Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

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

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.

@jhinia - Right now the important thing is to get to 20 mg. You should be able to sleep once you get there at least that is what happened to me. The one recommendation I read early on was to never go down more than 10% at a time after 20. Maybe I should have gone to 18 and it would have worked. I was so upset about the problems at 20 mg to 17.5 that I was scared to do anything else but the 1 mg. It worked and I eventually got off without any problems. Always remember slow is good.

@jhinia

Quick question. When you were tapering and went from 20 mg to 17.5 with issues, were you getting Actemra injections? My husband was down to 20 mg and last week his doctor wanted to go to 15. We pushed back and got her to agree to 17.5. He’s done this for a day and so far so good. She claims the Actemra helps reduce Prednisone more quickly. Fingers crossed.

i've been on Actemra since late Jan/24. down to 6mg prednisone back to 10 currently at 7 and symptoms returning. don't know if Actemra is working or not. everyone seems to have the same issues.....

i've been on Actemra since late Jan/24. down to 6mg prednisone back to 10 currently at 7 and symptoms returning. don't know if Actemra is working or not. everyone seems to have the same issues.....

@klmint

You said everyone seems to have the same issue. Do you mean that when you get to a certain dose giant cell arteritis symptoms return? Or PMR? I'm really hoping that's not going to be the case with my husband. That must be so annoying and disappointing after taking all the shots and drugs. Hang in there! Hopefully you'll be able to continue to taper until you're finally done with it.

It might be an adrenal problem rather than a problem with Actemra. I successfully tapered off Prednisone after Actemra was started. I had adrenal insufficiency that caused some of my problems with tapering off prednisone. Warning -- it is a long story so stop here if you aren't interested.

My experience was similar to your experience. I tapered my prednisone dose by 1 mg per month from 10 mg to 7 mg. I had no idea if Actemra was working or not. All I knew was I didn't have a flare at 7 mg of prednisone which was unusual because that is where my symptoms would always return. I wasn't symptom free but I didn't have a flare such that I had to go back to 10 mg.

I was discouraged so my thought was I would get the "inevitable flare" over with. I tapered by 1 mg per week for the next 4 weeks. My pain symptoms didn't get worse but I felt miserable because of overwhelming fatigue. I can't exactly describe how I felt because I was in uncharted waters on 3 mg of prednisone. I wasn't sure what to do except for being told by an endocrinologist that I should come back to see her if I ever reached 3 mg of prednisone.

I described my symptoms to my rheumatologist and he checked my a.m. cortisol level. My cortisol level was low so I was told in no uncertain terms that I shouldn't taper any lower than 3 mg. My rheumatologist referred me to an endocrinologist except the next opening was several months away.

In total, I was on 3 mg of prednisone for about 6 months until I was seen by an endocrinologist. We discussed my long term (12 years) of prednisone use for PMR. My endocrinologist was encouraged that I still had a cortisol level after 12 years on prednisone. We had a long discussion about stopping prednisone. My endocrinolgist said she didn't know what would happen if prednisone was stopped. She thought prednisone could be safely stopped because my cortisol level was "adequate." If I stopped prednisone , she stipulated that I could go back on prednisone again for any reason "if I felt the need." She also said 3 mg was such a low dose that tapering wasn't needed but I could if I wished.

I elected to try to get off Prednisone so I did a fast taper to zero. Things didn't go well the first time I tried to taper off prednisone. I will spare you all the details but I soon had a need for 60 mg of prednisone again. The problem wasn't PMR or GCA but something else entirely. I was devastated and I didn't think I would ever get off prednisone.

What followed was a year of "adjustments" to my treatment plan. Actemra was stopped for a few months while and a different biologic called Humira was tried. Humira didn't work well when PMR pain returned and I was stuck on 15 mg of prednisone again.

My rheumatologist gave me the choice of trying Acterma again or staying on Humira or prednisone. There was no way I wanted to stay on prednisone for the rest of my life. I tried Actemra a second time and tapered off prednisone again. The second time, I went from 15 mg to zero in 3 months.

I currently do monthly Actemra infusions instead of the injections. I have been off prednisone for the past 3 years with no symptoms of PMR/GCA. My quality of life has improved since getting off prednisone. My life isn't completely pain free but all my prednisone side effects are improving or have resolved.

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