Anyone have discomfort or pain when tapering off prednisone?

Hi @monami, welcome. @pacarolyn started a discussion about back and shoulder pain that may interest you.
- Persistent pain in top left side of back below the shoulder https://connect.mayoclinic.org/discussion/persistent-pain-in-top-left-side-of-back-below-the-shoulder/

You might also be interested in this related discussion about tapering off of prednisone.
- PMR Dosages and Managing Symptoms https://connect.mayoclinic.org/discussion/pmr-dosages/

Monami, can you explain what you mean by 3 dose of prednisone? Did you have similar pain related to PMR or did this pain only start as you started tapering?

Yes, back pain between shoulder blades and up to neck. In the process of trying to taper from 20 mg to 15 mg but had to go up by 1.25. Back pain still there. Extra strength tylenol helps, but it does return daily at this time. It's a slow process.

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.

Thank you so much, Colleen. PMR is such a hard to wrangle disease -- we do our best!

I am on Hydrocortisone-20 mg in the AM and 10 mg. in the PM which I think is equivalent to about 6-8 mg of Prednisone. I have a stiff neck, heaviness around my upper chest and around the upper arms. Of late, I get severe pain going down my left arm to the point of not being able to lift my arm or even hold something. My doctors do not know why this is happening. I am going to PT just because.
And then sometimes the pain just disappears. I am so tired of all this.

Sorry to hear this news tillsam - hope it gets sorted out. One of the lessons I learned is just because we have pain from PMR doesn't mean that we can't get pain from other systems of the body. I guess one of the concerns would be if the pain in your chest and upper arms might represent heart problems. Even the pain disappearing can go along with a type of heart disorder. A cardiologist could help sort this out. Keep us posted.

I'm sympathetic. I'm at 9 mg of prednisone and have had pain in my upper back, neck and shoulders. For several days it felt like someone was stabbing me with an ice pick under my shoulder blades. Then it suddenly went away. I get a feeling of muscle tightness in my whole chest making it uncomfortable to take a deep breath. Then today I feel pretty good after the prednisone kicked in. Very strange disease!

I am tapering and currently at 9mg. Doctor suggested two weeks for each step. But after a drop i feel terrible for the first week and then slowly come up for air. I asked if i could stretch it out to 4 weeks before dropping another 1 mg. And he agreed.

I've been tapering Prednisone by 2.5 mg every two weeks. It was going well - not much pain - until I tapered from 15 mg to 12.5. That was a week ago. A week later, I'm still experiencing pain in both shoulders and upper arms. It's very similar to the pain I experienced before being diagnosed with PMR. I've got a call into my rheumatologist to see if I might taper by one mg every 2 weeks instead of 2.5. Fingers crossed that will help with the pain. I think tapering too quickly by too much could bring on a relapse in the disease. Thanks everyone for this discussion. You are all so supportive and informative. It really helps - I learn a lot and don't feel quite so alone with this condition.

If you're in pain, you shouldn't be tapering. The objective is not a relentless drive to zero prednisone though we'd all like to be off the stuff. The objective is to find the lowest dose where you get the same relief you initially got when you started prednisone. Your body dictates the taper, not an artificial schedule. We try to reduce slowly , but if the pain increases you've gone too low. Inflammation will just continue to accumulate and you'll have a flare. 12.5 may be too low for you right now. If you go back to where you last felt good, you can stabilize and then try again with a slower reduction.