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Actemra (Tocilizumab) - fantastic results in the first month

Posted , 18 users are following.

FlipDover_Aust
FlipDover_Aust

I started self-injecting Actemra 4 weeks ago. My PMR was still very active despite 10mg of pred and 20mg MTX.

My CRP was sitting at 20 and not budging (yes, I know it's not awful, but it's not wonderful either lol).

Three weeks after starting the Actemra injections, my CRP is ONE!!

Yep - ONE!!! It hasn't been below 16 since diagnosis!

And I'm feeling well!!! I've even managed to get through my daughter's drama filled wedding and not fall in a big heap!

To say I'm impressed would be an understatement!

For more information you can try Googling "tocilizumab" and "remission" to get some quite readable articles on the early trials of using Actemra to treat PMR.

 

1 like, 74 replies

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  • Lizfor
    Lizfor FlipDover_Aust

    Posted

    That is just fantastic news! Monoclonal antibodies are wonderful things. I had Rituximab for a blood complaint and it put me into remission for 12 years and I had it again three years ago and I am hoping for another 12 years. This seems to be the way medicine is going and is so less destructive than other treatments. I wish you well for many, many years.
  • mimi1950
    mimi1950 FlipDover_Aust

    Posted

    Wow, your experience sounds promising. Im going g to try and get on a clinical trial if one exsists in Spain...PMR is not as prevelant in tbe South of Europe.

    Hope your spectacular improvement sustains , thank you for sharing.

    • EileenH
      EileenH mimi1950

      Posted

      The Phase 3 trial is finished apart from the long term follow-up to get some idea of how long the remission lasts so I'm fairly sure there are no trials recruiting at present. They were only for biopsy-proven GCA anyway. There have been a couple of tiny pilot studies in the USA with PMR patients - I assume driven by the company so getting funding is likely to be very difficult for PMR elsewhere. 

  • MrsO-UK_Surrey
    MrsO-UK_Surrey FlipDover_Aust

    Posted

    What wonderful news, FlipDover!  TCZ  has certainly been looking very promising for those with GCA and, if it also proves successful for PMR, then whoopee!  Your experience is more proof perhaps of just how close PMR and GCA actually are along the vascular spectrum....or how many cases of diagnosed PMR are actually GCA!  Stay well!smile  

      

  • cheryl74384
    cheryl74384 FlipDover_Aust

    Posted

    what exactly is actemra, and what is it suppose to do for pmr, i have been on 20 mg since beg of nov, and am still having symptons , shoulder especially, sometimes buttocks and hamstrings, insomnia etc, my rheumy been away 2 weeks, not back for another week, do want to ask her about this
    • Anhaga
      Anhaga cheryl74384

      Posted

      If you google tocilizumab as Flipdover suggested you will get the information.  It is a very expensive drug which has not yet been approved for general use in treating PMR mostly I suspect because it costs hundreds if not thousands of times more than pred.

      You should wait to find out what your definitive diagnosis is, at least as much as your rheumatologist will be able to determine when you've got that pred dose down.

      Tocilizumab (brand name Actemra) is used for RA and has recently proven helpful in clinical trials for treating GCA.

  • maid_mariane
    maid_mariane FlipDover_Aust

    Posted

    Have you stopped prednisone and mtx and just on Actemra. How long do you stay on Actemra or do you wran off it to.

    Mariane

    • FlipDover_Aust
      FlipDover_Aust maid_mariane

      Posted

      I'm still on 20mg MTX, but I suspect I'll be stopping that after my next consultation with the Rhuemy. I'm dropping pred at .5mg a week (my decision) with no side effects. Currently down to 5.5mg daily.

      I have no idea how long I'll be on Actemra - the free trial only goes until Sept 2017, so we'll have to see if that pushes me into full remission by then.

  • alward
    alward FlipDover_Aust

    Posted

    My dad has gotten approval to start this drug after the first of the year.  I"m praying that it has a similar afect for him and will help him reduce his prednisone.  It is wrecking havoc on his body.

    • alward
      alward EileenH

      Posted

      Yes, GCA and PMR.  He is in the states, in Ohio.
    • FlipDover_Aust
      FlipDover_Aust alward

      Posted

      I was skeptical, but I sincerely hope he has the results I've had so far.

    • stella-dk
      stella-dk FlipDover_Aust

      Posted

      I´s so great to hear you are doing well on Actemra. You give hope for many. I wish you all the best in the future.

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