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Symptoms after you stop prednisone
I was diagnosed with PMR in April, 2023 and prescribed 15 mg of prednisone tapering monthly until completely off by May, 2024. Understandably, my previous osteoarthritis symptoms and pain returned in my knees and lower back. Over the last year, I presume that the prednisone masked that pain. However, when I tapered to 1 mg, my hand joints swelled (which is new), I have a trigger middle finger in my right hand, and I experience some discomfort in my shoulders in the morning. In June, 2024, I had blood work and my Sed Rate and C Reactive Protein results were in the normal range. Has anyone else experienced hand swelling after tapering off prednisone or other new symptoms (not reflected in your lab results)? When are these new symptoms concerning and how did you treat them?
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I have been on Prednisone for 4 years. Started on only 10 mgs but had several flares along the way. Finally got down to 1/2 mg for about 2 weeks then stopped about two weeks ago. I have no more PMR pains, but the withdrawal from Prednisone is awful. Lethargy, no appetite, nausea, etc. I've lost weight. Being an older adult (82), I'm wondering how long it will take for the cortisol to start working again.
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2 ReactionsAre you seeing an endocrinologist? The treatment for adrenal insufficiency can be low dose prednisone but hydrocortisone is preferred. My endocrinologist told me to stay on 2-3 mg of Prednisone for "as long as it takes" for my cortisol level to improve.
I had the same symptoms which gradually improved over time. I have lost weight but that isn't a concern. I'm working at losing more weight by exercising more. I'm not as lethargic as I was.
I was diagnosed with PMR in November 2022 at 58 yrs old, and started on 20 mg/day. I ramped down by November 2023, but it was apparently too quick and had a PMR flair. So I went back up to 5mg and dropping about 1 mg/month with now about two months on 1 mg/day. Hopefully my doctor will take me off it completely this week.
My Lessons learned:
1) go slow on tapering down. Even very slow as my body got used to the prednisone.
2) as prednisone drops, the old aches and pains come back. As my ortho told me “your joints are going to start barking at you again”. They do.
3). Go slow back into exercise, but move. Mostly biking, weight lifting, walking and water aerobics. Feel much better.
4). Hand swelling is a sign of inflammation for me. Usually triggered by alcohol. Bummers.
5). Not sure it’s related, but trying to drink a lot more water. Up to about 12 cups a day. Feel better.
My hand swelling is sort of my “canary in the coal mine”….
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4 ReactionsI never got off of prednisone until went on dexamethasone. So now dexamethasone 1 mg twice a day. Goal 1 mg a day. Aches pain and sleep best control I have had. Almost 4 years into this. I am 82. I want mobility over aches pains and decreased function. This site has helped me so much.
I am on day 2 of tapering from 10 mg to 7.5 while transitioning to hydroxychloroquine. On 10, I had shoulder soreness but now it's worse and the back of my legs are also sore again. At least I still am mobile but feel more stove up or stiff. I'm really struggling and miss how I felt on 20 MG. Ugh.
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