Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Thank you. I am really in need of support. I hate being a complainer to my family. I think they are scared and in denial since what I am now is so not me. Your response does help and is welcomed.

So glad to talk. It really helps me in that no one knows anything about this weird disease . So happy to have this communication.

I never heard of temporal arteritis either when I was diagnosed. However it’s not some weird mysterious disease doctors don’t know about. My doc quickly diagnosed it and confirmed with a biopsy; my rheumatologist treats giant cell arteritis on a regular basis. Trust your doctors.

Yes, I have to trust my rheumatologist at this point since my new primary care doctor dropped the ball. Considering how serious this condition can be, misdiagnosis or waiting too long to treat it properly could have resulted in blindness. I am glad that I advocated for myself since I didn't trust or have a relationship with my new doctor..

It s always good to be your own advocate .
My ophthalmologist and rheumatologist said it is still considered to
be rare. I believe this , because most of my friends and family like me ,had never been aware of It.

Agree totally. Crazy and weird diagnosis. My brother who has a Masters in Biology, has worked in hospitals and now teaches had to Google it.

In the day and age we presently live in, it is recommended to always advocate for yourself, especially when you know something is not right. A lot of primary care doctors are guilty of hanging on to the patients, putzing around and not admitting they are going nowhere fast, especially if you have good health insurance, (Medicare is considered to be the Gold Card for most of them). Don't get me wrong when I say this, but it is the absolute truth...always watch out for yourself, especially when you are older and hopefully wiser when it comes to your own health or that of loved ones. If a doctor is threatened or intimidated by this, I drop them faster than a hot potato and never look back! Good luck to you....you are on the right path way to getting better now!

Thank you! I appreciate your input and affirmation. I am so happy to have found this forum. I have been feeling so isolated with no one understanding my trials.

I too appreciate everyone's sharing of experiences. Diagnosed with GCA and Polymyalgia July 2018 and down to 5mg tomorrow, from 60mg. Yippee!! Only pain that has returned (at 7 mg) is the jaw, which is odd, because that had gone away immediately. Nothing compared to what the overall pain was. Hope to eventually get off totally, at some point, but I'm comfortable with what I'm doing. I just recently read a book on GCA written by an English woman, not a doctor. I think it was good I read it now and not earlier.

I would like to read a book about GCA. Can you give me the title and author's name? Thanks for your input...5 mg! so happy for you!