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recovery ?

Posted , 12 users are following.

carol_ann35477
carol_ann35477

HI,  over the past 2 weeks I have felt increasingly, stronger, less fatigued, and less mental fogginess.   2 days this week I went out shopping and stayed for about 6 hours.   Over the past 2 years,  If I could shop for an hour without having to go home to go  to sleep I was lucky.   Does this mean that the polymyalgia has resolved and I have recovered.   Has anyone else experienced this?   I am still on Prednisone which was started when they finally gave me a diagnosis in March, 2017.   I have been up and down from 20 daily, with not much success at decreasing it.   I am now on 17 and have had no problems with this small decrease using the slow method.  I am assuming that because of the nature of prednisone that I will still have to continue with this slow decrease, but thought I would check with those of you who have and are experiencing this disease.    I do not see my rheumatologist until May, although I know he would see me earlier if necessary.   However to be honest although I do like him very much I trust your direction on this a bit more than his.    Thanks so much for your input.

Merry Christmas to everyone.

1 like, 12 replies

12 Replies

  • Anhaga
    Anhaga carol_ann35477

    Posted

    The only way you will know if PMR has gone into remission i when you taper (slowly) to 0 and have no return of symptoms.  At 17 mg you should be feeling well, it means the pred is doing its job!  I thought I was maybe in remission when I got to 1.5, but an attempt to go to 1 showed me otherwise. cry  I'm a bit curious why you have only reduced by 3 mg since last March, however.  Were you trying to drop several mg at a time and finding that too difficult?  Glad you are on a slower taper now.  It's usually easier to reduce to 10 and more difficult thereafter as you approach the level of cortisol the body naturally makes, and the tapering steps become a larger percentage of your dose (1 mg from 17 is a lot less, proportionately, than 1 mg from 10).

    • carol_ann35477
      carol_ann35477 Anhaga

      Posted

      Hi Anhaga

      Yes I had been trying to decrease by several mg. as the Doctor ordered,  but found I would just feel even worse,  so then I would go back to the  20 for a few weeks until I felt better and then try again.   It was not until I found this site and then saw the slow taper method that I understood that I could just being tapering to much.   However I have never felt this well for at least 2 1/2 years,  and did not think I would feel this well until the disease process was resolved, even on the prednisone.   Thanks for your input,   I will be watchfull as I taper,  and not try to go down more quickly just because I am feeling better.

       

    • Anhaga
      Anhaga carol_ann35477

      Posted

      Good!  It's tempting, I know, and many of us have been lulled into this state of believing we are well, which just goes to show what a great treatment pred is, for all its problems.  Glad you have found a method which is working for you now, and remember, we are all different, so if you ever need to tweak the taper plan you are using, feel confident that you can, to meet your own particular needs.  I went a little faster at higher doses, but much more slowly later on, the "dead slow nearly stop" plan became for me much more "nearly stop"!  So it took me something like a year to get from 3 mg to 1.5.  And, sadly, I'm now at 4 again, slowly tapering to 3.5!  Short term is something PMR isn't.

    • Oregonjohn-UK
      Oregonjohn-UK carol_ann35477

      Posted

      It is recommended that you do not reduce by more than 10% of your present dose e.g. 17 mg would be 1.7 or 2 mg to be safe.  Once you get to 10mg (10% would be 1 mg) it does get difficult as you are approaching this point, and lower, because your adrenal gland is starting to 'wake up'.   It is very important you do this very steady as it may not be ready - it does vary with each individual person – so go slow over this period of time.

  • EileenH
    EileenH carol_ann35477

    Posted

    There are various reason you may be feeling better - and one is obviously that the PMR has gone down in activity. If that is the case then you should be able to reduce rather more easily from now on. 

    I feel really well on pred - and at 17mg, as Anhaga says, you should feel pretty good. And to be honest - I'd say it could well be due to the fact that you are now not yoyoing the dose - which can't be good for a body! If only doctors would let patients reduce really slowly and steadily they'd probably find they need less pred overall - no flares need happen. There are doctors apparently who believe flares are an inevitable part of PMR! Not so!

    How long is it since you started DSNS?

    • carol_ann35477
      carol_ann35477 EileenH

      Posted

      Thanks for your reply.   The thing is that I have not felt well for so long even with the prednisone, but you are right that this is the first time that the dosage has not been yoyoing since I got ill.   They had me on and off it for the first year and a half before they finally diagnosed it.   Then the reumatologist started me on 15 and wanted me down to 10 quickly which did not work.   After finding this site and doing a lot of reading I decided to see how I would respond to 20 mg.   I did better but certainly not as well as now,   reducing it has been a difficult process but I am now down to 17.   To be honest I do not care if I cannot reduce it if I can stay well for a bit.   I understand the side effects, but the illness is not nice either and I prefer some quality time now and am willing to accept the risk of the side effects.    My problem and concern is that the Drs. will not agree with me, however I will wait and see.   They all want me off it.

      Sorry Eileen but I do not know what the initials DSNS stand for.

      Thanks again, Carol Ann

    • EileenH
      EileenH carol_ann35477

      Posted

      Dead Slow and Nearly Stop - the slow taper method you said you saw here so I assumed you'd recognise it.

  • bjmoen
    bjmoen carol_ann35477

    Posted

    Where can I find a print out of the DSNS method?
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