← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Discussion
Comment receiving replies
@dadcue

I have an autoimmune inflammatory arthritis with uveitis diagnosed in my early 30's. I'm now 68 so it has been a difficult road. My rheumatologist added PMR on top of everything else when I was 52. She says I have a full range of rheumatology problems but generalizes everything as "systemic inflammation."

I took prednisone in my younger days. I needed large doses but only short term and I could get back into remission easily. Remission only lasted a year or so until I relapsed again and needed prednisone again.

PMR was something new and different for me when it was diagnosed. It was comparable to inflammatory arthritis so there was some confusion at first. Then again the two conditions are different.

Both inflammatory arthritis and PMR wouldn't exist in an ideal world. Unfortunately, the two conditions do coexist and symptoms overlap to a large extent. I can only sympathize with both you as and your father.

My rheumatologist didn't always distinguish one thing from another. Prednisone doesn't stop the inflammation caused by PMR from happening. Prendisone only manages PMR inflammation to a certain degree. My rheumatologist said PMR tended to get in way of other treatment options that are more available for other autoimmune conditions. Nothing works perfectly for everyone.

I was pleasantly surprised when Actemra worked so well. My rheumatologist is now saying "PMR" and "remission" in the same sentence. There has been a huge improvement in the way I now feel. My ophthalmologist would rather I be on a different biologic but Actemra was my choice.

Likewise, I haven't had any significant side effects from Actemra but that doesn't mean there aren't any. I'm being monitored closely and Actemra can be easily stopped for any reason. It is a huge advantage to be able to stop a medication when the situation warrants it to be stopped.

I have stopped Actemra a few times but not because of infections or side effects. My symptoms returned but only gradually. It wasn't like a major flare that people are prone to have.

I needed to stop Actemra for about 6 months during Covid because of supply chain problems. Actemra was being used to treat severely ill patients with covid. There was something reassuring about Actemra being used for that purpose. It was interesting how my body reacted to Actemra being stopped.

https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-drug-treatment-covid-19#:~:text=Actemra%20is%20a%20prescription%20medication,hospitalized%20patients%20with%20COVID%2D19.

Actemra isn't approved for PMR so it may be difficult to get it prescribed for your father. However, Kevzara is now approved for PMR so it might be more readily available. Both medications are similar and somewhat restricted to patients who don't respond well to corticosteroids. It sounds like your father may be one of those patients but I'm not a doctor. I refrain from giving any medical advice but I like sharing my experience with Actemra.

Sorry, I might get too excited about Actemra when I scroll up and see how long this is.

Jump to this post


Replies to "I have an autoimmune inflammatory arthritis with uveitis diagnosed in my early 30's. I'm now 68..."

@dadcue Thank you for sharing your experience, and I’m so sorry you’ve had to go through this too. This is really helpful information to hear. I didn’t even know there were potential alternatives to prednisone (off-label or not). He is on Medicare, so you’re right and it’s possible an alternative may be difficult to obtain or get coverage for. I’m no stranger to using biologics off-label. I take Humira and it’s constantly causing confusion because I have a different diagnosis that’s not super uncommon but apparently not well known (I have seronegative spondyloarthropathy, which is related to the more common ankylosing spondylitis, but it only affects every other joint except the spine >_< and does not cause elevated inflammatory markers, making it difficult to diagnose). Thanks again.