Prednisone Taper Stories

So great to read that we do best when we take control of our lives!! I’ve been with ra for 20 years and find that no one knows me like I do:) don’t quit questioning your care.. best wishes… Cheri 76 and plan to be around for a long while yet!!

@ruralgal76

EVERYONE READ THIS POST!!!
Put this on post-it-notes everywhere you can to remind yourself.
No matter what you have, you are your own best advocate.
I am 79yo female with PMR, and have had same experience.
Thank you Cheri

@oldflaguy69
I am 79 and just developed PMR last March. I absolutely detest prednisone, sure it helps with pain, but the side effects, in my case are destroying my life. I am at 7 mg a day now and receiving twice monthly injections of a biosimilar. So far I am worse off with discomfort and trying to reduce the Prednisone a mg every two weeks. No one seems to talk much about the attitude one develops with this disease but I, for one, feel that it is destroying my otherwise great life. Hang in there and check with local hospitals, as some have programs to make injections affordable.

@danboldman
I hve great success with Kevzara biologic. Got off prednisone easily.

@danboldman
Thank you for the good vibes….

I have never recovered from tappering down off Prednisone. 37 years all up. The first 27 years taking 25mg per day, and tapering after that. I am on 4.5mg now, and feel worse than i ever did. I can't lift myself up off the couch most days, unless i have a hit of 5mg extra for a few days. I believe i was more functional at a dose of 12mg per day. I am 62 now in endless pain, and lack motivation to do anything because of doctors and specialists stupid decisions to wheen me off Prednisone even further, just to protect my bones etc. Sure Paquin has helped me get to this tiny dose now, but compromising everything else.

I share the same question. I was diagnosed with PMR in November and it took a higher prednisone dose than most to remove the pain (max 50 mg/day). I’m now at 25 mg/day, split dose, but the pred is disrupting several other systems and I’m anxious to titrate off. I’ll see the rheumy again in a couple of weeks for my 2nd visit and will ask him as well, but am interested in the experience of this community. Personally, I believe living with some level of PMR pain is likely a more strategic choice than letting the prednisone wreak havoc with my endocrine, cardio, and other functions. Good luck to the OP and I will share what I learn from rheumy visit #2.

@gregmaka18 .

With you being on prednisone for so long and at a reasonably high dose, you are probably experiencing low to no adrenal function. The symptoms of low adrenals are definitely malaise and odd pains here and there. Some even say it mimicked their symptoms. You probably need to get with an endocrinologist or a primary care Dr who understands adrenal function, or lack of. The fact that you got down to 4.5 mg says that you probably have some adrenal function. It is a mater of waking them up. There is a lot on this website that addresses adrenal function. I only had a little bit of fatigue/malaise when I came down and eventually off prednisone. I did, however, have all the odd pains and some that felt like PMR but they did not last nor progress and that said , to me, that they were not PMR coming back. I am not sure, by your post, if you had PMR but what you most likely have now is prednisone induced adrenal insufficiency. I am not the Dr, however! Just my 2 cents. Good luck.

@petermccarville

I can't agree more!!!

I had a chance internet meeting with an amazing person who had an adrenal crisis because of her long term prednisone use. She wanted me to see an endocrinologist when I told her about my long term prednisone use. She could relate to everything I told her about all the difficulties I had with getting off prednisone. There wasn't much she could do but at least I was able to reverse course and I managed to get off prednisone. I had more problems with people who encouraged me to take prednisone for the rest of my life. I was never certain what "quality of life" that Prednisone offered to me.

The link below is the long preliminary dialog that I had with the person who had the adrenal crisis. We continued to exchange information via email before she died. I credit her with turning my life around. She renewed my quest to find an alternative to prednisone.
https://www.healingwell.com/community/default.aspx
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The endocrinologist I saw had a different perspective than my rheumatologist. However they both shared the common goal to get me off prednisone as soon as possible.

@kathy22wright
Ask your dr…..but, me thinks you need to taper at a dose until pain free BEFORE tapering again. 20% decrease. All info from my experience and Dr.
I am a 79yo female, fit and super active, on no other drugs or maladies.
It has taken me the full 2 yr cycle.
Others on this blog have multiple issues nd their stories might help……you might want to share your specifics.