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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Profile picture for Elizabeth R @elizabethannr

MIne just upped me from 8 mg back to 9 mg to see if the pain will reduce. I am so disappoointed. But I start out my day first thing with a strong cup of coffee and an extra strength Tylenol right away and it really helps smooth things over.

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Try taking your Tylenol or prednisone a few hours before you get up in the morning. When you awake you’ll be pain free. Worked for me. I’ve been off Pred for two months. I take only Celebrex with a stomach protector at 5 am.

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Thank you. Lately since this PMR began, I naturally wake up at 4 AM, isn't that fun? so I have my coffee maker timed to go off at that time and when it chimes to let me know the French Roast is ready, I have my big mug full along with an extra strength Tylenol. I readthat the caffeine is a good boost for the Tyleniol. It sure is for me. Re: the prenisone, right now I am on 5 mg AM and 4 mg in the evening. The Dr. thinks I should take it all in one fell swoop in the AM as he is under the impression that it might keep me awake at night. But I hit the pillow and am gone for 5 hours, which is about all the sleep I get anymore. I make it up with a nap after lunch which I love.

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I had PMR quite a few years ago, and whatever dose of prednisone I was on, the nurse practitioner told me to periodically lower my dose. If I felt fine, wait a while, then lower the dose again. If I felt pain, increase the dose. Repeat this procedure until you were off it (hopefully). She said it could take 3 years. I had PMR for 3 years, therefore I was on prednisone for 3 years to the day.

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Profile picture for jeff97 @jeff97

I have cranial GCA and PMR. I take weekly Actemra injections, and I just finished prednisone after almost 14 months of treatment. I haven't had any pain or other symptoms since I started treatment. Have you considered Actemra?

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I am on actemera, one shot a week,
Just finished a year of prednisone.
I’m having a lot of pain , shoulders especially, nearly impossible to sleep…also neck, upper arms, back and thighs.
It’s really wearing me down. Pain is one thing, no sleep is another and much more debilitating. I can barely function, force myself to get necessary chores done. I am SO tired.

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Profile picture for chis55 @chis55

I am on actemera, one shot a week,
Just finished a year of prednisone.
I’m having a lot of pain , shoulders especially, nearly impossible to sleep…also neck, upper arms, back and thighs.
It’s really wearing me down. Pain is one thing, no sleep is another and much more debilitating. I can barely function, force myself to get necessary chores done. I am SO tired.

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I'm sorry you're having so much pain. I've read that Actemra doesn't work for everyone because it only affects one source of inflammation, IL-6, and some people have other sources that are more dominant. You could check with your doctor about trying Rinvoq, which is another drug that is approved to treat GCA in the US. It sounds like you need to be back on prednisone to relieve your pain. If you switch to Rinvoq, that can take several weeks or months to take full effect.

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Profile picture for monami @monami

I am currently on 3 mg of prednisone a day. I started out on 20 mg in Oct. of 2020 so it's been a journey. I was finally on 2.5 in February of this year. Back pain startet then. But when I went down to every other day (began March 4) I started feeling pretty bad. I didn't last 2 weeks and went back to 2.5 everyday. I saw my rheumatologist on April 6 (last week) and he said I need a slower taper so I am on 3 mg a day for 3 month and he plans on me lessening my dosage 1 mg at a time. I am otherwise in pretty good health and was gobsmacked by PMR like so many of us. What a strange disease this is! Thank you all for all your input.

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Try going down in 1/2 mg even a 1/4 of 1 mg , it will come back, but for me, the pain was for a shorter time and I could tolerate it. Once the pain leaves ,Continue for another 3-5 days and do it again. This is the point you need to trick your body into thinking it doesn't need any more prednisone. I also believe the coming off the prednisone is part of the problem ,not only the PMR

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I believe the taper is the most important. For me a 1 mg taper was too much and I need tapering in 1/2 to 1/4 of mg. For me that taper had the pain still come back a bit, but for not as long. Then I could tolerate the pain for a shorter time. Once you see that happen you know you are on your way to getting off the predinsone. You are correct your body dictates , but you need to make it less noticeable to your body so it thinks nothing has changed. I also believe , just coming off the prednisone could be part of the whole process and not just the PMR symptoms. I have been off all Prednisone for many years now. I remember the last time I took Prednisone it was 1/4 of a mg and I told my body this is the last you are getting. and it was. I ended up having a mild ache in my shoulder for a few weeks ,but through exercise and weight training it left and never has come back. I exercise all the way through PMR.
When exercising you need to exercise enough to activate the hormones that make you feel good. Cycling was my mode of choice. At least 1/2 hour. We are all different, but this worked for me.

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Profile picture for chis55 @chis55

I am on actemera, one shot a week,
Just finished a year of prednisone.
I’m having a lot of pain , shoulders especially, nearly impossible to sleep…also neck, upper arms, back and thighs.
It’s really wearing me down. Pain is one thing, no sleep is another and much more debilitating. I can barely function, force myself to get necessary chores done. I am SO tired.

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Sounds like you are having a PMR flare and Actemera is not working for you PMR. Might want to think about going back on Prednisone.

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Thank you…I have been considering that, thought I would have my labs first so not affected by prednisone. Tried Monday, 5 tries failed. It’s another trial in my journey. The heart institute labs ALWAYS succeeded on first try…now they are closed so it’s a crapshoot to find a competent phlebotomist.
I’ll try again Monday, but this one is a training lab, that’s not happening …it’s hard not to get discouraged.
I am 88+ and difficult to arrange transportation at appropriate times, etc. not to mention dry runs.

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Profile picture for chis55 @chis55

Thank you…I have been considering that, thought I would have my labs first so not affected by prednisone. Tried Monday, 5 tries failed. It’s another trial in my journey. The heart institute labs ALWAYS succeeded on first try…now they are closed so it’s a crapshoot to find a competent phlebotomist.
I’ll try again Monday, but this one is a training lab, that’s not happening …it’s hard not to get discouraged.
I am 88+ and difficult to arrange transportation at appropriate times, etc. not to mention dry runs.

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OTC might help til you see Dr.
Tylenol for Arthritis, per my rheumatologist

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