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Actemra Adventure Part 1

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Actemra, what is it? Actemra is a rheumatoid disease specific drug that can be injected or in my case infused. Actemra is the only drug of its type as it is an IL-6 inhibitor, which means it works differently than TNF-inhibitors like Humira, Orencia, Enbrel, and Remicade. I had my first IV of Actemra 3 weeks ago and have good news and bad news. Bad news first, during the IV my blood pressure dropped to 84/62 and I almost passed out, I also was nauseous for the next few days and felt as if I were back on Methotrexate [which made me nauseous always]. Additionally my hair started to thin [specifically on the right side] and is visibly different, hair loss is not a common side effect of Actemra so I’m attempting to pin down what happened there. Good news, I FEEL LIKE A PERSON! After months of feeling gross and immobile I can move around more easily, even with my boot. I am treating the hair thinning with Lush Cosmetics hair products. I am willing to have a few days of feeling like hell in order to function on this level normally. Hopefully I will continue to operate at this level for some time, I remain hopeful that the Actemra will do its job.

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2 responses »

  1. I am so glad that you’re getting some positive results from Actemra and I am hopeful that the side effects will go away after a bit. Sometimes they show up right at the first then become less bothersome over time. I am also on Actemra. I started with one injection every two weeks, then went to every week. Then we moved to an infusion and have finally doubled the infusion amount and added injected methotrexate. I’ve felt better than I have in over a year. Hope you’re continuing to heal well after your surgery and that the good news on Actemra continues.

    Reply
    • It is so great to hear that you’ve had so much success with Actemra! We skipped right over the injections and to the 4 mg IV so I’m hoping it continues to do a fair bit of good. I’m so glad you are feeling better!

      Reply

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