Actemra infusion

Actemra infusion

I am currently in a trial and receiving Actemra injections (tocilizamub) once a month. I had my third yesterday. It has brought my numbers down considerably ( from a high of 80 to 8). I have been reducing my prednisone by your methods ( very slowly) and am now on 15 msg. Yesterday the doctor told me to go to 10mg. When I had my flare, my Sed rate was 3 so I am reluctant to move too fast on the lowering. On the other hand, I cannot have my cataract surgery until I get to 7 and my eyesight is very bad. Somewhat of a dilemma . Any opinions???? For background...I have GCA and PMR and have been on this roller coaster for three years. I still have a constant pain in the rear and stiffness in the morning but nothing that I cannot deal with..

7 Replies

  • Although Tocilizumab is designed to work in combination with steroids in helping GCA patients reduce the overall amount of Prednisolone, as you have had a previous flare, it sounds as though you would be wise to continue reducing the Pred slowly, so going from 15 to 12.5 rather than straight to 10mg in the first instance. Can you not confirm this with whoever is in control of the trial? It must be a dilemma when you are desperate for cataract surgery, but if it was me I wouldn't want to risk speeding up reductions that resulted in increasing pain. I'm sorry I can't be more helpful as TCZ is a new drug as far as PMR/GCA is concerned and those of us posting here are unlikely to have taken it. Perhaps someone might come along who has experienced it.

  • thank you for your fast response. i was thinking I would try 12 to begin with and see how it goes. the doctor who is doing the trials is actually a well known man in the field of lupus. He has authored several books on lupus. I told him....only me would have the nerve.....that I was using the method talked about here. He just smiled.

  • I think in a trial you have to come to an agreement with the doctors supervising it because they do have to obey certain criteria. I have no doubt that the doctor is totally convinced that the tocilizumab will cover the drop in pred. The proof of the pudding will be in the eating!

    Which centre are you under?

  • My doctor is Daniel Wallace and he is at Cedar Sinai in Los Angeles. I say I am in the trail but although they have taken my blood etc. I am on the medication as my eyesight is so bad that he could not take the chance t hat I would get the placebo. He feels he can get me off prednisone in six months . I however am not that optimistic. It is called the Wallace Rheumatic Studies Center and he is known for his work on lupus.

  • Hmmm - if I had confirmed GCA I'd be delighted to try the tcz - but I wouldn't be that desperate about whether I got off the pred in 6 months or 2 years. Pred avoids blindness in GCA - any improvement is a bonus!

    Really looking forward to hearing how you get on though - otherwise I'll have to wait for the study to report and that will be ages! Though I do know the people at another centre but of course they don't know who's who...

    We live in exciting times.

  • thanks. I will keep you updated. My eye doctor has saved me twice from permanent blindness...the last time my SED rate was three and the doctor refused to believe it was a flare. That is why I am with Dr. Wallace.

  • Just an additional comment. In my first meeting with Dr. Wallace, he indicated that GCA and PMR were actually the same thing. If that is truly the case.....maybe the tcz as you call it would work for you..

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