Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

No, I don't, but I'll start.
I totally agree about tampering.
Thank you for suggestions.

Hi Cynthia, I too am newly diagnosed (May 8). Rheumatologist started me on 20 mg of prednisone which, after a few days, I reported that it wasn’t really a game change (some relief but not complete). She upped dosage to 30mg for a week then tapered to 25 for 5 days and now I am on 20mg. I have not experienced any joint pain during this time. However, I have an Dr. appointment next week and I think Dr. will want to continue the taper. Needless to say I am nervous about this but understand the need to reduce/get off of prednisone with minimum issues. I will report back my continuing saga. FYI, so far no side effects on prednisone but I have been on a pretty strict Mediterranean diet with no salt or sugar. I do have a dexa scan next week as well. I am hoping my bone density is not in the osteoporosis range. Good luck and keep communicating with your Dr. Liz Ward

Interesting to read this. I’ve been started on 15 mg a bit over two weeks ago. The first week the pain was gone, I’m finding now that I’ve got a lot of pain breaking through again. It’s very discouraging, however I read through these posts and realize I’m not alone nor am I as some others and for that am grateful. I touch base with my specialist next week, I can see an increase in prednisone coming up. I’m not wanting to increase dose as so far I don’t have any of the side effects of prednisone, except insomnia! Who wants to sleep anyway?? 🤣🤣

I’m on 15 mg pred for PMR. I have to get a wisdom tooth extracted. Any insight as to complications? I’ve read that once on prednisone the healing is much longer and the likelihood of infection is greater. Thoughts? Thanks!

I thought I would share this reference while you wait for others with experience with tooth extractions while on prednisone.

Prednisone and Dental Procedures: https://understandingmyositis.org/prednisone-dental-procedures/

Have you talked to your dentist about being on prednisone and what to expect?

I'm fairly new to this group but have seen a lot of good info. I'm down to 10 mg/ day of prednisone from 20 mg. Diagnosed in Nov. 2022. Have tried going to 7.5 mg but pain came back with a vengeance. Has anyone had success with CBD, THC, or combination of both? I am type 1 diabetic and prednisone is really screwing up my blood glucose.

Hi @lanieg, I'm sorry to hear that the prednisone is messing with your blood glucose. That is definitely the pits. It's just my own opinion but I don't think CBD or THC will do anything to treat the cause of PMR to get you to remission but it may mask the pain. Hopefully other members may have some experience to share with you. There are a couple of other discussions that might be helpful when you are struggling to taper off of prednisone or need alternatives.

--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

A question for others with PMR. I often wake up with no or little amounts of fatigue and body aches and am able to do numerous things around the house. By the afternoon, however, sometime after finishing, I feel like I've been run over by a car. I'm just miserable with fatigue, aches, etc. Are others experiencing the same pattern? Thank you.

@richardab, When my PMR was active I did have a lot of fatigue, aches and pain late in the afternoon. This mostly occurred for me when I overdid my activities that day but I did notice less frequently if I hadn't done too much exercise.

Yes!! If I’m active and busy by 3 or 4 I’m in pain! Mornings now are better in that I can get out of bed and move around with little to no pain, it’s very discouraging.