Tapering Pains Body Response or PMR?

My mantra is there isn't any "best way" to taper off Prednisone.

There are some guidelines that are good but applying the guidelines doesn't lead to uniform results for everyone. My experience with Prednisone tapering is actually 30 years --- roughly 15 years before PMR was diagnosed and 15 years after PMR was diagnosed.

My first 15 years before PMR were characterized by high doses followed by a fast taper. I would take doses upwards to 100 mg and taper off in a month or two. I did these tapers countless times. I guess it depends on what condition is being treated because I wasn't treating PMR back then. Granted the high dose/fast taper approach didn't work after I was diagnosed with PMR.

My 15 years of taking Prednisone for PMR needs to be subdivided. The way I tapered for the first 12 years was unlike the last 3 years. The last 3 years introduced another variable called Actemra.

My first 12 years after PMR was diagnosed were painstakingly slow. I tried every way I could think of and nothing worked well. Predetermined tapering methods failed every time. I adopted the "depends how I feel method of tapering." It wasn't a predetermined method because I adjusted my Prednisone dose based on my symptoms. However, I tried to maintain a "stable dose" for long periods of time. My rheumatologist said a stable dose was more important than any tapering scheme.

My rheumatologist knew there were many factors to consider in my case. I wasn't a straightforward case of PMR. In my opinion there aren't straightforward cases of PMR because everyone has a different set of factors to consider.

A low cortisol level was another factor that was introduced after I got into single digits of Prednisone. My first referral to an endocrinologist was disappointing. I was on 10 mg of Prednisone. The endocrinologist said there wasn't anything she could do if I still needed Prednisone for PMR and my "other conditions." The endocrinologist referred me back to my rheumatologist but said I should come back to see her when I was on 3 mg of Prednisone.

A year or so later my rheumatologist wanted me to try Actemra which was a game changer for me. I tapered by 1 mg per month for the first 3 months ---10 mg to 7 mg in three months. Since I felt well I decided to taper faster --- 1 mg per week until I reach 3 mg. My rheumatologist referred me back to the endocrinologist when an a.m. cortisol level was low. I was told not to attempt tapering any lower than 3 mg.

My cortisol level improved after staying on 3 mg for approximately 6 months. The endocrinologist finally said my cortisol level was adequate but didn't know what would happen if I discontinued Prednisone. The endocrinologist said there wasn't any need to taper because 3 mg was a low dose and my cortisol level was adequate. I did a "countdown taper" --- 3 mg to 2 mg to 1 mg and zero in a week. I was at zero for a week the first time that I tapered off prednisone.

Things didn't go well and I needed to go back on 60 mg temporarily. The reason had nothing to do with PMR. Those other conditions I had during my days before PMR were still there so Actemra was stopped even though it worked well for PMR. When I tapered from 60 mg to 15 mg like I used to do before PMR was diagnosed, I got stuck on 15 mg again with PMR symptoms.

A rheumatologist, an ophthalmologist and an endocrinolgist all had different suggestions but eventually I was allowed to decide what I wanted to do. I wanted to go back on Actemra to treat PMR and to be off Prednisone. After Actemra was restarted for PMR, I went from 15 mg back to zero in 3 months.

My main point is -- there is no best way to taper off Prednisone. There are too many factors that are unique to every person to say a single way to taper off Prednisone will work for everyone.

I definitely agree with you that there is no “best way”, but…all other factors being equal…the people on here tapering more quickly or chasing a bouncing dosage ball also seem to be the ones having more issues. You published an excellent summary a few days ago on tapering considerations that should be required reading for everyone, starting with the requirement that unless PMR is definitely in remission, forget about trying to taper until it is.

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Has anyone been prescribed Methotrexate at all my consultant wants me to start this by injection but I have heard that the side effects can be severe

Thank you