Symptoms after you stop prednisone

Posted by ejhagerman @ejhagerman, Jun 16, 2024

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 find the Tylenol Arthritis works very well for me. I’m tapering off prednisone. I’m on 7.5 right now and doing ok. Good luck to you.

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I got off Prednisone for PMR after 21 months. I was also taking Kevzara and got off that a few months after getting off the Prednisone. Within a month of stopping the Prednisone I developed a trigger thumb. Then the other thumb also started triggering. They both froze in a straight position. I had surgeries to release them. My hand surgeon said it could possibly be a reaction after the Prednisone.
My hair thinned during the Prednisone treatment. Now that I’m off, it’s quite curly.
I also have developed bumps on my hands, mostly on the knuckles. Not sure what that is. They seem to be helped by cortisone cream.

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I ended up with sore knuckles as well. Finished prednisone 6 months ago. I also notice my legs are not as strong but I aspire to fix that with more exercise. Congrats to being finished. Cheers.

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I have been using Methylprednisolone since the start of PMR in December 2024. I started Methylpred at 20mg/day. Methylpred is just a tad stronger than regular prednisone. I tapered slowly and got down to 2mg/day with no problem. I took Extra Strength Tylenol at the decrease of the dose for just into a couple of days of my lower dose. Methylpred only comes in 4mg pills so I use a pill slicer. I can't slice lower than 1mg, so when I went from 2 mg to 1.5 mg I did alternating days of 2mg and 1 mg. Just a week into my alternating days, my body has changed quite a bit. I have some PMR pain, not too bad, and my original knee pain has come back with a vengeance, along with buttock soreness. I am having to climb stairs like a duck. I also started getting trigger finger in both thumbs. I decided to remain at 2mg every day to see if my aches improve. I am also taking extra strength Tylenol.

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Profile picture for aisp3b @aisp3b

I have been using Methylprednisolone since the start of PMR in December 2024. I started Methylpred at 20mg/day. Methylpred is just a tad stronger than regular prednisone. I tapered slowly and got down to 2mg/day with no problem. I took Extra Strength Tylenol at the decrease of the dose for just into a couple of days of my lower dose. Methylpred only comes in 4mg pills so I use a pill slicer. I can't slice lower than 1mg, so when I went from 2 mg to 1.5 mg I did alternating days of 2mg and 1 mg. Just a week into my alternating days, my body has changed quite a bit. I have some PMR pain, not too bad, and my original knee pain has come back with a vengeance, along with buttock soreness. I am having to climb stairs like a duck. I also started getting trigger finger in both thumbs. I decided to remain at 2mg every day to see if my aches improve. I am also taking extra strength Tylenol.

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@aisp3b
Try the Tylenol for arthritis….. my Rehumy put me onto it. It’s extended release.

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Profile picture for aisp3b @aisp3b

I have been using Methylprednisolone since the start of PMR in December 2024. I started Methylpred at 20mg/day. Methylpred is just a tad stronger than regular prednisone. I tapered slowly and got down to 2mg/day with no problem. I took Extra Strength Tylenol at the decrease of the dose for just into a couple of days of my lower dose. Methylpred only comes in 4mg pills so I use a pill slicer. I can't slice lower than 1mg, so when I went from 2 mg to 1.5 mg I did alternating days of 2mg and 1 mg. Just a week into my alternating days, my body has changed quite a bit. I have some PMR pain, not too bad, and my original knee pain has come back with a vengeance, along with buttock soreness. I am having to climb stairs like a duck. I also started getting trigger finger in both thumbs. I decided to remain at 2mg every day to see if my aches improve. I am also taking extra strength Tylenol.

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@aisp3b

I have the same thing in the buttocks and thumbs. I'm down to 1mg of Prednisone. My hips are also extremely exhausted. After walking through a store I feel like I need to sit for an hour. I'm also taking Tylenol Arthritis seems to help a little bit.

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Profile picture for Shirley K @chpfireball

@aisp3b

I have the same thing in the buttocks and thumbs. I'm down to 1mg of Prednisone. My hips are also extremely exhausted. After walking through a store I feel like I need to sit for an hour. I'm also taking Tylenol Arthritis seems to help a little bit.

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@chpfireball

Would it be possible to have your morning cortisol level checked while you are still on 1 mg of prednisone? Checking a cortisol level might be useful to help decide if Prednisone can be stopped. Any amount of Prednisone might interfere with your cortisol level but the lab test might still be useful. My endocrinologist said I would need to be on 3 mg or less of Prednisone before she would check my adrenal function.

Being extremely exhausted with normal amounts of physical exertion might be a symptom of adrenal insufficiency. If your cortisol level is low, you are also more likely to have a flare of your autoimmune condition.

A very low morning cortisol level (< 5 mcg/dL or < 150 nmol/L, depending on the lab assay) strongly suggests ongoing adrenal insufficiency and the need to continue a physiological dose (3-5 mg) of Prednisone.

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Profile picture for vbird @vbird

I got off Prednisone for PMR after 21 months. I was also taking Kevzara and got off that a few months after getting off the Prednisone. Within a month of stopping the Prednisone I developed a trigger thumb. Then the other thumb also started triggering. They both froze in a straight position. I had surgeries to release them. My hand surgeon said it could possibly be a reaction after the Prednisone.
My hair thinned during the Prednisone treatment. Now that I’m off, it’s quite curly.
I also have developed bumps on my hands, mostly on the knuckles. Not sure what that is. They seem to be helped by cortisone cream.

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@vbird I was diagnosed with PMR in March of 2025 and started prednisone. I have tapered and am now on 3mg. I see my rheumatologist in a couple of weeks and hope to continue to taper to zero. I have some pain but it is manageable with Tylenol. In the past two months my hair has started thinning. Could the prednisone be the cause even after all this time? It really bothers me.

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Yes, I am tapper down on prednisone and now have started getting hand swelling and pain especially in the morning. I have been running hot water over them and massaging them. That has taken a edge off the pain.

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Profile picture for csimmonds @csimmonds

@vbird I was diagnosed with PMR in March of 2025 and started prednisone. I have tapered and am now on 3mg. I see my rheumatologist in a couple of weeks and hope to continue to taper to zero. I have some pain but it is manageable with Tylenol. In the past two months my hair has started thinning. Could the prednisone be the cause even after all this time? It really bothers me.

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@csimmonds I was losing a lot of hair. I am now at 2mg/day and my hair stop falling out.

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