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Should I try Actemra (Tocilizumab)

Posted , 17 users are following.

koen1
koen1

My rheumy is suggesting that I should try Actemra. Situation: PMR and GCA diagnosis in September 2016. Started at 60mg after some eye problems. Got down to 30mg in 8 weeks, flare-up at attempt to go to 25mg. Back to 60mg now slower, got down to 17.5 in 9 months. New flare-up, back up to 20, then 30 and then 50mg to get symptoms back under control. Then in 7 months DSNS method down to 12.5.mg. Now I have another flare-up and my rheumy suggests that I should try Actemra. I live in the US and am on Medicare, but it is going to be very expensive for me due to the copay. I have seen good double blind test reports, that suggest it is more effective than just prednisone.

I have no problems with the Pred: no weight gain, no high sugar, sleep well etc.

What do you think? Should I go for the Actemra or make sure the next DSNS "run" gets me below 10mg and then go even slower? 

 

0 likes, 26 replies

26 Replies

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  • mary_ann42677
    mary_ann42677 koen1

    Posted

    My Reheum wants me to try Actemra also.  I’m nervous about the side effects, anyway you can get a grant from the  drug company for the copay.  I am also on Medicare and was told the copay could be as little as zero compared to $1,000.  My Reheum gave me the paper work to submit,  maybe you could inquire with the dr or mfg.  good luck,  
  • mary_ann42677
    mary_ann42677 koen1

    Posted

    My Reheum wants me to try Actemra also.  I’m nervous about the side effects, anyway you can get a grant from the  drug company for the copay.  I am also on Medicare and was told the copay could be as little as zero compared to $1,000.  My Reheum gave me the paper work to submit,  maybe you could inquire with the dr or mfg.  good luck,  
  • mary_ann42677
    mary_ann42677 koen1

    Posted

    Please advise what is the DSNS method to reduce Prednisone.  I never heard that term. Thanks
    • Anhaga
      Anhaga mary_ann42677

      Posted

      I've used the DSNS method as well.  It successfully got me to about 2 mg, although this seems to be a level I need to remain at for now, I think the PMR is still active although I've been on pred for nearly three years.  Thanks to DSNS I've been below 5 mg for two of those three years.

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