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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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Hi Charlotte, I did exactly the same taper and my pain was back terribly. I went back up for a while to minimize the pain and now I just go down by 1 mg. each month. So far so good. Better to take it slowly and succeed rather than go too fast and have that awful pain and stiffness come back.
Lynda
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3 ReactionsThanks Lydia! I thought of going down by 1 mg a month, but don't think I can cut up the pills that small. Each one is 5 mg. But it's definitely worth trying so I'll make it work somehow!
Sorry -- Lynda, not Lydia!!!
When I went down from 20 (10 morning and 10 evening) to 17.5 only in the morning at my rheumatologists insistence, my pain came back, so I went back to 10/10 and all was well after a couple of days. After two weeks, I then went to 10/7.5 and that went well for the next two weeks. My next taper was to 15 (10/5) and again the pain returned, so went up to 10/6.25 and felt better after a few days (only new issue was wrist/finger pain at 3/10 scale). After two weeks went to 10/5 (again only wrist/finger pain). After two more weeks I went to 8.75/5 and a few days later was very stiff with overall pain of 3/10. I took an extra 5mg pill when I got home and went back to 10/5 for a few days and was better (still wrist/finger pain). Yesterday I started a new taper, but decided to try 10/3.75 dose. I have a rheumatologist appointment today and see how that goes.
As Lynda said, and a lot of members agree, best to go more slowly on the taper to avoid flares. A lot of people agree that a 10% drop should be max.
As far as the bone thinning I'm on calcium/D3 (per doctor) as well as K2 per this site and others. Will discuss having a bone test/scan today as well to establish a base line.
Terry
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1 ReactionThanks Terry! It certainly sounds like the tapering has to be done by extremely small increments. I saw my naturopath this afternoon and we're working on a program of how I can gradually lower my dosage of prednisone without flareups, by using a few anti-inflammatory supplements and some dietary changes. Only time will tell if this works.
I would ask your doctor or rheumatologist for RX of 1 mg, 2.5 mg tablets to go along with what you have. It makes tapering at smaller amounts much easier.
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2 ReactionsGood idea -- thanks John!
I'm just saying, but I think coming down 2.5 ml at one time is a bit much. I had to retreat to a quarter ml decrease before I could stand decreasing my dose. It worked for me and after four years I have at last made 1 ml a day. I feel confident I can reduce this further and soon. Keep trying what ever works. I put faith in my doctors direction not to tough the pain out but retreat a little and wait for a better day. Will keep you in my thoughts and hope for the best for you.
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1 ReactionHi Charlotte, While I don’t have osteoporosis , I have osteopenia and was concerned about prednisone’s bone thinning side effects. My recent bone scan indicated that I was still in the osteopenia range but trending closer to osteoporosis (I have been on prednisone since May, 2023). My rheumatologist recommended a 35 mg dose of alendronate (fozamax) which is half the dosage give to those who have full on osteoporosis. Maybe this smaller dose would work for you along with the calcium supplements, vit. D and vit. K. I agree that the overall side effects of prednisone can be off putting BUT balanced against the pain and debilitating effects of PMR I became a believer. I too am at the prednisone tapering phase, albeit very slowly. One mg per month for 10 months will hopefully get me to zero 🙏. Definitely get your dr. to write you a script for one mg prednisone pills along with the 5 mg pills. Good luck and have patience. Liz Ward
Thanks so much, Liz! Glad the tapering at 1 mg a month is working for you!