Need Help with Reducing Pred

[BrianJR]

Its been two years since I last wrote on this forum and quite frankly I never thought I had to as my journey with GCA and PMR has been fairly uneventful.

BUT now I need some advice. I started November 2019 on 40 mg of prednisone with Actemra to follow about two months later and felt such relief from my achey body and severe headaches. About 2 months ago I was able to go down to 2 mg of pred and still felt good (able to walk 3 miles and play tennis twice a week). But when I started the 1.5 mg things just feel apart. I could no longer play tennis, and I was exhausted after my walks. On my own, I went up to 3 mg. of pred but I still felt weak and sometimes bleary eyed. I thought maybe I was not producing enough cortisol so I had that checked and found out it was normal from my endocrinologist. I got a message from him to stay on 3 mg for another month than to decrease 1/2 a mg every other day???? I know that this would be impossible for me to do so I will be calling my rheumatologist to find out what she recommends but I thought I would first ask all you good people for your opinion before I speak to her. I have followed this group for over two years and am so impressed and inspired by your knowledge and fortitude.

[PMRpro Ambassador]

Go to the FAQs page and look at the sections on tapering.

Does he maybe mean take 3mg for the next month and then do a month taking 3mg and 2.5mg on alternate days? Which would make far more sense and you might manage that. I think Dad2Cue dropped from 3mg in one fell swoop at the behest of his endocrinologist and he was OK - but it isn't something I would like to try!

While your blood test may LOOK OK, the whole feedback system may still be rusty enough to not react smoothly when you ask it to do more than just cope with a plain old everyday day in the house. And anyway - 3mg is a pretty decent dose to manage low activity PMR/GCA - you still need to taper the dose in case that is still a factor. I'd suspect that was what stuck its head above the parapet when you reduced the dose. Actemra doesn't work 100% for all patients - it deals with one underlying cause of production of inflammation and about half of patients seem to have other things going on that respond to pred but not Actemra.

[BrianJR in reply to PMRpro]

I just reread his secretary’s message again and it said. Stay on 3 mg for a month and than decrease it a half every other day. A little confusing but Maybe your right. He probably means, like you said, stay on 3 mg for a month and than alternate from 3 to 2/12 every other day for a month. I’ll call him Monday to for clarification.

[PMRpro Ambassador in reply to BrianJR]

Certainly hope he does!!!

[DorsetLady PMRGCAuk volunteer]

I think she means what PMRpro has suggested….but not expressed herself very well.,

[BrianJR in reply to DorsetLady]

I’ll let you know if it’s anything else there suggesting. Thanks ladies.