Connect
← Return to Has anyone with PMR been able to get off prednisolone?
Discussion
Has anyone with PMR been able to get off prednisolone?
Polymyalgia Rheumatica (PMR) | Last Active: Mar 24 11:39am | Replies (51)Comment receiving replies
I am wondering if anyone who has had PMR for a long time and has been on and off prednisone (P) as I have, has gotten off prednisone. I have been on and off prednisone for 35 years. About 18 months ago I went on Kevzara as was on 15 mg of P. I tapered down to 2.5 with no problems. When I went to 2 mg P I started to have paint and my rheumatologist had me hold at 2.5 mg P.
Again, my question is has anyone on the blog been on P for a long time (years) and been able to get to zero for a long time?
Replies to "I am wondering if anyone who has had PMR for a long time and has been..."
@jfannarbor
Yes .. according to my medical records, my Prednisone use has spanned "decades." I would estimate 30 years.
I was originally diagnosed with reactive arthritis and uveitis in the early 1990s at the age of 35. My very first dose of Prednisone was for uveitis. Anywhere between 60-100 mg of Prednisone was prescribed for every flare of uveitis. It was only a guess how quickly uveitis would go into remission so my ophthalmologist prescribed huge quantities of prednisone so I would never run out.
I was very adept at tapering off Prednisone when I was treating uveitis. I could always taper off Prednisone and achieve remission again in a month or two. I always had a lot of leftover Prednisone.
I routinely medicated myself for pain caused by reactive arthritis and also trigeminal neuralgia. These conditions were diagnosed but I didn't want to bother any doctors when I could treat myself. However, both these conditions aren't normally treated with Prednisone. I was on and off Prednisone many times just because I had a lot of pain. I stopped seeing all doctors because everything they offered for treatment didn't seem to work very well.
In 2007, I decided to discard all of the Prednisone I had stockpiled. Within a week or two, I was forced to see a doctor and eventually I was diagnosed with PMR on top of everything else. I thought PMR was a "blessing" when a rheumatologist told me to take Prednisone every day for PMR.
I took Prednisone every day for 12 years for PMR. Long term Prednisone was a curse when I couldn't taper off. I had one medical problem after another including secondary adrenal insufficiency during my 12 years of daily prednisone use for PMR
When my rheumatologist decided I couldn't take Prednisone for the rest of my life -- Actemra (tocilizumab) was tried on January 1st 2019. It still wasn't easy to taper off Prednisone but sometime in 2021, I took my last dose of Prednisone.. I'm still on Actemra but I have been Prednisone free for about 5 years.
My first Prednisone dose was probably at the age of 37. My last dose of Prednisone was at the age of 67.
Connect
@jfannarbor If you have been on it for 35 years I would suggest you talk to your Rheumy, Endo (if you have one) and/or your PCP about testing your cortisol. Tapering successfully is mainly about waking your adrenal grands up since long term use of prednisone puts them to sleep. I would not be surprised if yours have the "Do Not Disturb" sign out. You might want to do some research on prednisone and cortisol to better understand what is going on inside your body. Things we cannot see or feel are at work within us.