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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
I had monthly Actemra infusions for 1 year, tapering to every other month for 1 year and now I'm getting infusion every 3 months. My blood is tested every 3 months. I failed to mention that I've also been treated with physical therapy for my hips and shoulders. I have found that my daily movements are much better when I do the prescribed stretches with resistance bands each day. I live in NW Wisconsin so the cold months are the most difficult.
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That is interesting how the time between infusions is being stretched out. I started Actemra injections on January 1st, 2019. I was able to get off prednisone for good after about one year. I had one failed attempt to taper off while doing injections every two weeks. When injections were weekly, I was successful.
I have not been able to stop Actemra since it was first tried but a neurosurgeon wanted me off Actemra for 1 month before surgery and 1 month after surgery. I was switched to Actemra infusions just to see if I could go 2 months between infusions. I went 6 weeks without any problems. I thought the infusions were great because I was getting tired of doing weekly injections.
My back surgery was postponed so I'm back doing weekly injections mostly because I have a supply of injections that will expire if not used. My rheumatologist doesn't want me to go more than 2 weeks between injections.