Any side effects after going off prednisone slowly?

Posted by lindaadel @lindaadel, Nov 11, 2023

After being on prednisone for seven months starting at 10 mg and going down every three weeks I have taken my last prednisone pill today that was 1 mg. Should I expect any withdrawal side effects etc.?

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Were you taking the prednisone for PMR? 10mg is an unusually low start dose for it.

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@lindaadel, Seven months is not a long time for PMR. I don't think it's a matter of withdrawal effects but if your pain is controlled when you are taking prednisone for your PMR and it comes back when you stop taking prednisone it's more of a sign that you still have PMR and it's not gone into remission. Do you keep a daily pain log along with the dose of prednisone for the day?

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I didn't have any side effects at all.

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I’m on 1/2 mg of prednisone until the end of this month, then I will have completed my regimen. I found an extremely helpful post : @deejayc ‘My Story May Help’ that guided me through the final phase of PMR. Once you no longer have PMR (which is verified with your recent SED rate results) you may still experience some discomfort and stiffness. This is the process of the symptoms gradually subsiding to the point you no longer feel discomfort, which can take 6 weeks or longer. As long as the pain/stiffness doesn’t become more intense, ( you flare), then you may be experiencing the discomfort that higher doses of prednisone was masking. It certainly is working that way for me.

In Good Health

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I, too, started at 10 last April and have a few more days at 1, then I am done. Crp in early Oct was 1.9 and ESR was 2. ESR at it’s worst was high normal though CRP was in the 30’s. My rheumy wanted me to start higher but I talked him into 10, knowing less is more with me and I was going to do everything complimentary I could (and I did.) I am feeling very good, though I have a little soreness here and there from time to time but I am also trying to stay very active. Before I would have just ignored it. Pmr made me a little paranoid so I pause with each little ache and wonder “should I worry?” But I think not as they are minor issues and after all, I am almost 72, still work full-time, can still jog and can get in and out of the bathtub easily, something I could not do when this was at its worst. A couple of fingers in my left hand are still a little stiff at times, something that started with pmr… hoping will go away completely some day and knees a little stiff but overall very happy with where I am. I had a very bad case of pmr. My pain was a 20 of of 10….and I am not a conplainer.

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@freeme

I, too, started at 10 last April and have a few more days at 1, then I am done. Crp in early Oct was 1.9 and ESR was 2. ESR at it’s worst was high normal though CRP was in the 30’s. My rheumy wanted me to start higher but I talked him into 10, knowing less is more with me and I was going to do everything complimentary I could (and I did.) I am feeling very good, though I have a little soreness here and there from time to time but I am also trying to stay very active. Before I would have just ignored it. Pmr made me a little paranoid so I pause with each little ache and wonder “should I worry?” But I think not as they are minor issues and after all, I am almost 72, still work full-time, can still jog and can get in and out of the bathtub easily, something I could not do when this was at its worst. A couple of fingers in my left hand are still a little stiff at times, something that started with pmr… hoping will go away completely some day and knees a little stiff but overall very happy with where I am. I had a very bad case of pmr. My pain was a 20 of of 10….and I am not a conplainer.

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Thank you so very very much for your reply!!! I find it very helpful and I really appreciate it!!!

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@freeme

I, too, started at 10 last April and have a few more days at 1, then I am done. Crp in early Oct was 1.9 and ESR was 2. ESR at it’s worst was high normal though CRP was in the 30’s. My rheumy wanted me to start higher but I talked him into 10, knowing less is more with me and I was going to do everything complimentary I could (and I did.) I am feeling very good, though I have a little soreness here and there from time to time but I am also trying to stay very active. Before I would have just ignored it. Pmr made me a little paranoid so I pause with each little ache and wonder “should I worry?” But I think not as they are minor issues and after all, I am almost 72, still work full-time, can still jog and can get in and out of the bathtub easily, something I could not do when this was at its worst. A couple of fingers in my left hand are still a little stiff at times, something that started with pmr… hoping will go away completely some day and knees a little stiff but overall very happy with where I am. I had a very bad case of pmr. My pain was a 20 of of 10….and I am not a conplainer.

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Hi you and I are on a very similar time schedule. I had my last prednisone 1 mg last Saturday. my rheumatologist does not believe in medication unless the pain is intolerable. my next appointment with her is February. if I’m not in too much pain I would rather not be on medication either because most of it is not the greatest for your body..
I am just going to take one day at a time and see what happens. each of us reacts so differently to PMR it’s amazing. i’m so glad that you were doing so well what exactly are you doing that is complementary .I would like to try anything I could to help me with the pain that I have which isn’t horrible but it isn’t great either. I am 78 years old and try to do some exercise but a lot of it is very hard to do for me so I do the best I can do. my very best wishes to you!!!

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@lindaadel

Hi you and I are on a very similar time schedule. I had my last prednisone 1 mg last Saturday. my rheumatologist does not believe in medication unless the pain is intolerable. my next appointment with her is February. if I’m not in too much pain I would rather not be on medication either because most of it is not the greatest for your body..
I am just going to take one day at a time and see what happens. each of us reacts so differently to PMR it’s amazing. i’m so glad that you were doing so well what exactly are you doing that is complementary .I would like to try anything I could to help me with the pain that I have which isn’t horrible but it isn’t great either. I am 78 years old and try to do some exercise but a lot of it is very hard to do for me so I do the best I can do. my very best wishes to you!!!

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I do supplements including Turmeric, fish oils, magnesium and B vitamins. There are more but those are sone of the main ones. I am also getting b-12 shots. My level was very low normal at the start and I could feel the difference in the pain in my arms immediately. I do HBOT several times a week. I happen to own one, which we purchased a number of years ago to help with a daughter’s issues. They are expensive. Depending on where you live, you can probably find a place you can purchase a package. It is not the medical grade but I think 98%. I also have a pemf mat that has some coils that came with it that I initially wrapped around my arms. Now I am just using the top and bottom mats. I take epson salt baths. I literally had to drag myself out of the tub at first, with extreme difficulty but can do it normally now. And I have used coffee enemas for the anti inflammatory benefit of the glutathione it creates. My pcp gave me some glutathione oral spray but it left a horrible taste in my mouth. Early on, I also used a sound beam machine. I plan on continuing all of these, except the sound beam, just not as frequently. Last pill was today. Best wishes to you.

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Thank you so very much for your great information!!! I wish you the very very best with your PMR!!!

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Same to you. I am off prednisone as of today. My goal is never again. It was so bad I was also mentally exhausted because literally every single move required me to think about how I was going to do it before I started, then I would have to talk myself through it. “Ok, you can do this. Now put your leg down like this. Now push up with arms. It will hurt but you can do it. No one can really help you move so it is up to you. Now let’s go. 1, 2, 3 go.”

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