with my illness and gave great advice on how and when to reduce the steroids (reduce when you feel good and go very easy on the drops!)

    One piece of advice stuck - he said when he had helped to get his patients down to the low doses and almost off the drug, he liked to keep them on 1mg or so indefinately. Why? To prop up the adrenal glands and stop PMR and or GCA from re-occuring.

    PS. I have always and still use ibuprofen to help with the drops.

    Personally, I will never push my body physically the way I did pre PMR because I know my adrenals are just not up to it.

    Best wishes, Pats.

  • Thank you so much for your input. I appreciate your taking the time to reply.

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