Connect
Is Actemra (tocilizumab) for GCA worth the side effects?
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.?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
Don't worry about offending your doctor by pointing out your side effects. Write down when they occur and how bad they are so the doctor knows your account is accurate. A good doctor will want to get to the bottom of what is causing them and work out if they're serious and need immediate action or if they are likely to pass fairly quickly.
-
Like -
Helpful -
Hug
1 ReactionThank you
-
Like -
Helpful -
Hug
1 ReactionHas anyone taken Actemra for GCA? What are side effects you’ve had trouble with? I’ve been on prednisone but would like to off of it however I’m nervous about side effects.
@gertrudedallas, I moved your question about Actemra (tocilizumab) to this related discussion where @pag1949 got responses to similar questions:
- Is Actemra (tocilizumab) for GCA worth the side effects? https://connect.mayoclinic.org/discussion/is-actemra-for-gca-worth-all-the-side-effects-also-pa-vs-md/
You might also be interested in this related discussion:
- What's your experience with Actemra (tocilizumab) for GCA? https://connect.mayoclinic.org/discussion/gca-1/
i am on actemra infusions once a month for 9 months now. i have not had any side effects. i still need prednisone at times also but because im on actemra i use much less prednisone. my rheumatologist feels actemera is safer than long term prednisone
@gertrudedallas
I started Actemra on January 1st, 2019 --- 7 year anniversary in one month!
I'm still doing a monthly Actemra infusion with no serious side effects.
Actemra gave me my life back compared to my 12 years on prednisone with many side effects. I'm still recovering from long term prednisone use.
Are you more nervous about long term prednisone side effects or the potential side effects from Actemra?
If prednisone isn't causing you any problems ... maybe stick with prednisone. Actemra is costly and prednisone is cheap.
If you are having problems with prednisone ... I think Actemra is worth trying regardless of how much it costs. No guarantees that Actemra won't cause problems especially if you still need prednisone. I have been off prednisone for 5 years and I'm definitely better off prednisone and on Actemra.
-
Like -
Helpful -
Hug
3 ReactionsThank you! That helps me when making my decision. Are you on Actemra due to GCA? I’m sure praying mine goes into remission. The prednisone is making my cateracs grow & I don’t know if they can be removed while on prednisone. I guess I have some questions for my Dr.
@gertrudedallas
Actemra was started primarily for PMR but I have multiple autoimmune conditions. People may not realize that other autoimmune conditions can also cause vision loss.
I had an aggressive type of autoimmune uveitis that was diagnosed when I was in my 30's. It was routine for me to need 60-100 mg of prednisone for more than 30 separate flares of uveitis. However, remission of uveitis was relatively easy to achieve. I could always taper off Prednisone again when the flares of uveitis were being treated.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
------------------------
I think Prednisone caused me to have premature cataract formation before the age of 40. I was devastated to need cataract surgery when I was so young.
I have the same lens implants that were placed more than 30 years ago. I can say Prednisone didn't do any harm to my lens implants. Uveitis was more of a concern to my ophthalmologist and he assured me my cataracts were fixable.
-------------------------
After PMR was diagnosed at the age of 52, I needed a lot of Prednisone for a long time (12 years) in doses approaching GCA doses. I'm currently 71 years old. The problem was I could not taper off Prednisone for 12 years until Actemra was tried. For me Actemra worked for PMR but it has also has kept my other autoimmune conditions in remission, People say Prednisone is a miracle. For me ... getting off Prednisone was a miracle.