My story/Initial weight loss?

Posted by laura71 @laura71, 1 day ago

Did you initially lose weight easily with PMR, even on Prednisone? I started hurting in Jan 1 2026 and started steroids May 1st. I lost 14 pounds (fairly easily) although I was trying as well. I started on 40 mg of prednisone because my doctor was worried about PMR. I found that when I went on vacation i gained 5.5 in a week (definitely more because of Prednisone--20 mg at the time). I feel myself getting a double chin when I sit down now. 🙁 I'm 54 years old, young for PMR. My doctor is not convinced that it's PMR because my blood numbers went down to normal within 5 days of taking the Prednisone...he said you should feel total body relief with the Prenisone, but numbers going down that fast should take weeks.
There are so many thoughts and questions I have, it's hard to put them all in a post. I'm now on 10 mg and going down to 7.5 in a week. What do people do to get rid of the double chin and extra weight? I am trying to drink more water and decrease salt, but I admit I could be doing a better job. I felt so much better when I had lost 14 pounds!

I had an EMG to test my muscle function during the diagnostic process, and I have "moderate nerve damage" which PMR does not cause. Just had a muscle and nerve biopsy this week. Also not fun. The MDs (Rheum and Neuro) seem to think 2 things are going on at one time. (PMR and something else autoimmune...causes unknown but something inflammatory). This year has been depressing.
Of note, my MD also said that I should completely pain free on the Prednisone if it is PMR, but I've pretty much always still had pain and stiffness, which resolves around 2pm, taking 1000 mg of extra strength Tylenol 2 or 3 times a day and the Prednisone in the morning. Thank you for reading if you have made it this far. If you can relate or have thoughts on any of this I would be glad to hear it! Glad to have this group and see some discussion around these issues. Thank you-L

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@laura71, I gained quite a bit of weight my first time around with PMR and it took awhile to take it off. The second time with PMR I was determined not to let it happen again and changed my eating habits and lifestyle some which made my second time with PMR much easier to taper off of the prednisone. Each of us are different and it does seem like gaining weight happens for most of us. You might find it helpful to scan through the other PMR discussions relating to weight loss - here's a search of the PMR support group using "weight loss" - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

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I was fairly young at 63 and lost about 20 pounds even with prednisone in November 2024. Docs also thought maybe something else since i did not respond well at first. Several scans and other tests all negative. Eventually I felt better and slowly tapered. Drug free since December 2025 and feel good. Best of luck.

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