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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: Mar 14 2:01pm | Replies (58)Comment receiving replies
@julieahp
My experience has been very similar to yours. I was diagnosed with GCA and PMR in late June 2024. At the time of my diagnosis I had about 6 events where the vision in my left eye smeared out. Some colors would disappear, and other colors would smear out and take their place. I had a lot of other symptoms too, jaw claudication, night sweats, fever, etc, plus all of the joint issues from PMR. I was hospitalized for 3 days where I was given an infusion each day of 1000 mg of methylprednisolone. Then I was on 60 mg of prednisone per day for 6 weeks. I started taking weekly Actemra injections in mid August 2024. Once I started Actemra I started tapering the prednisone.
My treatment has worked very well. I haven't had any flares or symptoms since I was diagnosed. I was able to taper off of prednisone in August 2025. I only had some mild symptoms of prednisone withdrawal as I tapered and after I stopped.
I was 70 when I was diagnosed. I had retired a couple of years before that. I'm really glad I wasn't working while I was sick and being treated. I have been running for almost 50 years, and I was able to keep running a little and/or walking most days since I got sick. I also lift weights and stretch every other day, and have been able to keep doing that. It doesn't seem like I've lost any strength compared to the time before I got sick.
I saw my rheumatologist recently, and for the first time he laid out a plan for me to get off Actemra, assuming everything keeps going ok. He wants me to keep taking weekly injections for another 5 months. At that point I will have been on Actemra for almost 2 years. Then he wants me to taper the Actemra to injections every other week for year, which will mark 3 years of treatment for me. I don't know how likely it will be that things work out that way. I'll just have to wait and see.
For you, at some point you could taper the Tyenne by taking a smaller amount in the infusions.
I think they test out CRP and ESR routinely just to make sure the Actemra/Tyenne is working as expected. I think they test our liver function routinely also to make sure nothing is going wrong.
I know that relapses are possible, but you can't know until you try. Taking one of the biologic drugs for an extended period of time (greater than a year) is the best strategy that is available to us.
Replies to "@julieahp My experience has been very similar to yours. I was diagnosed with GCA and PMR..."
Hi again from Julie. Did you sustain any permanent eye damage from your GCA vision loss episodes? I hope not. I had swirling vision in both my eyes (I think it was both) where I couldn't see because everything was out of focus for several minutes. It was like a blizzard where I couldn't see objects out the windshield (luckily my husband was driving me to urgent care already). Two episodes of this a week apart. But the opthalmologist verified that no permanent damage was done & now optometrist monitors. I also had several weeks of jaw claudication & months of night sweats & joint involvement, esp. shoulders & hips.
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@jeff97
Thanks, Jeff. Yes, looks like we have a similar diagnosis & treatment trajectory.
I was diagnosed at 63 and have to work FT until at least 67.
My liver functions (ALT, AST) were incredibly high (254!, idiopathic, tests came back negative for this & that) when I began taking Tyenne, which was worrisome to me (if you read the Tyenne dosing instructions). (I think it may have been due to the antibiotic they gave me after the temporal artery biopsy that was in a class of drugs known to "assault" the liver.) Over many months, & even on Tyenne, my liver fcn tests finally returned to mid-range normal. They also monitor the kidney (creatinine), of course, & that's all been normal so far. On 7/31/24, my CRP was 132, (< 7 normal), ouch. But after a couple of months of treatment went right down to < 1 and now < 3.
Glad you keep up your lifelong good exercise. Healthy! [Although my neighbor who has another autoimmune disease (ankylosing spondylitis) actually exercised so strenuously that she contracted an "overdoing exercise condition" awful immune response. Everyone is different. (AI: Exercise triggers complex immune responses, with moderate activity boosting immune surveillance & fighting infection, while strenuous or prolonged exercise can temporarily suppress immune function, increasing illness risk through stress hormones like cortisol. Both types mobilize immune cells (like neutrophils, NK cells, T cells) & release cytokines (like IL-6), but intense exertion can lead to a temporary "open window" of vulnerability, though regular activity enhances long-term immunity & vaccine response.)
I can easily fast-walk 5-6 miles, hilly terrain, but lack all-important daily consistency with work & life's other time-hogging demands.
I/we have really enjoyed our anti-inflammatory diet & there are so many great cookbooks & other resources out there. Love all the fresh veggies, beans, fruits, etc. For now, content to remain on current Tyenne regimen & monitor my body for relapse symptoms; but don't know if it's normal to have some of the upper back pain & minor leg muscle weakness OR if it is a sign of relapse.
Just aging or flare-up?! The jaw pain or eye involvement would be an urgent medical contact! Thank you for collaborating.