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After remission ... has anyone discontinued Actemra or Kevzara?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (28)Comment receiving replies
Once diagnosed with GCA primary, I was put on 50 mg of prednisone. I was not able to get below 15 mg side effects. I started the actemra. After the second dose, the doctor tried lowering me to 12 1/2 mg but the headaches were constant. I went back to 15 mg and after my second infusion tried 14 mg. I’ve still had breakthrough headaches but discussed with my doctor using Tylenol rather than increasing the prednisone again. I will see my rheumatologist again on Friday and further discuss trying to lower the prednisone to 13 mg. I want to try to get off or lower to a much smaller dose. The prednisone since the side effects are not pleasant. I just had my third infusion, keeping my fingers crossed.
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Apologize if this recent story is a tad lengthy but you might glean some useful bit from it.
Jacob
PFIZER COVID-19 Vaccine and Rheumatoid Arthritis Onset (2021 through 2025)
Any evidence so far linking COVID-19 Vaccine and Rheumatoid Arthritis (RA) ? In March/2021 I started the PFIZER COVID-19 vaccine followed by boosters in June/2021, December/2021, June/2022 and November/2022. No unusual side effects, but in May/2022 I developed increasingly acute inflammatory pain in shoulders, neck and hips. Various visits to Emerg with shoulder and neck ultrasound and CT scans through the end of 2022 were inconclusive.
In May/2023, I was formally diagnosed with Rheumatoid Arthritis (RA) and began different immunosuppressive medication plans, starting with Predisone and Alendronate, then Leflunomide, then Methotrextate (MTX) , then Actemra with no Leflunomide. Actemra was eventually successful in managing the inflammatory pain but with nasty side-effects, especially wooziness and balance issues.
In September/2024, the medication plan discontinued Actemra, leaving only Folic Acid and weekly MTX injections. Minor Inflammatory pain returned but was manageable with extra strength Tylenol and after 4 months, the wooziness and balance issues essentially disappeared. My rheumatologist expects to reduce the MTX dosage by 50% starting in September/2025 and MTX discontinuance at some future point.