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GCA conserns

Polymyalgia Rheumatica (PMR) | Last Active: 6 days ago | Replies (36)

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@redboat

I had a mild headache, with pressure behind my eyes, from the time my (extraordinarily severe) PMR symptoms started in Jan 2023. Initially this was the last of my worries given my extremely painful 24/7 PMR symptoms. I was diagnosed with PMR 3 weeks after the symptoms started. After 4 weeks of treatment with Prednisone at 20 mg, the headache became worse, my eyes muscles started to feel quite sore, and I then developed short episodes of double vision. At that point, I was pretty panicked, and added another 20 mg of Prednisone to what I had already taken that day, and went to the ER. After a 12-hour nightmare medieval experience in the ER, during which they imaged my head, I was told there were no signs of GCA, and I had not had a stroke. The additional Prednisone I had taken had made the headache, double vision, and eye soreness all disappear. The ER doctors prescribed 60 mg/day of Prednisone. This was now March 2023. The 60 mg/day Prednisone was very effective, but had serious side effects - especially in terms of insomnia. A month later, in April 2023, I began Actemra (tocilizumab) injections and tapering off the Prednisone. After 6 more months, in October 2023, I finally got off Prednisone. I've now been off Prednisone for 5 weeks, and continue weekly injection of Actemra. So far, no relapses, and minimal side effects from the Actemra. I'm 64 years old, male, have always been very physically active, 5'10.5", 140 lbs. DEFINITELY, DEFINITELY get educated and be prepared to advocate for yourself. The doctors work for you!

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Replies to "I had a mild headache, with pressure behind my eyes, from the time my (extraordinarily severe)..."

Thank-you for the update. I was wondering what was happening.

I know it is probably too soon to talk about discontinuing Actemra. I have been on Actemra for almost 4 years. Actemra was stopped once because of a lack of supply during a prolonged period of time when there was a problem with the supply chain. I didn't do well when Actemra was stopped. I wouldn't call it a relapse but I did go back on 10 mg of prednisone for a couple of months.

Now there doesn't seem to be any plan to stop Actemra. First my doctor would say we would discuss it at my next visit. Nothing happened at the next visit so I asked again at my recent visit. The answer was, "I could do an infusion every 5 weeks if I wanted to but I didn't need to." That wasn't exactly the answer I wanted to hear.

I'm currently doing an Actemra infusion every 4 weeks and all is well. I got off prednisone again in a couple of weeks when Actemra was restarted.

Hello @redboat I was also wondering how you were ! What an informative story -- so NO GCA - but you were/are Prednsione -non responder for PMR ? did you retire ?