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Treatment

Starting ACTEMRA

  • By Angela Lundberg

    Hello all!

    So I’m starting a new biologic this month–the first time in a long time. I’ve been on Remicade continuously for the last eight years. My doctor and I think the Remicade isn’t as effective as it once was so we’re going to try Actemra. I’m nervous about it, but I hope that it will work even better than Remicade for me. I’ll be getting the monthly IV infusion.

    Is anybody else on this? Thoughts?

    Thanks!
    Angela

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  • By Aimee S Girard

    Hello Angela,

    I recently started ACTEMRA in December. I have to take Benadryl and Tylenol an hour before I go for my infusion. It has been 7 weeks since my first infusion. I honestly feel no different than before my infusions. The doctor told me I should notice a difference after month two. I go again in two weeks and they will double my dose. The first month, I felt ok after but 2 weeks ago at my 2nd infusion, I felt nausea, achy flu like symptoms for 3 days after. Those are supposed to be normal side effects. Also. make sure you sign up for the copay assistance program. It brings my out of pocket portion down from ~700 to 84 each time. Good luck to you and reply how you’re doing.
    Aimee

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  • By Mariah Z. Leach Moderator

    Hi Angela ~

    I don’t have any personal experience with Actemra but I am about to switch from Enbrel to Orencia so I certainly understand your nervous feelings! Just wanted to wish you luck!! ~;o)

    ~Mariah~

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  • By Carla Kienast

    Hi Angela: You’re probably an old pro at Actemra by this time. I hope it’s working for you. I’m doing Actemra via injection (rather than infusion) and had my first injection a few days ago. Fingers crossed that it works (as I’m running out of options).

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  • By Anonymous

    I am on Actemra and have my 8th treatment on the 27 of Jul. it did not do anything for me until after the 6th infusion. The doc said normally it takes 4 or 5, I guess I was a late bloomer. It was really great to feel like I had no RA at all, but now I am starting to regress to where I was. Hoping this next one will do some good. I have had Enbrel, Orencia, Simponii and Xeljanz and they all ran out of effectiveness after about a year. Best of luck in your treatment.

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  • By Carla Kienast

    Hi Angela: Well, been on Actemra for a few months now (injections). The doctor doubled my initial dose from an injection every other week to every week. I get some relief. It kinds of feels like taking a 5mg or 10mg dose of prednisone. I take the injection on Sunday mornings and the improvement seems to last until about Tuesday noon. Not sure what’s next for me. Since I am getting some benefit, she may move me to the infusion and/or add something to supplement it.

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