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Acterma Infusions

Posted , 11 users are following.

darlene36688
darlene36688

Would like to hear from anyone who has or is getting the acterma infusion.

I am scheduled to begin this process in about a week.

The infusion office told me my immune system will be completely gone once I start. I know my system is very low now.

I really need help with this GCA.

I really hope this will help so my doctor can reduce my prednisone.  Seven month's ago I started on 60mg. of prednisone, then 40 mg, & now I'm stuck at 20mg. any lower & the headaches are bad. 

My doctor is very excited about it about the acterma.

Guess I have too much time on my hands & I keep reading about the side effects of this drug.

This is why I would like to hear from people who are using it now or have used it to see what side effects you might have had.

I'm going to get the infusion.

Guess I'm just a bit apprehensive about it. 

Thanks in advance.

0 likes, 9 replies

9 Replies

  • susan29426
    susan29426 darlene36688

    Posted

    I turned down Actemra the first time after reading about it. Scary, isn't it? Finally got more scared of Prednisone - was told it was weakening my heart muscle. Anyway, I've had 5 or 6 infusions. So far, so good. Have dropped Prednisone from 12 to 6 mg, inflammation is gone. I work with the public, have been around sick people, many with the awful flu - so far, so good. I drink 1000 mg C every morning, against Dr.'s orders. I hope you will also have a good experience. Stay in touch.

    • darlene36688
      darlene36688 susan29426

      Posted

      Thank you for your response.

      I do feel better about the infusion now. My anxiety level is so much better.

      Had a very bad headache because of the GCA yesterday and all thru the night.

      I really want to get the prednisone as low as possible. My doctor said it will depend on the (inflammation) labs.  He really wants to cut back on the prednisone but so far I can't seem to get under 20mg. because of the headaches. I still get an occasional headache with the 20mg.

      I'll post after I start the infusion.

       

  • charles92035
    charles92035 darlene36688

    Posted

    I have been on Actemra/Tocilizumab from June of 2017 until now. I give myself two injections per month and so far I have not had any problems. In general I feel better and believe the Actemra does help. I also started the Prednisone at 60mg and got stuck at 20mg and could not get any lower. I am now at 10mg and am ready to drop to 9.5mg. As far as the possibility of infections I stay away from crowds, use hand sanitizer, try to eat healthy, and drink a lot of green tea. Good luck with the Actemra.

    C

    • darlene36688
      darlene36688 charles92035

      Posted

      Thank you for your response.

      You did help me.

      I'm not so apprehensive now.

      Now I can relax better till they call me for the appointment to begin my infusion.

      I'll post when I have the infusion.

  • mjhollywood
    mjhollywood darlene36688

    Posted

    HI Darlene. I am 55 years old I take one shot a week and now I am down to 4 mil predsone   I work for  an airline.  Around hundreds people. Close contact. And go to the gym 4 to 5 days a week.   I have not gotten sick.!! I still hAve some stiffness always in the morning.  And again at night or anytime I sit for more the 30 min.  I been doing this now for two months . I have tried to go lower in the predsone but can’t.  But will keep trying.  Let us know.  How it goes   Mj
    • darlene36688
      darlene36688 mjhollywood

      Posted

      Thank you for your response.

      You did help me.

      I'm not nearly as apprehensive now.

      I'll post when I begin my infusion.

  • nick67069
    nick67069 darlene36688

    Posted

    your immune system is already compromised with prednisone. I have no experience with acterma  personally, but have read that is approved for GCA treatment. I "only" have PMR, so have to deal with pred smile/  Good luck to you.

    • darlene36688
      darlene36688 nick67069

      Posted

      Thank you for your good wishes.

      I've heard from some pretty wonderful people here and they have helped so much with my anxiety level.

      It is great to be able to talk with people who understand what  I/we are going thru.

      Best of luck with your PMR.

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