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Is Actemra (tocilizumab) for GCA worth the side effects?
Polymyalgia Rheumatica (PMR) | Last Active: Dec 9 7:18pm | Replies (30)Comment receiving replies
@dadcue Due to my WBC continually getting lower and my respiratory infections, my rheumatologist just lowered my dosage. I was on 6 mg/kg. I just had my first lowered dose of 4 mg/kg. last Tuesday. My infusions are every 4 weeks. Before this, he talked about starting my 'taper' in Jan. 2027. Looks like I just started my taper. Hopefully, my WBC will improve, as well as my immunity.
I've never been completely pain-free. I took my last dose of Prednisone the first week of November, about the same time as my November infusion. The time between that infusion and my December infusion, my pain increased. Knees, hips, shoulders. After my infusion, it improved a bit. Are you pain-free?
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@ropnrose
I'm not 100% pain free. I have multiple conditions which all "contribute" a certain amount of pain to my overall pain. PMR contributed the major share of my pain but certainly didn't cause all my pain.
Actemra was targeting PMR and my rheumatologist doesn't think PMR is active anymore and is optimally treated. Actemra might stop working sometime in the future so PMR might return. PMR seems to return when I don't do my Actemra infusions at least every 6 weeks but every 4 weeks is better. I'm at the lowest dose (4 mg/kg) but my dose can be increased if necessary.
As for some of my other conditions -- Actemra is NOT "optimal" treatment but it helps. The rest of my pain is tolerable. I don't think being 100% pain free is possible anymore. My rheumatologist wants to address some of the other pain issues but I don't think I need anything else for pain relief.