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Actemra, just had my first IV of Actemra ,

Posted , 10 users are following.

jeanne58484
jeanne58484

Interested in how long it takes to work and side effects. Thank you

0 likes, 10 replies

10 Replies

  • EileenH
    EileenH jeanne58484

    Posted

    Asking about side effects on the RA forum might get more answers - infusions are used more often in RA and have been for several years so there will be more experience there.

    I'm not sure how many people on this forum have been offered Actemra.

  • catherine34621
    catherine34621 jeanne58484

    Posted

    Hi, I am just about to start this drug, I am waiting for a Nurse to show me how to administer the pen device for injecting myself, (a bit jittery to be honest) I am also taking 5mgs. of Pred. alongside it. The book I have been given shows almost the same side effects of Pred. i.e. weight gain, b/p increase, cold symptoms, etc. Having said all this, I hope we are talking about the same drug,, (Tocilizumab)?

    • Misha452
      Misha452 catherine34621

      Posted

      I have been taking Actemra using the pen injector for 17 weeks. I taught myself using the instructions in the package, it is a small needle so it doesn't hurt. I have GCA & PMR and my symptoms started improving the first week and have continued to improve. I haven't gotten any infections or gained weight but my cholesterol has increased slightly

    • janet06653
      janet06653 catherine34621

      Posted

      See my comment below, I have been on Acterma for 33 weeks via self administered Actpen. It took my body about 6 weeks to adjust to the drug. No weight gain or cold symptoms but did have mild diarrhea for a day or two after taking the drug, each week for the first 6 weeks. After that I have had no side effects however I always

      try to stay well rested and to keep my exercise at a moderate level instead of a strenuous one. In addition I bought a pile of N95 Alpha Mask ( face masks) to protect my self when in airports, on planes, in crowds, etc. ( esp during flu season).

      Feel free to contact me if you have any problems administering the ACTpen, it took me a while to figure out how to do it easily. ( even after the Nurse instruction).

      ( I get a 3 months supply and need to keep it in the refrig. I let a dose warm up to room temp. for 30 minutes before I administer it and jerk the cap off hard and apply the pen to the top of my thigh, it releases the Acterma through the needle quickly).

  • jo66120
    jo66120 jeanne58484

    Posted

    Hello, my doctor was thinking about putting me on this drug because I have RA. She did a blood test to test me for my cholestrol levels. I had to fast for a day and then they did the test. My levels were high ( slightly above normal) and she decided to not use it, I think it had to do with the heart, not sure. Might want to talk with the doctor it. Also there is some good information about Actemria on the RA forum. Best to you.

    • EileenH
      EileenH jo66120

      Posted

      One of the adverse effects of Actemra is to raise cholesterol - so if you have a high level to start with they may decide against it.

  • jeanne58484
    jeanne58484

    Posted

    Thank you all for the information on ACTEMRA, it was helpful. Any more info will be greatly appreciated.

  • janet06653
    janet06653 jeanne58484

    Posted

    Hi,

    I have been on Acterma weekly (Actpen) for 33 weeks for GCA and PMR.

    My Dr has advised that there is no set protocol the length of time I will be on it, as it can vary depending on each patients condition. I have just tapered off pred. I have not had a GCA flair in

    15 months. The Dr will evaluate my condition again in about 3 months to determine how long to stay on Actema and at what dose. Basically the Dr has advised me that I will be on Acterma for 2 -3 years.

    Janet

    • catherine34621
      catherine34621 janet06653

      Posted

      The Tocilizumab is only okayed for 1yr. so we'll see what happens then I understand.

  • jeanne58484
    jeanne58484

    Posted

    i had my first treatment of ACTEMRA IV 10 days ago. My treatment is IV Actrema once a month for 5 more months with 5 mg of prednisone , each month dropping 1mg .

    I was diagnosised with GCA in September, was on high doses of steriods and tapered off slowly to 5mg. I am hopeful this will work, still in pain in the evening and morning but I am fine during the day. Any advice from anyone in a similiar situation. Thank you

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