1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Has anyone been treated with Actemra IV? If so, what was your experience with the drug?

Posted , 8 users are following.

nancy80176
nancy80176

I am a 70 year old female, diagnosed with PMR/GCA in November. I was initially treated by my primary care doctor and just in the last week saw a rheumatologist. I am in a flare right now and am back on prednisone 40 mg/day. The high dose is necessary to treat the GCA flair, more so than the PMR flare. The specialist is talking about Actemra IV. I understand it can be expensive, but since the prednisone is quite dangerous for me, I would definitely try it. However, I am concerned about side effects of such a drug.

0 likes, 5 replies

5 Replies

  • jo66120
    jo66120 nancy80176

    Posted

    Hi, I have RA, the doctor was going to put me on Actemra but because of some of the medicine side effects she did a blood test to check my cholestrol, unfortunaly it came back slightly on the high side and because of that she told me I could not take it. Thats all I know about it. Ask your doctor.

  • EileenH
    EileenH nancy80176

    Posted

    There is a lot more discussion of Actemra on the HealthUnlocked PMRGCAuk forum where we do have more from the USA - a few in Europe are on it but it is reserved for more longterm cases/relapses in the UK so not a lot of opinion there. However, much of the discussion was last year, far less at present, which suggests either it is fantastic and everyone is cured (which I doubt somehow) or people have stopped.

    Information from 2 years ago will be fairly out of date as it has only been approved for GCA for less time than that. If you wanted more into about what it is like to be on it, an RA site might be the place to ask as it has been used in RA for several years.

  • FlaSuzi
    FlaSuzi nancy80176

    Posted

    Hello Nancy,

    i too have PMR/GCA as well as Lupus, RA and ANTIPHOSPHALIPID

    I have been on and off biologics, including ACTEMRA for many years with very good success and minimal side effects. in my opinion is was the right decision for me. I had a stroke and that was how my GCA was diagnosed, while already on one biologic, so was switched to ACTEMRA . I am now on RITUXAN and LEFLUMUNIDE and hioe to be off the steroids soon.

    Dont be too afraid of the biologics, they can life life saving, but be prepared to switch again and again when one stops working . It is an on going struggle for the doctor as well as yourself.

    good luck to you!

    Susan

    • EileenH
      EileenH FlaSuzi

      Posted

      Except you have to bear in mind that , while there are several biologics for RA there is only one that is approved for GCA as yet so it is a bit different.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.