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advice on taper - can we really expect to feel as well as we did on the starting dose?

Posted , 8 users are following.

greentea26
greentea26

Hi- I started  a thread earlier today about having an atypical presentation which went undiagnosed for years but since this is a totlaly different question I thought I'd do a new post.

Basically I was started on 20mg which made me feel very well to the point I'd hardly know I had the illness. Intially reductions went well. if I had a blip I could easily relate it to overdoing things.

Once i got under 12 or so I started to feel slightly less well - though i did wonder if that was also something to do with the start of winter. Persisted with a slow reduction - did feel a little of the morning stiffnes creep in but not too bad. At 10 a had a flare which I think was causes by the central heating packing in - so not too worried and it didn't last long.

Then I had another one which was not so dramatic but without feeling dreadful I wake up every morning feeling i have PMR again.. the symptoms are relatively mild and they do usually  wear off as the day goes on but not always.

I went back up to 12 again but it hasn't really helped

Anyway - I have seen things on the froum saying you should aim for the lowest dose you can function on - which indicates I should persist with the slow reduction.

However lately I have also seem the opiinion that you should aim to feel as well as you did on the starting does. In fact I think I read that in quite a recent post from Eileen.

Just looking for any thoughts. I felt great at 20 or even in the highter teens but obviously can't stay at that forever or even for a long time

 

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  • greentea26
    greentea26

    Posted

    I meant to add that i wonder if I am not gving my increased dose enough time to work and make me feel as well as I did in the beginning. How long is reasonable to give it time to kick in?

     

  • EileenH
    EileenH greentea26

    Posted

    No - not merely "function", you use that original result as the guideline and once symptoms start to return it is a sign there is left-over inflammation. if you reduce further - there will be increasing amounts of inflammation left over.

    How long have you been back at 12mg? It does sound as if 12mg was where you needed to mark time for a bit - it isn't a smooth downward path I'm afraid. So if you let in a lot of inflammation below 12mg, 12mg may not be enough to clear out the overflow. You may need a few days at 15mg first to clear things out - and then you look for the dose that keeps it there. Several very good doctors say add 5mg to where the flare occured - clear things out and then reduce to slightly above where the flare occured and see how you go.

    It's often said that flares in GCA are common for the first 18 months - and that probably can apply for PMR too.

    • greentea26
      greentea26 EileenH

      Posted

      Having felt unwell again in mid Feb I increased to 11 and when that didn't really help after about 7-10 days (forgot to write things down this time) I went up to 12 which I have also been on for 7-10 without much differnce.

      Going by what you say i might need to try 15 for a few days. I would be happy enough to do that but how would I then come back down to just above where the flare occured? I do not leke the idea of reducing from 15 at the pace I did before if it can be avoided.

    • EileenH
      EileenH greentea26

      Posted

      There is no reason why you can't take 15mg for 3 or 4 days to manage the symptoms - and drop straight back to 12mg and then slowly try the next steps. You have to see if you are OK at 12 but you shouldn't have too bad withdrawal after only a few days at that level.

  • jean39702
    jean39702 greentea26

    Posted

    Greentea, I have felt the same confusion at times. Less so recently because I've come to realize that I have to be stable for at least a month on one dose before even considering a reduction. I've also become fairly confident in identifying PMR pain (always bilateral for me) from the various aches and pains caused by myofascial pain, arthritis, overuse of muscles, change in climate, etc..

    I identify a flare as bilateral pain which gets worse over time, often combined with a total feeling of unwellness.  For example, if I have increasing pain in my triceps, neck and upper back and shoulders I would accept that I'm in a flare and increase the prednisone until things settle down.

    PMR is a comples puzzle and it's often hard to put the pieces together properly. The puzzle is different for all of us.  It problem took me two years to figure out my own pattern of pieces for now, but I know it can change again.

     

    • greentea26
      greentea26 jean39702

      Posted

      Thanks - I know what you mean about the confusion between the PMR pain and other aches and pains.

      Also I think I am affected by weather/climate

    • EileenH
      EileenH greentea26

      Posted

      I think most people are - and apparently at least one doctor tells their patients not to try to reduce in the winter!

      Personally I think it is important to listen to your body and make notes if necessary to identify how YOUR personal version of PMR works.

  • barbara73592
    barbara73592 greentea26

    Posted

    Gosh. I am more confused than ever. I am on 7mg and trying out the dsns method but 

    have to say since coming down from the higher levels of Prednisolone I have never been pain free either. Like you I can function quite well. I have not had a major flare since reducing but I am stiff first thing and find by the afternoon that things are much better. I really do not want to increase dose to higher levels unless I have to as I have suffered terrible side effects with the medicine which are getting more tolerable as I reduce. I have read Eileen's post and as always find her points most interesting.

    Good luck.

    Barbara

    • ptolemy
      ptolemy barbara73592

      Posted

      Hi Barbara, I must admit I always feel I felt best when I first started pred, but I think that may be due to the fact that I had such awful pain beforehand, while that has not happened since thank goodness. So it is all relative. I am not sure how many people are completely pain free but I suspect not too many. We have an illness so we cannot expect to take pred and then to carry on as if nothing had happened. 
    • greentea26
      greentea26 ptolemy

      Posted

      Hi Ptolemy and Barbara

      it is all most confusing. I think though that once I'd reduced under a certain level I didn't feel totally pain free alll of the time - but I did for a good deal of the time and for the most part I felt like a well person.

      At the moment although the symptoms are not that bad compared to pre pred i do feel like the illlness has returned (yes I know that it would never have aactually gone.)

      In a way that i can't quite articulate I feel as if the inflammation has taken hold again even if the symptoms aren't awful.

       

    • barbara73592
      barbara73592 ptolemy

      Posted

      Hi there,

      I do agree. Like you when my PMR started I was in agony. So bad I thought I was heading for a wheel chair!  I have never been back there again and although have up and down days can live a normal nearly pain free life.

      Good to hear your point of view.

      Barbara

    • ptolemy
      ptolemy barbara73592

      Posted

      I think to a certain extent, in my case anyway, things can be better depending what is happening around me. I was driving past the park today and it was full of purple crocuses, the sun was shining and it really lifted my spirits. Also the banks at the side of the road were full of primroses. Really lovely. 
    • greentea26
      greentea26 ptolemy

      Posted

      Sounds beautiful

      Yes i think to some extent it can be influenced by outside factors

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