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Honey, I'm home!

Posted , 11 users are following.

FlipDover_Aust
FlipDover_Aust

Hi everyone,

I've been away for a while (tell me you've missed me!) as I've been incredibly busy at work (where I usually spend time reading and writing on this forum) and then on a month's holiday.

In case any of you remember, I started on a trial on Actemra (Tocilizumab) a while back. I've been pretty quiet about it as I didn't want to jinx myself, but I can say that it's been pretty much a miracle for me. From 20mg this time last year, I'm now successfully down to 2.5mg and counting. I fully expect to be off pred completely in a month. I feel well, just fat and unfit from all the pred and inactivity associated with PMR and depression. I do get a lot of chest/ear infections which are a side effect of Actemra (and having no immune system to speak of).

It's nice to be back :-)

 

0 likes, 29 replies

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  • kathy67492
    kathy67492 FlipDover_Aust

    Posted

    Glad to hear of your success with Actemra! I too have started Actemra...have only had two infusions and I feel great & have dropped down 2m in 6 weeks. I am also afraid of being jinxed! It is like a miracle to feel this good and to be dropping the prednisone. But will it last? Will there be other side effects? Feel fortunate to be able to "roll the dice" anyway I guess. I am hopeful that it will become cheaper and more available to others😊

    • FlipDover_Aust
      FlipDover_Aust kathy67492

      Posted

      I'm glad it's not just me that didn't want to risk my joy by sprouting too much! lol

      I'm really lucky as I have mine by weekly injections - which I do myself - so no need to go anywhere near a Dr or hospital!

      Here in Australia it has been put on the PBS (The Pharmaceutical Benefits Scheme is a program of the Australian Government that provides subsidised prescription drugs) so it costs me almost nothing in the scheme of things. If it hadn't been I would have paid the AU$10-20k per year - it's that good!

      The only side effect I've had is the increase of upper respitory infections - ears, throat and bronchitis. Bit of a nuisance but managable. Nothing like the pain and fatigue of PMR.

    • kathy67492
      kathy67492 FlipDover_Aust

      Posted

      sorry..I was reading top to bottom...just caught up! Great to hear such good news!
    • rocketman42
      rocketman42 FlipDover_Aust

      Posted

      Flip....thanks for the update...it was me that Eileen referred to when she stated people on another thread was asking about Actemra. My Rheumy suggested it to me and I freaked out since I never heard of it. However, after hearing your result and Kathy67492 I am very open to the suggestion. 

      Just had a second bone density test and labs today and will be seeing the rheumy again for follow-up in a few weeks to discuss further. Now I hope it's something I can "qualify" for and am anxiuos to get started with it.

      Please continue to keep us posted and good luck !

  • JanSP
    JanSP FlipDover_Aust

    Posted

    Flip,

    I've been on Actemra for almost a year and I'm down to 5 mg pred from 80. My rheumy is saying I'll probably have to stay at 5 for the rest of my life ( I'm 71) since she doesn't think my adrenals are producing steroid. I was taken off MTX about six months ago. I've had GCA for 8 years with 4 relapses and PMR about 6 years ago. I don't have PMR anymore but do have bad back and leg pain from my scoliosis and stenosis. I have had a few lung infections since I started Actemra. Had to do a week of antibiotic infusions while going off Actemra and eventually a lung flush. Not having ear problems. 

    I started Actemra every other week but now take a shot every week. What about you?

    Jan from Florida

    • FlipDover_Aust
      FlipDover_Aust JanSP

      Posted

      HI Jan,

      I'm also on weekly injections, I don't have a problem with it - it only takes a couple of seconds and I really can't wait to get off pred completely - one less pill to take!

      Yeah, it seems the upper respitory thing is pretty common. My rhuemy is a bit concerned about the frequency that I've been getting them and has warned that I could get very sick if things go wrong. I try not to think about that!

  • Michdonn
    Michdonn FlipDover_Aust

    Posted

    Hi FlipDover Aust, glad to hear that you are down to such a little dose. I am at 20 mg on Monday from 30 mg. Could you please explain what method you use to get to the 2.5 dose. Thanks 🙂

    • EileenH
      EileenH Michdonn

      Posted

      Flip is on Actemra Mich - that is a very different matter when reducing pred dose!
    • judy20492
      judy20492 Michdonn

      Posted

      Michdonn, neat trick to get 2.5, split 5 mg tablets in half. I always reduce my dose 1/2 at a time as my body very sensitive to reducing. Hope it works for you.

      Judy

    • Michdonn
      Michdonn judy20492

      Posted

      Hi judy20492, I am on 22.5 now and that is the method I am using. Reducing to 20 mg on Monday, still have a long way to go. Reducing by 10% or less, so it will take some time. Thanks 🙂

  • julian.
    julian. FlipDover_Aust

    Posted

    welcome home,

    tea's in the oven, smile

    I'm pleased the actemra seems to be working

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