recovery ?
Posted , 12 users are following.
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
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. 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 Anhaga
Posted
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 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 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 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 EileenH
Posted
Sorry Eileen but I do not know what the initials DSNS stand for.
Thanks again, Carol Ann
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.
Flutterbie57 carol_ann35477
Posted
Merry Christmas.
bjmoen carol_ann35477
Posted
Anhaga bjmoen
Posted
google healthunlocked dead slow nearly stop. It's somewhere on this site too but can't find it just now.
EileenH bjmoen
Posted
If you go to this page:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
it is in the first post in its own right and also in the replies to the third post which is our resources post and I thought you might find it useful too.
bjmoen carol_ann35477
Posted