Help with GCA

Welcome @cargriff4, I think members here on Connect will agree with you that your journey with GCA is probably not a short one. Here are a few related discussions that you might find helpful:
-- Possible GCA: https://connect.mayoclinic.org/discussion/possible-gca-1/
-- GCA conserns: https://connect.mayoclinic.org/discussion/gca-conserns/
-- Questions About GCA and Diet: https://connect.mayoclinic.org/discussion/questions-about-gca-and-diet/

There are also quite a few discussions on GCA treatments that might be helpful. Here's a search link that lists the different treatment discussions - https://connect.mayoclinic.org/search/discussions/

Do you mind sharing what treatment you are currently on?

Started June 16, 60 mg prednisone...multiple tests,and biopsy a,week later, positive results! 3 days in hospital for 1000mg treatments...Saw a rheumatologist two weeks later. Now on 50 mg prednisone and weekly flosamax!
Am waiting for insurance to approve Rinvoq Rheumatologist ordered blood testing and ,as a,result, has approved this as additional medication!
Be well!
God bless!

Hi. I was diagnosed with GCA in March 2025. Your prednisone protocol is similar to what mine was. I found the prednisone very helpful for reducing inflammation, it further suppressed my already compromised immune system and I caught frequent colds. I now wear a mask whenever I go into a store.
I’m not familiar with Rinvoq. My rheumatologist prescribed Actemra. I have been getting weekly shots since April 2025. After a year my insurance no longer approved Actemra, so now I’m on Tyenne. My rheumatologist said I’m in remission. In September I’m going to have a procedure to have a balloon inserted in my major femoral artery which has a 6 inch blockage. My rheumatologist told me this would likely happen, despite the weekly shots. It’s a strange autoimmune disease! Treatable but not curable. This is a good platform.
All the best to you!

@cargriff4
I started 60 mg prednisone in March. Rheumy added methotrexate and Rinvoq. May he dropped methotrexate, added Actrema IV and lowered prednisone to 10 mg. June dropped Rinvoq. Headache and jaw pain returned so upped to 15 mg prednisone. Okay in morning but by afternoon pain back. I’m not sure if the goal is to be pain free or not. Frustrating ride.
Good luck!

@elizabeth22
Hi ! We’ve connected in the past couple of weeks & you were so helpful!
Having just received this GCA diagnosis about 2 months ago I am still trying to learn as much as I can. This site is great!
My question to you is about your femeral artery blockage. How did they find that? Were you having any symptoms?

Hi again! To answer your question I had multiple MRI’s, PET scans, and CAT scans to determine, first, what was going on with me (this was before I was diagnosed), and, second (once diagnosed), to see how much damage was done. I have been in a lot of pain, especially with my right leg and foot, so a CAT scan/MRI/PET scan (can’t recall since I had so many) showed the 6 inch complete blockage in my right femoral artery. That explains why I’m in such pain! So, what’s happening is that since my major artery is blocked, oxygen and blood are bypassing that artery and going through lesser arteries. It’s like the highway is closed, but the side streets are open! I’m doing PT to increase blood and oxygen flow through a Peripheral Artery Disease program, and it’s helping, but it’s not enough to get rid of the pain. I hope this helps. I’m glad you found this site so quickly after being diagnosed.
Wishing you all the best!

@elizabeth22
Thanks again for the information. I appreciate your clear explanations!
Best of luck with your upcoming procedure & best of health to you too!

Thank you! I’m so grateful I found this online support group!

@momac59 I has a biopsy which was positive!

If you are on Facebook, there is a,wonderful GCA group you can join with men parts from foreign countries! Posts are found,at all times around the clock!
Very informative!