GCA without temporal involvement

did you have a biopsy? I did not study up to much on GCA but I think some of testing can be suspect. Mayo clinic ordered a biopsy on me without asking if there was another alternative. At least your treatment plan sounds like the correct treatment for GCA.

Hello @tigre24, I think it sounds like large vessel GCA.

"Inflammation of extra-cranial vessels, with or without temporal involvement, is usually referred to as 'large-vessel GCA' [6], [7]. Rarely, GCA may be restricted to the limb arteries, without typical temporal artery and aorta involvement [6]."
-- Giant cell arteritis restricted to the limb arteries: An overlooked clinical entity
https://www.sciencedirect.com/science/article/abs/pii/S1568997214003024

I was diagnosed with Polymalagia rheumatica PMR and Giant Cell arteritis GCR
My blood was ok it indicated elevated inflammation and infection markers she started me on weaning off of prednisolone I am down to 15mg from 30mg. She is prepping me for immunesuppressant Actemra
I would appreciate any input

Welcome @kkmpk123, There are quite a few discussions on Actemra that you might find helpful. Here's a list of the discussions and comments by other members - https://connect.mayoclinic.org/search/discussions/?search=actemra%20for%20pmr.

It good to hear you have tapered down to 15 mg prednisolone. How long ago were you diagnosed?

I was on Actemra for my GCA. But, PMR predisposes GCA. I wasn’t getting the relief I needed for my PMR so my Doctor switched me to Kevzara injections along with 10 my pd if prednisone. Kevzara is specifically formulated for PMR.

Thanks …. It just seems like there is no sure prescription for these diseases! All trial and error because none of us fit the book pattern!

your right. everyone is different. PMR seems to bring out any other diseases that the immune system might have been suppressing as well. Making it even more complicated. Even small things like an arthritic shoulder or joint. The only thing you can say for sure is if you have PMR or GCA corticosteroids seem to work on everyone. Unfortunately thats not necessarily a good thing.

Kevzara injections are specific to PMR and approved for PMR. Prednisone is the go to for your GCA issue. Mine relapsed a month ago and my specialist hit me with 60 milligrams for three days. Then she titrated down.

When I received the Covid 19 vaccine 3 years ago I had a crippling relapse of my PMR. I’m in a wheelchair and not able to walk more than 20’ or stand more than 5 minutes. Lots of uncontrollable pain for six weeks. I’m on my 4th Primary Doctor who I hope will help me. If you experienced these symptoms also, please share your experience and treatment. Additionally, for a fact, the CDC had removed the J&J vaccine for these reactions for a month. They put it back on the market because not enough of us with PMR were relapsing. This year your auto immune specialist is supposed to tell you not to take the COVID vaccine. There are currently over 2000 of us crippled from this tragedy.

I was diagnosed with PMR & GCA in May 2022 at Mayo Clinic. My then rheumatologist put me on 40 mg prednisone & I started Actemra infusion every 4 weeks. I was weaned off prednisone completely by late September 2022. After more than 2 years on Actemra I am finally weaning off the infusions & will start spreading to 6 weeks. Hopefully I can keep my sed & crt rates normal. I have never had any kind of noticeable side effects from the Actemra. I’m really happy to be getting off Actemra though, it’s very expensive until you meet your deductible, but glad to not have that medication pumped into my body.