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Has anyone else had pain return after reducing pred by only 2.5 mg?
I'd been taking 15 mg of prednisone for two months after being diagnosed with PMR in early August (I am 62). I saw my doctor a couple of weeks ago, and he suggested I start trying to slowly taper off the prednisone. I started by cutting down to 12.5 mg a day (his recommendation), but within a week, my pain levels have increased again. I can't believe just 2.5 mg could make such a difference! It's not anywhere as bad as it was before diagnosis, but it's enough to be uncomfortable, and make my arms and legs stiff and sore throughout the day. The doctor did hint that the tapering might not work and that I may have to stay on 15 mg for a while longer.
My big concern is the bone thinning side effect of being on prednisone indefinitely. I already have osteoporosis. My doctor said I should be taking a biophosphate, but last time I tried taking those medications I ended up with stomach upset. So I feel like I'm screwed -- stuck between a choice of living in pain without the prednisone, or taking the prednisone for months/years and having my bones deteriorate and break down. I take calcium and vitamin D, and exercise every day, but I am not convinced that this is going to offset the effects of the prednisone. What have others done to help mitigate the bone thinning effects of long term prednisone use?
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Actemra is FDA approved for GCA only.
Kevzara is FDA approved for PMR only.
Either of these biologics can be used in the United States if a patient has both PMR and GCA. Both biologics are expensive so they are not used very often unless there are "extenuating circumstances." Having a diagnosis of osteoporosis would be an extenuating circumstance.
You really shouldn't be on prednisone with known osteoporosis unless it is for the shortest amount of time as possible.
https://creakyjoints.org/living-with-arthritis/treatment-and-care/medications/guidelines-to-prevent-osteoporosis-from-steroids/
Being a relatively young male when PMR was diagnosed, my risk of osteoporosis wasn't too high. I was somewhat embarrassed whenever my rheumatologist wanted to check my bone density. However, I had other complications from long term prednisone use.
My "extenuating circumstance" was long term prednisone use and no other alternative medication worked well. After Actemra was started, I got off prednisone and several other medications which were being used to treat prednisone side effects.
These biologics don't work for everyone so that's why I usually say it depends on every person's individual circumstances. I should add that it also depends on your health care systems, insurance companies and governments.
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2 ReactionsAt present, I have no choice but to take prednisone, even with osteoporosis, since it's either that or live in excruciating pain from the PMR. I am doing everything I can to help mitigate further bone loss -- I am on a bisphosphonate medication (one tablet weekly) and am taking a high end calcium supplement and 2,000 IU of vitamin D a day. I eat as many calcium-rich foods as I can and get daily weight-bearing exercise in the form of walking and Tai chi. There's not much more I can do except hope for the best. However, I will definitely ask my doctor about any alternatives to prednisone if it seems like I'm going to have to stay on some kind of PMR medication over the long term, which I likely will. I've been taking 15 mg of prednisone a day for almost three months now, but am now trying to taper down by 1 mg at a time. Hopefully, I'll be successful with that, although it's going to take a long time.
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3 ReactionsAsk your Dr. To prescribe 1 mg. Tablets. That’s what I take sling eith one 5 mg.. Started at 15 now down to 8.5.
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