PMR return

[GMA74]

I developed PMR in Sept of 2023. Started prednisone, 20 and at first had difficulty tapering until rheumy put me on Kevzara . Tapered slowly and took last dose end of Jan. Rheumy wanted me to continue with Kevzara .. Bureaucracy of getting approved for patient assistance along with the office personnel not following thru has left me off Kevzara for two months . CRP elevated and symptoms returned. Rheumy put me back on 15 and still trying to get approved for Kevzara .

I gained 10 lbs over the two years ( already overweight ). Had moon face , thinned hair etc. I am 76 and in the process of a major move .which has been stressful. .

Any advice ?

[DorsetLady PMRGCAuk volunteer]

Guess you mean September 2023, in your first post you say diagnosis January 2023, but symptoms started September 2022.

Would say since finishing both Pred and Kevzara , that PMR has resurfaced, (it never went away) as it lasts a lot longer than many doctors seem to know/admit. And the timescale is typical of allowing the inflammation to build up again, certainly not helped by the house move

Many find in that situation a smaller dose of Pred gets your PMR back under control.

Only suggestion is a slower reduction of Pred this time around -and drastically cut carbs to help weight.

[darkred in reply to DorsetLady]

I've been taking Kevzara as a steroid sparer. My rheumy has now suggested I reduce from 10 mg Pred this month. Now on 9 mg and hoping for the best. I do appreciate all the contributors to this site. The comments are invaluable. Of course, we owe much to your knowledge and lived experience (and the others who are "pro.")

[PMRpro Ambassador in reply to darkred]

If you mean me - I'm only a pro at PMR. Like DL, I am a volunteer patient too.

[darkred in reply to PMRpro]

I'm sorry if my post about "pro" caused confusion. In my book, you are a pro at PMR. I didn't mean to imply you are a medical professional, although this site has more knowledge, I believe, than what most medical professionals can give.

[PMRpro Ambassador in reply to darkred]

I do have a medical background, worked in the NHS originally.

[darkred in reply to PMRpro]

Yes. I read about your background just now. Thanks!

[singingloud]

I’ve been on prednisone for over 5 1/2 years. I was started on 80 mg which was way too much. I’m down to 7.5 mg and going to start the slow progress to 7 this month. I was offered Methotrexate but refused it because of the side effects.

You must be patient with the process because you don’t want to keep going up and down. I’ve not heard of the other medication and live in the USA.

I finally have my face back and I’m down 20lbs but have much to go.

Hang in there and many of the side effects will settle down hopefully for you as you slowly decrease.