Anyone have discomfort or pain when tapering off prednisone?

Posted by monami @monami, Apr 7, 2022

I am currently on a 3 dose of prednisone. I have some shoulder discomfort that goes down my back on either side. The left side is worse than the right. Anyone else experience back issues? It tends to go away by 3 or 4 pm. Thanks to all! We will get over this thing!

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@andirae

I have been tapering at a rate suggested by my doctor. I was just wondering, is prednisone to make the pain go away or just make it more manageable? As I have tapered down from the 10mg level I have found each time that I usually have some discomfort during the first week or so and then seem to level off. It is never totally gone since I notice some discomfort in the morning when I get up. It is not at all like the pain before being on prednisone. When my dr asks me about pain I am not sure she understands when I describe things.
I was down to 7.5 for a good 6 weeks and she wanted me to go to 6mg after my last visit. And then after 3 weeks go down to 5mg. I did get down to 6, but am wondering if it is my tipping point. I had a little flare for a couple days after about 2 weeks at 6. It improved but it has made me leary about going down to 5mg. I was supposed to have started that a week ago but haven't. I'm just not sure what to do since I don't want to do anything that would complicate things with my condition.
I have reached out to my dr via their portal but haven't gotten any direct answers to my questions. Only suggestions were to see my pcp or move my appointment up. I tried to move my appointment but there are no openings before my appointment at the end of the month.

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Maybe consider asking about getting on Methotrexate or one of the drugs such as Enbrel, Humira, etc. But consider the side effects of being on Prednisone for a long period vs taking the other drugs. My personal experience was that while I loved the feel of sufficient Prednisone, there are side effects that are not desirable like it affects your bones, etc. I tried replacing the Prednisone with Tylenol for Arthritis (800 mg per day) and that helped a lot, but I am managing things to my satisfaction with a combination of Methotrexate and Enbrel. You cannot drink alcohol with Methotrexate though.

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@art43

Seems a little fast, compared to my schedule, but….
Between 10 and 5, I was tapering at 1 per month. Now I am tapering at 0.5 per month. I do have some wrist and shoulder pain some mornings.
Unless testing shows differently, the pains you are having are probably not PMR. You may need to slow your taper to give your adrenals more time to ramp up cortisol production.
There are numerous earlier posts in this thread and elsewhere in the PMR group that you should be checking out.
Another person’s taper is not necessarily the right one for you, and pain is not necessarily PMR.

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Thanks

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@dorlera

I've been on prednisone for PMR for 3.5 months now. 20 mg to start, down to 10/12.5 every other day. My symptoms never went away completely. I'm dealing with finger pain/stiffness, wrists, and shoulders in the mornings into the afternoons. I feel badly complaining because it's bearable compared to full blown symptoms of PMR! However, I did not have these aches and pains pre-PMR. The rheumatologist started me on Methotrexate last week so we shall see if that helps after a while. Good luck on your journey and hang in there!

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How are you getting on with Methotrexate regarding side effects

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@juneannetteayres

How are you getting on with Methotrexate regarding side effects

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I've been on the methotrexate just over 2 weeks now (completed the 3rd week of dosing, slowly increasing up to the 7 pills ((total 17.5 mg)) that will be the dose I take once per week beginning this coming week). I've not experienced side effects thus far. Still have the soreness/pain in fingers/wrists and shoulders but I understand it will take a bit for the methotrexate to take effect. I have not totally given up alcohol but have cut back on frequency. Hopefully the liver will not be compromised. My labs so far have been good. I have not had any labs since adding the Methotrexate yet.

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I was on prednisone for almost two years starting at 15 Mg but quickly learned my magic number was 10mg. Unreal how pain would disappear in 2-4 days after it returned if I hit 5.mg. My inflammation markers also increased . I was given 20 mg of generic cymbalta a year ago to help relieve pressure pain in my legs. 6 months before that I was given gabapentin and had to stop it due to swelling in my ankles. After my 3 rd attempt and stopping prednisone and gaining 30lb my rheumatologist put me on kevzera in April. I continued to taper down and finally hit zero 3 weeks ago. 7 weeks ago I noticed my ankles and fingers were swollen and almost painful. I also have severe pain in my legs. It is different than my PMR pain 7 -8 months ago it was getting harder and harder for me to get up from the floor and climb steps. Again different than PMR pain. My thighs hurt so much after I would get up from sitting ; the pain would dissipate after standing for awhile . I could walk more than a mile on a flat service .
My doctor thought I have prednisone
Myalgia . Due to swollen ankles I stopped Cymbalta. Swelling is not a side effect from Kevzara but is from Cymbalta. As previous said my inflammationh markers have not gone up on Kevzera even though I am in terrible different pain I am giving Kevzera one more month. Maybe it is causing the pain I am havingg Don’t know what to do . I read what everyone writes and there is no major cure.
I want to be painfree!!! Hope time is the cure

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I would suggest you talk thru your delima with your PCP. I discovered that several of my pains that my rheumatologist lumped into PMR have other unrelated causes. Also being on Prednisone for 2 years can interfere with your adrenal glands functioning. you might eliminate! that as a source of some of the problems.
Do online research either before a visit or afterwards to arm yourself with facts.
Just guard against self diagnosis. Dr Google does not know you and the details of your history.

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Has anyone ever done a taper with one day on and one day off at a 2.5 mg. dose? He has tapered from 25 mg down to the 2.5 over a course of 9 months. My husband's doctor has told him to do this for a month. It seems like a drastic schedule to me. Honestly after reading so many stories of how long it took to taper I am really concerned. Thanks everyone.

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@maia2255

Has anyone ever done a taper with one day on and one day off at a 2.5 mg. dose? He has tapered from 25 mg down to the 2.5 over a course of 9 months. My husband's doctor has told him to do this for a month. It seems like a drastic schedule to me. Honestly after reading so many stories of how long it took to taper I am really concerned. Thanks everyone.

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There was some old research that alternate day dosing was helpful when a patient had adrenal insufficiency. Supposedly when your cortisol level drops low enough without a replacement dose of Prednisone that would be a clue for the adrenals to produce cortisol. I don't think those studies were ever validated.

I tried doing alternate day dosing when I thought PMR was in remission. It wasn't that drastic but I wouldn't recommend doing that if you are still having symptoms. My endocrinologist wasn't opposed to me trying alternate day dosing but not as a fixed schedule if I started to have symptoms on the day I didn't take my dose. My endocrinoloist warned me that it could be dangerous if my adrenals weren't able to produce enough cortisol.

Also, I was on a biologic that controlled PMR when I tried alternate day dosing.

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@dadcue

There was some old research that alternate day dosing was helpful when a patient had adrenal insufficiency. Supposedly when your cortisol level drops low enough without a replacement dose of Prednisone that would be a clue for the adrenals to produce cortisol. I don't think those studies were ever validated.

I tried doing alternate day dosing when I thought PMR was in remission. It wasn't that drastic but I wouldn't recommend doing that if you are still having symptoms. My endocrinologist wasn't opposed to me trying alternate day dosing but not as a fixed schedule if I started to have symptoms on the day I didn't take my dose. My endocrinoloist warned me that it could be dangerous if my adrenals weren't able to produce enough cortisol.

Also, I was on a biologic that controlled PMR when I tried alternate day dosing.

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Thank you, that makes so much sense.

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@jabrown0407

I would suggest you talk thru your delima with your PCP. I discovered that several of my pains that my rheumatologist lumped into PMR have other unrelated causes. Also being on Prednisone for 2 years can interfere with your adrenal glands functioning. you might eliminate! that as a source of some of the problems.
Do online research either before a visit or afterwards to arm yourself with facts.
Just guard against self diagnosis. Dr Google does not know you and the details of your history.

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If the pain is not going away, you might suggest an MRI because this may not be PMR but another complication such as osteoarthritis or a tear in a joint or tendonitis. Prednisone covers up the immediate cause by killing the pain. It is worth it to get a diagnostic test. I am glad I did. I thought I was still dealing with PMR but found out I have tendonitis and osteoarthritis. No more PMR.

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