How did you cope with the side effects tapering off prednisone?

In April started 20 ml steroid. It was wonderful. Started tapering to 17.5 then 15. Pain came back and doctor said go back up to 20. Now 20 doesn't seem to have same effect as it did before. Profound weakness and unsteady in walking. Can't see doctor till August. About ready to give up.

I've tapered from 15mg (6 weeks) to 12.5mg (two weeks) daily and realized just yesterday that I'm feeling oddly normal suddenly. I'm not even noticing much in the way of Prednisone side effects.
I see the doctor this afternoon and will ask about going down to 10mg daily then get the 1mg tablets for a slower tapering.
He's also questioning the Tramadol (for Fibro pain) and since I get migraines, I'll see if I can try Topamax. If so, I may be able to taper off the Tramadol and no longer take the Imitrex for migraines. Very exciting!

Hello @marymckeith, It sounds like you may be tapering too fast. I started at 20 mg prednisone both times when my PMR was active. The first time it took me 3 and half years to taper off. My rheumatologist told me I need to listen to my body and only taper when the pain was under control. He had me keep a daily log with my level of pain when waking up and the amount of prednisone I took for the day. You might find the information in this reference helpful if you need to discuss the tapering with your doctor.

--- GCA & PMR - Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429.

Do you keep a daily log?

No but I will. Dr told me to go back up to 20 until August. I feel fine until I take the pill. When it kicks in I become profoundly weak. Could barely make it back to car after groceries. I don't think anyone believes how debilitating it is. Practically a zombie. Thanks for answering and I will try to go on the best that I can. Can't understand why 20 isn't working as before. Had two wonderful months.

I've been on Prednisone for almost 3 years and down to 7.5 ml at this point. My skin is so thin and fragile that any little bump or scratch turns into a bruise and cut. I work in the garden and even wear long sleeves but doesn't seem to help. Does anyone have some special cream they use to thicken skin. I look like I've been beaten up all the time. And when I finally get off this stuff, will the bruising stop.

Okay, I am embarrassed. But on the other hand this is perfect example of steroid side effects. I am constantly mixing up things. black vs. white. opposites. doing the opposite of what I intended to do. mixing up numbers. forgetful. feeling lost. confused. So my above comment was incorrect. I went from a 0 pain level to a 1-2 pain level. Not an 8-9!! Sorry about that. I read last night that steroids cause a form of 'dementia" .
I definitely feel like I'm experiencing it. Luckilly they say it mostly reverses itself once off the steroids. I am seeing a Neurologist this week though (aside from my Rheumatologist) because I am so worried.

In April started 20 ml steroid. It was wonderful. Started tapering to 17.5 then 15. Pain came back and doctor said go back up to 20. Now 20 doesn't seem to have same effect as it did before. Profound weakness and unsteady in walking. Can't see doctor till August. About ready to give up.

I had to split my dose between morning and night I take them as exact to 12 hours apart as possible. It has helped with the side effects a lot. Are you stretching? Easy stretches can help ease the pain quite a bit. And take Tylenol (or generic) if needed rather than Ibuprophen or other NSAIDS. Call your doctor and leave a message if you still feel lousy. Perhaps you can get on a wait list to see him sooner.

Gentle exercise and use hiking walking sticks to help with stability. Go on line as you can find exercises that will help with stability. I walk around my garden. It's not big but i can manage half an hour in it right now. i have found that my muscles are much weaker than before. Some of that could be old age, 78. . I am glad I was really strong before as I would be in a wheel chair right now. Don't give up, there is an end. After 4 years I am now getting better. I didn't know about the fussy diet you have to eat at the beginning and that delayed recovery as all my favourite foods are on that do not eat list. What has probably taken me so long is that I have actually probably been ill for 20 years but doctors didn't recognize it. Had to give up working in 2001 as I couldn't stand it any longer. Right now I am glad to say that pain and exhaustion is almost at zero. Now I have to find the courage to give up prednisone. Keep on looking forward. We wish you all the best.