Actemra infusion

[30048]

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..

[Celtic PMRGCAuk volunteer]

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.

[30048 in reply to Celtic]

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.

[PMRpro Ambassador]

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?

[30048]

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.

[PMRpro Ambassador in reply to 30048]

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.

[30048]

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.

[30048]

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..

[Klah]

I have had PMR For 3+ years and ha d not been able to taper on the DSNS method below 7-1/2...tried repeatedly. My rheumatoid had suggested possible Temporal Arteritis. I have had two infusions of Actemra and have tapered the prednisone from 8m to 6m. Infusion, wait two weeks, drop 1m. It has been remarkable thus far! I feel remarkable...and I am not having the pain or fatigue...or anything else in terms of side effects. I am really afraid to hope this will stick. I was barely coping with a 1/2m drop in prednisone before the Actemra. Because you have confirmed GCA I would be reluctant to rush the taper, even tho you want the cataract surgery. Long-term results are most important. My rheumatoid told me to take the 1m drop 2 weeks after the infusion, provided it goes ok. I know too well when it doesn't feel right!!...but so far, so good. Best wishes to you...be patient😊

[Klah]

Sorry...wanted to say that, since you are in a trial, maybe they want you to do this specific taper...well, I would still challenge that if you are experiencing a flare. I think a flare is a real setback and should be avoided😊

[PMRpro Ambassador in reply to Klah]

This thread is at least 2 years old - the trials for tocilizumab/Actemra in GCA are finished and it is approved for general use in the USA. There are pilot studies for use in PMR in the USA.

[Klah in reply to PMRpro]

Thanks Eileen! How did this 2-year old thread just pop up for me?? Glad you let me know. It would be interesting to hear from these patients now....see how it panned out!

[PMRpro Ambassador in reply to Klah]

I have no idea Klah - I have noticed there have been a load of posts recently on very old threads for some reason. I have assumed that people have been looking for something using google and the link to the thread popped up. How did you find it?

[Klah in reply to Klah]

It came up in my current email!

[PMRpro Ambassador in reply to Klah]

How strange - you should have to click follow for that to happen...