Getting down now

After three and a half years I finally came off pred about three weeks ago, after speeding up my tapering down as instructed by my rheumy. I did this with some hesitation because I was beginning to get the pains in shoulders, arms and lower back again. My rheumy told me he had doubts about the PMR diagnosis and said he thought it was fibromyalgia.

For many weeks now I've been having to take maximum doses of paracetemol, codeine phosphate and Lyrica because the pain has become as great as it was before the original diagnosis, three and a half years ago. The only thing giving me a little comfort was the thought that I was off of steroids at last.

I saw my rheumy today. He asked me how I was and after hearing what I had to say he then told me that my last two or three blood tests had indicated slightly raised inflammatory markers (yet he had insisted I continue to taper off the pred despite my telling him about the flare up). He ordered yet another blood test and told me to start up on pred again at 15mg per day.If the symptoms have gone in two weeks, he says, then I do have PMR. If they are still there after two weeks then it's something else and they'll have to carry out further investigations.

I'm reaching the end of my tether, there seems no end to this wretched illness!

9 Replies

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  • So sorry to hear that you are not well. Hope you will get rid of the pain at least.

  • GreyOwl, oh dear, I'm not surprised you feel at the end of your tether. Unless he had extra fears over your health for some reason, why on earth would a rheumy advise someone to reduce their steroids faster especially through the lower doses when it's quite obvious that the lower you get on the steroids, the higher the percentage drop, and the more likely that the body won't be able to cope with the withdrawal? And then for him to admit that your last two or three blood test markers had shown increasing inflammation - however does that fit in with him suspecting Fibromyalgia rather than PMR when Fibromyalgia is not an inflammatory condition and therefore unlike to produce raised blood markers?

    It may be some comfort for you to hear that at least now back on 15mg Pred after such a short time of stopping, will hopefully nip the increasing inflammation in the bud very quickly, relieving your pain, and should enable you to reduce from the high doses a little sooner this time around. Do demand repeat blood tests before reducing. I have come across a couple of patients who have been in a similar position to you, having to re-start steroids, one was recommenced on 10mg and the other on just 5mg - both are doing well. So chin up, do keep in touch and we hope to hear better news from you soon.

  • I think your rheumy is trying to do a trial of steroids to get a definitive diagnosis. If you have a miracle response to your 15mgs then you get PMR written in your notes and no-one mentions fibromyalgia again. It might just be worth these weeks of discomfort to have your diagnosis confirmed once and for all. PMR does not respond to all those non-steroidal drugs as you have discovered.

    The good news is that if Pred works wonders you will be able to drop your dose pretty quickly to where you were last pain free.

    I had an ignorant GP suggest I was "addicted to steroids" when I've got GCA with optical symptoms. It is pretty infuriating. Grab those steroids and get well soon xx

  • That is just so unwarranted and uneducated for a GP to say that with GCA in the picture. Sometimes I feel we are more educated than the practitioners! Get a grip GP and a book!

  • Hi greyowl I see your letter was 5mths ago so hope you have it all sorted now, I feel just the same as you I don't think they really know these consultants, well some of them, I've only just started with all the pain and stiffness since last April 2015, consultant said not confirmed yet that it could be vasculitis MPA with Anca and MPOantibodies, then I saw a a different consultant as mine was on holiday, he had a look at me and said it was vasculitis with PMR and put me on 20mg steroids straight away within 5days I felt wonderful, went back to see my other consultant after 3mths he reduced steroids pain came back terrible, he upped them again but didn't make any difference, so now he is saying it's not Pma and he doesn't think I've got vasculitis either, but esp levels are still high with Anca and MPO still, like you I want an answer to it all fed up not mowing what's going on.

  • I would have no faith in that Rheumy after three and a half years.

    I would be seeking another Consultant.

    What dose where you on when you stopped your Pred?

  • I had tapered down to 1ng every other day.

  • You seem to have been particularly unlucky with your rheumy and I agree finding another would be a good move - unless, of course, having been proved wrong he is less silly next time! It's no good, I have to say it: What a stupid person. The last place you encourage your patient to reduce quicker is in the final stages - you should be rejoicing with them that under 5mg is doing the job. And if the inflammatory markers are rising into the bargain that's even more reason to slow down. Not only does fibro not respond to pred - it doesn't usually come with raised inflammatory markers and he should have known that.

    As has already been said - at least you should be able to go back to well under 10mg very quickly. What was your last dose where you were comfortable? Obviously not just 1 or 2mg. What is particularly annoying is that you have this resurgence of pain just because of him - what on earth made him think it was fibro at this late stage? He should have looked for the other answers beforehand.

    Anyway - hopefully by the weekend you will be feeling much better - but it may take a bit longer than the first time to get back to where you were. Do hope not. I did have a massive flare 3 years ago (for various reasons and not a loony rheumy) but when I was switched to a different form of pred I had the same miracle response I had at the start of pred so it is possible.

  • Well, two weeks, and more, since I went back on to pred at 15mg and much of the pain has gone. In fact, I started to feel an improvement on day 2!

    I'm still taking the pain medication though so not sure how I would feel without that. But at least I can wake in the morning relatively pain free and life is worthwhile once again. And isn't it so right that the medical profession should listen to the patients now and again? I cannot say categorically that if I'd been allowed to continue my slow tapering then I would be off pred now with no relapse and I'll never know but I'm damn sure i won't be straying from my own regime any longer, despite what the rheumy might say!

    So another few months on pred, at what cost to myself and to the NHS? I'm pretty sure he's going to talk about methotroxate at my next appointment in six weeks or so. To put it bluntly, I think I'll tell him where to stick it!

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