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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 14 7:18am | Replies (72)Comment receiving replies
Hi Julie,
Welcome to this forum and I'm glad you are off Prednisone so soon.
You are one of the few who is getting Tyenne since it is so new. There are more people here on Actemra and most seem to have a positive experience. I won't go so far as to say everyone has a good experience.
I have been on Actemra for 7 years. I started out with injections and switched to monthly infusions of Actemra about 5 years ago. I had a couple side effects early on but nothing serious.
I wonder about CRP and ESR not being reliable. Then again, I'm not sure ESR and CRP were ever that reliable because some people with PMR/GCA have normal inflammation markers. My inflammation markers increased when I went more than 6 weeks between Actemra infusion. At least when the time between my infusions was stretched my rheumatologist relied on my inflammation markers. My symptoms got worse so my inflammation markers correlated with my symptoms. Since my inflammation markers increased, my rheumatologist has no plan to stop Actemra anytime soon.
I was on Prednisone for 12 years before Actemra was tried. For me, my personal experience with Actemra has been infinitely better than my 12 years on Prednisone. I haven't had any full blown relapses on Actemra like I did whenever I tried to taper off Prednisone. I haven't needed any prednisone for about 5 years. Actemra has spared me a boat load of prednisone.
I'm glad you joined this forum. I'm interested in your personal experiences with Tyenne. My rheumatologist says Tyenne might be another option for me if Actemra stops working. The body can form antibodies against biologics that render them less effective. Perhaps that is why inflammation markers are still checked.
https://altusbiologics.com/what-it-means-to-develop-antibodies-to-biologics/
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@dadcue
Hi Mike,
Thanks for your reply. Being a "worry wart" [NOT good for anyone!], I'm glad to hear from someone who has a longer experience with this autoimmune disorder (not sure if you have GCA or PMR or both). Timing in life...often out of our control...glad that Actemra arrived to spare you from more (12 yrs!) of Prednisone. I have read about relapses when stopping Prednisone. But also glad that Prednisone initially saves us from worse, sudden scenarios that GCA presents. How wonderful that these biologics allow us to taper off Prednisone. I was lucky to receive that news at the start of my diagnosis. During my diagnosis expedition, I "saw my life flash before my eyes," & became so worried before they landed on a diagnosis which was much less scary than some other ones they were able to rule out. Still, I pray for longevity--2 severely disabled sons (of 3) depend on me & my hubby. Chronic stress triggers & takes its toll. For now, I'm at the stage where my Rheumatologist recommends Tyenne for the rest of my life, but, as nobody knows what may arise, talks about the possibility of tweaking the dosing...not yet though. Originally, I was under the impression that it would be 2 years, remission & then off Tyenne, but now, that is not what I'm told. Thank you for the link on antibodies forming against biologics--will keep it for future reference. I cannot feel any side effects from Tyenne--nothing bad at all. No change, really. (Unlike Prednisone which made me feel great in every way, but look strange, moon face, heftier upper body, arms on a very small frame). Again, thanks for sharing your experience & wisdom.