1. < Polymyalgia Rheumatica (PMR)

Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

leerow60 | @leerow60 | Apr 1 7:36pm
In reply to @johnbishop "Hello @charann2000 There is currently another active discussion on giant cell arteritis here that you may..." + (show)
@johnbishop

Hello @charann2000

There is currently another active discussion on giant cell arteritis here that you may want to read through:
— https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/bookmark/?ajax_hook=action&_wpnonce=e2b2fbfe6e

I’m tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @charann2000 on giant cell arteritis?

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@charann2000 — do you have any questions about giant cell arteritis?

John

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I was diagnosed October 25, 2023. I kept going to my country Dr. they couldnt figure out what was wrong. I was weak, headaches joint and muscle aches, fever, scalp and jaw hurt,swelling. Then on Oct 25,2023 i woke up blind in left eye. So weak could barely get up. My husband ran me to eye Dr. after an hour of testing he called an opthmalogist friend . he said i think I know. ai was in to the surgeon for a biopsy in a matter of hours. Then i was srushed to another hospital and admitted for 10 days. they ran tons of blood test. ct, mri's of pretty much my whole body. Began prednizone immediately. by the end of the trip i had 4 surgeries and several auto ammune diseases. mine went to far. The steroids aren't working well. I keep having flareups badly. Im losing vision in the other eye. My aorta is involved. I am severely anemic. I have GCA, PMR, Scleroderma, RA and moly something. iron infusions several times a week. live with a port.said they are going to try one more drug. Actemra. I have tried several. aaaaaaaall my labs are out wack. i hate this disease, I am so depressed.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 1 8:19pm
In reply to @leerow60 "I was diagnosed October 25, 2023. I kept going to my country Dr. they couldnt figure..." + (show)
@leerow60

I was diagnosed October 25, 2023. I kept going to my country Dr. they couldnt figure out what was wrong. I was weak, headaches joint and muscle aches, fever, scalp and jaw hurt,swelling. Then on Oct 25,2023 i woke up blind in left eye. So weak could barely get up. My husband ran me to eye Dr. after an hour of testing he called an opthmalogist friend . he said i think I know. ai was in to the surgeon for a biopsy in a matter of hours. Then i was srushed to another hospital and admitted for 10 days. they ran tons of blood test. ct, mri's of pretty much my whole body. Began prednizone immediately. by the end of the trip i had 4 surgeries and several auto ammune diseases. mine went to far. The steroids aren't working well. I keep having flareups badly. Im losing vision in the other eye. My aorta is involved. I am severely anemic. I have GCA, PMR, Scleroderma, RA and moly something. iron infusions several times a week. live with a port.said they are going to try one more drug. Actemra. I have tried several. aaaaaaaall my labs are out wack. i hate this disease, I am so depressed.

Jump to this post

Hello @leerow60, Welcome to Connect. I can't begin to imagine how difficult your journey with GCA, PMR, Scleroderma, RA and more has been for you. I'm sorry to hear that the steroids aren't working for you. You mentioned they are going to try Actemra next. There is another discussion on the medication that you might find helpful where others have shared their experience:
--- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

Have you started on Actemra yet?

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