Acterma infusions for GCA

I’m not tapering off but have a question. I’ve been on Actrema infusions for 3 months for GCA. I’ve noticed symptoms returning after 3 weeks. I asked rheumatologist if normal and was told no. Have others had this experience?

Does GCA actually go away where you can quit the meds? I'm just curious. I don't have GCA, I have PMR so I'm evaluated for GCA every time I see my rheumatologist. I always thought GCA was much more serious than PMR.

I was on Actemra monthly infusions for 5 years. Had GCA (diagnosed positive via biopsies on both sides) and after 5 years of infusions blood work finally returned within normal limits. Went off infusions with no side effects. Recently was on Methotrexate as a caution post stroke. Side effects of Methotrexate were hair thinning and possibly loss of appetite. I am off both Actemera and Methotrexate for a year or so and feeling great. No cure for GCA therefore in remission and keeping my fingers crossed that it remains the same.

Are you still on steroids ?

@judycrocco Yes, 20 mg daily.

I just had to stop Actemra because it caused me to have diverticulitis. So painful

@gailcha I have RA and I have been on actemra for a few years. My rheumatologist told me it is meant to be used in combination with another drug, like arava, plaquenil, etc. and that it takes about 5 months for it to work fully. I started out taking it with arava and after about 5 months I could really tell a difference. I am prone to lung infections and after 3 years or so I developed a mass on my lung which the doctors think was caused by the arava. The mass turned out to be just necrotic tissue but then my rheumatologist was afraid to put me back on arava so he gave me actemra with methotrexate. Even after several months it has not been very effective.

@judycrocco I just saw your question and I am also using Actemra and Methotrexate for GCA. When my Rheumatologist told me he was putting me on Acremra to get me off of Prednisone I asked about Rinvoq and my Rheumatologist told me that Rinvoq has not yet been approved for the treatment of GCA and therefore the insurance companies don't want to or won't pay for it.

Your circumstance may be different or maybe you have a generous insurance company but I just wanted to shar with you what I found out when I asked about Rinvoq. Good luck.

@maddboat02 I’ve had cutaneous sarcoidosis for about a year. My doctor first prescribed Plaquenil, but unfortunately it didn’t work for me. It seemed to reduce the inflammation in my body, but it didn’t improve my skin lesions.

I’m now taking methotrexate injections and have had 4 doses so far, but I still haven’t seen any improvement. The only side effect I’ve experienced is hair loss.

Did you have any side effects from methotrexate?Did it eventually help you to get better?

@aysecologlu01
I took Methotrexate in pill form - never injections. As I wrote it was ordered as a cautionary measure as I was already in remission with GCA but I experienced 3 strokes - 1 in Nov and 2 in February. Not sure if strokes were related to GCA. So no, I didn’t see any improvement health wise. I did have hair thinning but it’s fine now that I am off Metho drug