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Is actemra for GCA worth all the side effects ? Also PA vs MD?
I was diagnosed with GCA in early October 2023. I started at 60 mg prednisone, then 40, then 20. Today I start 10 mg for 10 days then 5 mg for a month. I am currently waiting for an appointment with a Rheumatologist at our university teaching hospital on January 11. In the meantime, my primary care doctor has been coordinating my care with a Rheumatologist PA down the hall from him. (I have an appointment with that PA on January 17. This PA is currently not associated with a rheumatologist. However, the hospital where he is associated is a partner with the Mayo Clinic.) I am interested in opinions on going to a PA who I believe is working alone vs an MD associated with a teaching hospital. Also, the side effects of Actemra seem worse than Prednisone. (My husband read them and said he wouldn’t use Actemra). They seem scarier ( cancer, MS, perforated bowel.). I don’t know how much study was done on the incidence of these side effects. Any thoughts from the group on these two questions.?
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I think your doctor is cutting you back way to fast, when you reach 10mg usually it goes down very slow and 1ml or 1/2ml at a time. Biologic’s do carry more risk.
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2 ReactionsThank you for your comment.
By the way, what happens if you cut back too fast? I am hoping that the Rheumatologist will review next week at my appointment. Thanks again
Increasing or decreasing your dose is very individualized. What is right for one person might be wrong for someone else. Hopefully your rheumatologist will review this with you next week at your appointment. Your rheumatologist should review how you feel and that largely decides what is right for you.
First and foremost, my rheumatologist wanted to help. We didn't always agree with what was helpful but we were a team. Communication was key to success. We had the same goal so we never opposed each other. That's my sports analogy anyway.
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1 ReactionThanks
Unfortunately in my experience over the last 1 1/2 years with PMR there are many different directions to take. I started with my primary who detected the symptoms. He started me on 40 of prednisone. The pain went away within 4 days which was a huge relief. Then the side effects of the prednisone kicked in. After about 6 months of working with him it was time to see a Rheumatologist. It's soo important to find one you respect and trust and then communicate with them.
My labs showed elevated IL-6 , sed rates and CRP. We need to know and understand these tests. He has tapered me down to 5 mg prednisone. SLOWLY. Thank God. I was miserable on prednisone. Plus I lost about 50 percent of my hair. At the same time to protect me from going blind with GCA he started me on Actemera. I haven't really had side effects except I've struggled a lot with incredible fatigue. Which may have been the prednisone. All this to say, we're doing the best we can with a lot of grey areas that take patience. The challenge for me is to continue to educate myself as best I can, work with my doctor. Try to stay positive, as much as I can do the things. I love. Don't overdo, trust God. Stay in touch with friends. Going to spend some time in the sun this winter. Remember you'll get 50 different opinions for each of your questions, don't stop asking but come back to those you trust the most. Hopefully a spouse , doctor, close friends.
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3 ReactionsThe fatigue is likely caused by the delay of the adrenal glands to start producing cortisol after long term prednisone use. This condition is called prednisone induced secondary adrenal insufficiency.
"Secondary adrenal insufficiency is most commonly caused by medications, such as prednisone, intra-articular injections with steroids, or steroid creams. In this situation, the adrenal glands may take days to months to recover function and restore proper cortisol production."
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-adrenal-insufficiency/#:~:text=Secondary%20adrenal%20insufficiency%20is%20most,and%20restore%20proper%20cortisol%20production.
The fatigue caused by adrenal insufficiency is INCREDIBLE!
Don't confuse adrenal insufficiency with adrenal fatigue.
https://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906#:~:text=Signs%20and%20symptoms%20of%20adrenal,Unexplained%20weight%20loss
Adrenal insufficiency may explain the hair loss too.
I had a fantastic response to Actemra after 12 years of prednisone use. My fatigue has infinitely improved but I am slower than I used to be. My hair is still thin but I'm older than I used to be too.
Factoring in the additional years -- I think I'm back to normal except for doing monthly IV Actemra infusions instead of daily oral prednisone.
I'm not sure how or when I will stop doing the monthly Actemra infusions. After four years of Actemra, it doesn't seem to cause me any problems.
I hope you will feel the benefits soon too. Hopefully Actemra
won't create any new problems for you.
I never did have my IL-6 level checked. Maybe my rheumatologist made an educated guess.
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2 Reactions@pag1949, you may also be interested in this related discussion:
- Actemra (Tocilizumab) to treat PMR?? https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
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2 ReactionsI agree about cutting back too rapidly. I experienced a flare with that.
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2 ReactionsYesterday I was so tired. Walking was difficult because my legs seemed wobbly and weak. (That was day 3 on 10 mg). Everything was a struggle. Today is a bit better even though I was awake all night. I have a call into my primary care doctor, although I am hesitant to make him feel like I am questioning his decision.
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