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I am wondering how many infusions of Acterma I need before I start to feel better?

Posted , 4 users are following.

cheryl93521
cheryl93521

I started on Acterma infusions and still feeling real bad. My gosh I was diagnosed with ONE about 3  months ago and went on prednisone for about 15 days. I felt real good then. Doctor started me on the infusions of Acterma and really spent want me on the prednisone, so I end up hurting so severely, call doctor he puts me on a 3 week prednisone, feel better and start hurting when done with prednisone and it is a merry go round with doctor , so each time I go on prednisone it doesn't seem to work as well. Anyone else going through this? Maybe after a few more infusions I might start feeling better. Pain is severe, in tears with pain and can't walk with it.

0 likes, 5 replies

5 Replies

  • Whisper2003
    Whisper2003 cheryl93521

    Posted

    I am assuming your ONE really means PMR. Acterma is for RA. Do you have that too? Your doctor should keep you on prednisone to effectively treat PMR as other drugs will not help your pain. 
  • Nefret
    Nefret cheryl93521

    Posted

    There have been some successes with Actemra for PMR recently.  It's a very new thing and I suppose it's like anything else, it just won't suit everyone.

    Cheryl, if your doctor keeps playing with prednisone in that way then you will find you need more and higher doses each time he puts you on it.  It isn't the right way to treat PMR which is a chronic condition (and I am also assuming your ONE means that).  If Actemra isn't suiting you then long-term pred is really the only effective solution.

    I am guessing you are in USA?  I suggest you search for information on PMR and treatment for it - there are some websites to look at in the pinned information at the top of this page - and take what you find to your doctor.  Actemra is an expensive drug while Prednisone is not.  Perhaps cost comes into this somewhere.

     

  • EileenH
    EileenH cheryl93521

    Posted

    Being very cynical - I imagine the rheumy can charge more for giving tocilizumab infusions than writing a script for pred.

    As far as I know it isn't accepted therapy for PMR - it is used in RA and is a second line medication after DMARDs haven't worked. That is usually the case for new drugs with unknown long term effects.

    If people are concerned about the side effects of a moderate dose of pred I can't for the life of me imagine why he wants to use this biologic medication. If pred suppresses the immune system - this is far more likely to.

    I think I'd be looking for a second opinion with a doctor who doesn't want to play heroics with my health. As Nefret has said - once you start to yoyo the pred dose it becomes increasingly difficult to get things under control. While you can still walk a bit - vote with your feet.

    • EileenH
      EileenH

      Posted

      And having had a quick look online, I have found there is a study currently listed as recruiting patients looking at tocilizumab (Actrema) in PMR. It is scheduled to finish in Dec 2014 so there are not yet even any interim results. In July 2013 it was stated categorically in the study documentation that tocilizumab has not been used before in the treatment of PMR.

      It is one thing to have an unproven treatment tested on you as part of a clinical trial. It is another for a doctor to mess about trying it themself. In a clinical trial you are monitored very closely - and in the trial they are aiming to reduce steroids over a period of 4 months. Your doctor isn't even being that kind. If he really is using this for your PMR then he is effectively leaving you on a totally unproven treatment with no idea whether it is going to improve your symptoms and the way he is using the pred for you is actually possibly making your long term outcome worse. If you were being reduced steadily over 4 months they can see if the symptoms return - and that is part of the study outcome. He is just taking your only reliable means of pain relief away.

      I am all for well governed clinical trials - but this is not one.

    • cheryl93521
      cheryl93521 EileenH

      Posted

      Thank you for posting and reading up on Acterma EileenH. I guess I need to talk to the Doctor more about this Acterma and coming off and on the prednisone. Yes, I have been in a bunch of severe pain and have many times thought I'd go to the hospital to get the pain under control as it is so severe. I have an appointment so going to get straight to the point with the Doctor. I am starting to get it under control as of today as I have another prescription of prednisone.  Thank you all so very much.
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