Anyone have discomfort or pain when tapering off prednisone?

To begin with, I am not an expert. Just another PMR sufferer. But I would like to share what I have learned since I began this ride in Sept. 2021. When you are on large doses of prednisone for an extended period of time, your adrenal glands completely shut down. Because when you are on prednisone they decide you don't need them anymore. I strongly suggest you research adrenal glands and prednisone's affect on them. Anyway, when you get down to around 5 mg of prednisone, your adrenal glands go "hmmmm" , maybe our human wants some cortisol, and they MIGHT begin to come back into service. But usually it takes several months for them to come back into service, so you have to go really, really slow tapering in order to give them time to get them back up and running. If you don't, you can go into adrenal insufficiency. You might want to research that a bit as well. Anyway, I've given you the least amount of information, because I don't have all of it myself. But I do recommend you go by small increments tapering at this point, and don't taper unless you are not having any pain. You don't want to have a flare, which will set you back more than the slow tapering. Good luck!

Wow. This is great! I’m also on Methylpredisolone. I was at 16 last month now at 14 and next week Rheumatologist will tell me the next increment . How long did it take you to go from 16 to 4?

I started on methylprednisolone in May, 2021 - it is now 11 months and I am down to 4!!

I have been on Prednisone since 10/20. I started out at 80 mg and am now down to 5 mg in the AM and 5 mg in the PM. For a very long time I have complained about my arms, shoulders and neck feeling heavy. My rheumatologist doesn’t know why. Of late, my left arm gets very painful( checked out by my cardiologist-not cardiac related) and sometimes my neck hurts. My rheumatologist wants me to get radiographs. He thinks I can have a pinched nerve. I feel it has something to do with steroids. Actually, quite baffled by this. Has anyone else experienced anything like this?

I agree. Our bodies dictate tapering…PMR has taught me a lot about trusting my inner voice, and having the confidence to listen to wise people and still be my own advocate.

Hi @tiilysam, before being diagnosed with GCA and starting prednisone, 40 mg. in May 2021, I had neck with head pain so stiff and sore I could not turn my head. That disappeared immediately when I started prednisone. I also had shoulder pain. The left shoulder pain resolved, but I still have pain in the right shoulder and restricted movement because of osteoarthritis and rotator cuff tears. I've been going to physical therapy for that. I was just prescribed a TENS Unit and find that very helpful for the pain; also, an infrared heating pad helps ease it. I'm down to 4 mg prednisone now. Based on what I've read, if your pain is from PMR and GCA, the proper dosage of prednisone will eliminate it completely or make it manageable. If not, it could be due to another condition.

I wrote to my rheumatologist about taking a water pill. She totally ignored the question but told me to taper down from 7.5 mg to 5mg on alternating days. I still have considerable pain, especially in my back and hips. When I was on 10 mg my back pain was gone. Now it hurts all the time. She told me to take 1 500mg Tylenol once a day. I take 2 Tylenol arthritis pills at least once a day and they don't touch my pain. I know I need to get off prednisone but it seems like I will be in for even more pain on her new schedule. I have dry eye syndrome which I use an eye ointment for nightly. I feel like I hurt from my eyeballs to my knees! I can't stand or walk for any length of time. How do people deal with the pain and depression that comes with it?

They keep taking the prednisone. PMR is real . So is the PMR induced from prednisone. Life does get better if you can get your body to restart cortisol. PMR is a perfect fit for steroids. Its the only drug that works. Just the prednisone increases blood sugar, increases cholesterol, raises BP, causes eye issues, causes or contributes to gastro issues, gain weight, causes moon face and fatty neck, and you never feel like the same old you without it. Good luck.

Thank you! I have already gained the weight!

Has anybody used dexamethason? I have stopped prednisone and doctor switched me to 2 mg once a day. I feel better but interested in any comments or info. Think I can taper off this in couple weeks. Thanks