Posted , 11 users are following.
i know I have been exasperated, like most of you, with the tapering of the prednisone. Now, 2-1/2 yrs. into PMR I find myself back at 9m for the past month. Question: what if I just stay at 9m, forget the tapering and the flares? Will there be see other signs that I have entered remission, eventually?
1 like, 27 replies
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FlipDover_Aust kathy67492
Posted
Sounds like a plan to me Kathy!
As you know, I'm always questioning why we get put on pred, which we are told is it ONLY treatment, only to be put under pressure to get off it as quickly as possible, only to have vicious cycle of flares.
It's YOUR decision. Only you can know what's right for you. But I'm hearing you!
FlipDover_Aust
Posted
*it's the ONLY treatment
tpaggs kathy67492
Posted
That's a great question. I will ask my Rheumatologist next visit. I had been under the impression that as one reduces their steroids, the adrenal glands would start to function normally and the immune system would react positively; thereby correcting the inflammation problem. Apparently, I was wrong. So, if you are continuing with the treatment whether it be 9 mg or 2 mg, in my case, and are stuck there in order to be pain free, how do you know when you no longer need to be on steroids? The $64;000 question.
margaret22251 tpaggs
Posted
tpaggs margaret22251
Posted
I don't taper; 1/2 mg/day if I still get symptoms. It's only when I have no pain at all that I then try to taper by 1/2 mg. However, like I've mentioned before, I'm stuck at 2 mg/day. I can't seem to decrease to 1 1/2 mg/day.
Anhaga tpaggs
Posted
I haven't got there yet, but I assume you know when you've reduced to zero without a flare and have remained at zero for a while with no return of symptoms. Of course we will always be at risk of another bout with PMR. I don't know if it's true or not but I think once a person has an autoimmune inflammatory disease it's always with them. It can go into remission, hopefully permanently, but the possiblity always exists for a flare up. This is why we have to find ways to improve our lifestyle to avoid conditions which led to the original manifestation.
tpaggs Anhaga
Posted
The day I am down to "0" mg., I will throw a big party!!! I hope it happens in the not-too-far future as I'm getting up there in age.
Anhaga tpaggs
Posted
EileenH tpaggs
Posted
Misery guts is here to tell you several people stopped pred (so they thought) and in varying times between a couple of weeks and several months were revisited .
I'd wait a bit before the party to say I'd finished...
Anhaga EileenH
Posted
I no longer even project when that party may be. Quite resigned to the long haul now. But it would be nice to get the dose down to a vanishingly small amount, nearly as good as zero.
tpaggs EileenH
Posted
I can only pray that that won't be me. I'm believing for a total healing.
FlipDover_Aust Anhaga
Posted
I'm with you Anhaga - I'll be happy to just live a normal life, and if that means taking small doses of pred, then so be it. I'm ok with that.
I realise now it also means changing my lifestyle, slowing down, eating right, taking care of myself. Something I didn't do before I got sick. And I'm ok with that too :-)
Nefret kathy67492
Posted
PMR, your adrenals, Pred, and your whole immune system are sneaky little devils. So you have to be sneaky back. In other words, the slower you taper the better, which is what we all suggest on here, trying to get small reductions sneaked by your whole systems.
There are several really sneaky reduction plans available, I'm sure there are details of one on here - but we can give you chapter and verse if you want them.
kathy67492 Nefret
Posted
I tapered down to 7-1/2m, stayed there for 12 weeks...and was attempting to taper to 7m using the DSNS method. By the end of the month I had cut out 3m....over the course of 30 days!!...and I flared!! Takes me forever to recover from a flare...that is why I want to just stay at 9m for the next year!
Appreciate all the input😊
margaret22251 kathy67492
Posted
I do have problems but not a flare up, the problems are always pain in my temple and earache, but the doctor says i am ok and not to worry about GCA, so i dont worry.
Nefret kathy67492
Posted
So do it.........it would appear that 9mg is your current comfortable dose, and that is really the name of the game, finding the optimum dose which gives you a reasonably 'normal' life. Not sure I would want to stay a year though but six months would see you through the winter nicely. Whichever way you decide, make sure your doctors are informed.
The one thing I never did (after the first time) was to reduce when winter was on the horizon. I'm not a winter person and hate the icy cold days and the icy cold winds. Return Spring - all is forgiven!
Anhaga kathy67492
Posted
kathy67492 Anhaga
Posted
Maybe I did it wrong? July 1st, 7m...next 6 days 7-1/2m....July 8th, 7m....next 5 days 7-1/2...July 14, 7m...next 4 days 7-1/2m...., etc....I was "making the switch" to straight 7m...then on July 28 I was a mess....doing my "regular" activity level. That amounts to depriving myself of 3m over those 28 days....doesn't seem like much!😊
Anhaga kathy67492
Posted
Oh I misunderstood. I thought you meant you had dropped 3 mg per day by the end of the taper. I must say I've never tried to work out how much pred I've taken, or not taken as a result of tapering!