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wendy517 avatar

Who has GCA, Giant Cell Arteritis?

Autoimmune Diseases | Last Active: 1 hour ago | Replies (14)

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I have been struggling with Temporal Arteritis (GCA) for 14 months now. I had a biopsy done 1 week after I had seen my PCP for severe temporal pain. She started me on high doses of Prednisone. Referred me to a surgeon and a Rheumatologist. By the time the biopsy was done the result was negative. The surgeon warned me that we could get a false negative because I had been on the high dose of prednisone for 6 days and by the time we did the biopsy the pain/inflammation had gone away. I have had 3 relapses in 14 months. We tried Actemra along with prednisone . After 4 weeks on that I ended up with diverticulitis so we had to stop that medication. Then we tried Methotrexate along with prednisone. The side affects with that were not good. I had no energy, more stomach aches than normal and I would fall asleep in the afternoon. Very uncommon for me as I usually have a lot of energy. We had to stop that one. once stopped, all my energy came back, thank the good lord. I just had my 3rd relapse. We are now trying Rinvoq along with the prednisone. The hope for me is that we can get down to a low dose of prednisone while taking the Rinvoq. My biggest fear is loosing my eye sight so I will keep trying whatever I can in order to save my eye sight. If your biopsy is positive for GCA or if it comes out as a false negative, you might want to see about working with a Rheumatologist. My Rheumatologist has been great. He has been working really hard with me to try to find some other medication other than a steroid to get this under control and hopefully in remission. I wish you good luck with your biopsy. I do hope you get some answers from it. Please feel free to reach out and share your information. You are the first person I have seen comment on GCA on this site so I felt I needed to send you a response. This is the first time I have ever sent a response. It is nice to know we are not alone in this challenge. Please let me know what you find out. Sending prayers your way.

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Replies to "I have been struggling with Temporal Arteritis (GCA) for 14 months now. I had a biopsy..."

@eaod good morning! I have been trying to find out abt GCA as well after symptoms aand 2 months of pred , hospitalization, etc. Like you, biopsy not accurate due to delay (3 weeks) and rheumatology appt 6 months out.
I am followed at a teaching hospital 2 hours away and my prayers were answered last week! My immunology Fellow also is a Rheumatology Fellow! She will see me next Monday. We are so grateful.
She will discuss med changes as well. I'm aware that these powerful drugs are difficult to tolerate. Our patience in trying them is required, tho certainly not an easy thing.
Plz continue to post updates, I will pray for you daily. God bless us in our journey.