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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 I was diagnosed with GCA in July 2025, a few months after I had spine surgery. During my rehab for my surgery I experienced headaches and slight jaw pain. Following that I experienced blurred vision in my right eye. I immediately saw my eve doctor who ran tests and surmized that I had GCA. I was hospitalized for one week where they placed me on 60mg. of predisone and then 2 days of IV steroids. Other tests were run and upon discharge I was placed on lowering doses of prednisone. In September, I started IV infusions of actemra once a month until January of this year.I then started Tyenne injectables once a week. Since starting actemra/tyenne,I have had 3 UTI's.Thank God for my primary dr. because my Rheumatologist doesn't seem to have time to address this issue. Has anyone else been experiencing UTI's while on Actemra/Tyenne?
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@vmaynard
Hello. Much empathy for what you've gone through, all of it. I messaged you about UTI prevention, hoping it does help prevent. As you probably know, Actemra/Tyenne renders us immuncompromised, so unable to fight off many infections, particularly respiratory infections. But UTIs are difficult to fight off. Preventing bacteria from going where (or building up) it should not go is more important than ever. Routinely drink lots and lots of plain water (keep your system flushed and not concentrated) and void frequently, even before you feel the urge. UTIs not treated soon enough can lead to sepsis, as you surely know. Some can be "silent" but I'm guessing that most are terribly painful/uncomfortable. I hope you stop getting them and can stay off of antiobiotics.