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Update on my journey with pmr

Posted , 9 users are following.

derek98287
derek98287

Hi all, been about 6 weeks since I last posted, at that time I was on 15mg and still had some minor morning stiffness but generally good and had started exercise swimming). Rheumatologist had suggested tapering down to 12.5 for 6 weeks and then to 10mg. After discussing with my GP and with some of you I decided to do this in stages starting with 14 mg for 2 weeks then 13 for 2 weeks then down to 12.5 while on a short holiday. When I returned from Vienna on 20 March I reduced to 11.25mg (plan is to go down to 10 in a couple of weeks and ahead of next Rheumatologist appointment at end of April. So I dropped to 14 on 13 February, within a week I was completely pain free - I assume due to pred finally having dealt with the inflammation. 2 weeks later down to 13 and still pain free. Then 2 more weeks 12.5. After a week or so on that I noticed some slight hip aches, this feels like joint rather than the pmr stiffness though and seemed worse when walking a lot. As of today though on 11.25 since Tuesday this pain has gone but I did notice a very slight stiffness in my shoulders first thing but this went quite soon after getting up. Could this be just withdrawal? I’m going to percevere for a while anyway but one thing I’ve noticed since starting reduction has been a feeling of anxiety (not accustomed to this) it can be quite bad when it comes on but I’m still able to overcome it at present and I suspect it’s made worse by the general uncertainty of this illness (ie could it be something even worse despite X-rays and DEXA scans and blood tests all coming back fine) and the lack of real support and knowledge from Drs, which is why this forum is so useful. Is this something others have noticed when tapering? I am conscious that you have to be careful in attributing everything to pred as that can just encourage the rush to get to lower doses, the Rheumatologist wants me to reduce by 1mg a month after 6 weeks on 10, which maybe a bit fast?

0 likes, 7 replies

7 Replies

  • Daniel1143
    Daniel1143 derek98287

    Posted

    Derek, everyone’s journey is different.  Thus far, it sounds as though you are taking a sensible approach. If you start having PMR symtoms at a certain level, stop there.  Sometimes you my have to move up half a mg or so.  But don’t push it.  Your body and your PMR are stronger than your will. We all find our levels and our plateaus.  I got to 10 mg fairly easily.  Stuck there for a while.  The down to 8,7,6. Thought I was headed to zero.  Wrong.  Getting to 5 took months.  I did finally get to zero after about 21 months of tapering.  Oh, I still have PMR, swollen hands and I still flare.  I just can manage without prednisone 

    patience to the patient

    • BettyE
      BettyE Daniel1143

      Posted

      Not sure of the numbers but my  guess is that there are few PMR patients who get to zero in a smooth line. My first serious sticking point was 10 where I stayed for three months.  It's a play it by ear game for most of us I did get there in the end but it took five years.

      High doses of pred. did give me anxiety symptoms which eased when I took my pred. at night instead of breakfast.  Whether I could have gone back to morning pred. at the lower doses I don't know.

  • EileenH
    EileenH derek98287

    Posted

    Others have commented they feel anxious as they reduce and it does seem to improve. 

    Hmmm - I'd reserve judgement on his desire to reduce at that speed from 10mg. As long as he DOES realise that he isn't heading relentlessly to zero and you may get stuck it may be OK. But at 10mg 1mg is the absolute maximum and 1/2mg at a time is mostly quite enough. You have done so well so far - it would be such a shame to spoil it!

  • Anhaga
    Anhaga derek98287

    Posted

    Yes, I'd say 1 mg a month could be fast.  I was able to do it, but only by following the dead slow method of tapering, and once I got to really low levels I was tapering by only .5 at a time and taking six weeks to do it.  Despite this cautious approach I still flared when reducing to 1 from 1.5 and after about ten months just back to 2.5.  So slowly, slowly, is the key.  Low dose pred is not likely to cause any untoward side effects so my plan, as much as one can have a plan with PMR/pred, is to keep on gently poking the dragon by attempting cautious tapers until it feels safe to proceed.  Have been on pred since June 2015.

  • derek98287
    derek98287

    Posted

    Thanks all. As the only obvious side effects from the pred I seem to have so far are the anxiety and possibly taking slightly longer to fight off infections (or getting infections at all) I’m keen to get down to 10 if I can, but not at the expense of a return of the pmr symptoms. After that I won’t be rushing just to please a rheumatologist. Thanks again for all the helpful comments. 
  • derek98287
    derek98287

    Posted

    Hi again just coming back on this because having got to 10mg in stages I decided to try a small drop to 9.5 as I’ve had no return of pmr symptoms but have had some annoying side effects. So I thought I’d try a small reduction again before the Rheumatologist tries to get me to do more next week. I dropped 3 days ago, no difference on day 1, day 2 (yesterday) felt a bit tired but that’s all, but today light headed, really tired and suddenly start sweating and feel hot to the point need to sit down. It’s come and gone all day. No muscle/joint pains or stiffness (yet). Could this be due to reducing too soon? Are these the kind of withdrawal symptoms others experience and can 0.5 reduction do this? I could of course just have yet another bug coming on but generally don’t feel like this. 
    • EileenH
      EileenH derek98287

      Posted

      It may be you are just getting to the stage where your adrenal glands have to start to work again - be patient and see if you start to feel better over the next week or two. And yes - 0.5mg can make a big difference!
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