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

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?

These are great suggestions and I will try them. I just discovered that stretching my legs seems to help. I am certainly going to try 10 ml 12 hours apart as the 20 ml seems to really wipe me out. You have helped me! Thanks so much. Also will try Tylenol.

I agree... My dad's rheumatologist said we need to "listen to his body," and not what dose we wish he could be at with the prednisone. It's not worth it to speed the taper if it impacts quality of life.

He's been at 6.25 mg the last two weeks, and he doesn't have symptoms but ESR is slightly elevated. She suggested to drop down to 6 mg, but we're really reluctant because he's only just gotten over a flare. She then said she's more than okay with staying at the current dose for another 2 more weeks so we can feel more certain his pain is stable.

Also agree with @vellen and others who've mentioned walking and gentle stretching. With an inflammatory (unlike "wear and tear" or osteoarthritis), the pain usually gets worse with prolonged rest. My dad had a severe stroke, so we have to help him with his exercises, but we always have to start the day with gentle range of motion exercises and help keep him moving as is possible throughout the day, or the stiffness gets worse.

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?

On 4 th day of 8 mg from 10 mg and getting night time symptoms,tonight back to 9 mg try again next week. I think too big of drop from 10 to 8.

Not sure this is correct place to respond. Diagnosed 5/23. Started on 30mg of prednisone and am now on 10 mg of prednisone. My tapering regime at present is to decrease by 1mg per month. So far my tapering has not produced any adverse effects. My main concern now is all the supplements and other meds I have to take because of prednisone. Doctor has prescribed fozamax because my recent dexa scan result is in the danger range for osteoporosis. I am taking 1000 calcium + 2000 vit D3 + vit K + Pepcid (to mitigate possible stomach bleeding from prednisone +occuvite for eye health. My little Sunday-Saturday daily pill container is bursting! Went to my monthly rheumatologist appointment last week and she thinks everything looks great. I don’t want to be pessimistic, but from what I read on this blog, the next phase of tapering could be very challenging. Here’s hoping it won’t be. Liz Ward

Yes, that is a big drop. I’ve been trying to go from 5 1/2 to 5 for months. So hard to be patient but your body will let you know when it’s time to drop just a half or whole mg.

On 4 th day of 8 mg from 10 mg and getting night time symptoms,tonight back to 9 mg try again next week. I think too big of drop from 10 to 8.