6,937 members10,942 posts


Haven't posted in a while, been sick, but try to read post almost every day. Ask this question months ago if anyone is on at Actemra now wondering how they are doing. See rheumatologist tomorrow and I Dr are all pushing it. Just can't seem to get off of 40 mg. Seem to spike when I get down to 33 or 32 are symptoms and CRP elevated. Was on 40 for four months in the past four months, then dropped 8 mg in seven weeks as they wanted me to get down to 30 into months but was sick and had emergency nose surgery. I just don't know what to do started on 60 December 2014 for GCA after biopsy, was only on 15 mg two months before for PMR. Anything anyone could tell me would be greatly appreciated this group is just so amazing it often makes me cry! I feel bad I haven't been on for a while but just not up to it but do you like to read all of your posts and you guys are in my prayers. I don't do well on drugs and so many allergic reaction's to antibiotics and just have the one kidney. I've ended up with collapse Lungs with nerve blocks and got takotsubo from the two collapse Lungs ( was 10 years ago and doing fine with that now ) but it is still scary. I would have the infusions done at the hospital but still I've had so many procedures go wrong. Again anybody on it I would appreciate hearing how you are doing because it may help me make up my mind, thank you guys again!

3 Replies

I don't think there are many people on this forum on tocilizumab/Actrema yet - it isn't approved in the UK for GCA yet but there are a few in the USA and Australia I know of on another forum. Not sure about here.

If you want to find out more about the drug itself a good place to ask would be on an RA forum where there are likely to be more people on it as it has been approved for RA for several years.

1 like

Thanks PMR for your help I will try that.


Hi Cassie, I don't know if I will be much help but I can give you my experience and the one other person I know with GCA in the USA. The other person cannot get off the pred completely so he is on small amount of pred besides the monthly actemra infusion. He begins to get a few symptoms back the week before infusion and then does good the rest of the month after infusion. Has no side affects from actemra. I am not on any pred ...just the monthly infusion. I do not feel any difference before or after infusion. I was very sick for the first 9 months of GCA and since then I have had mainly severe fatigue. I cant tell you what infusion is doing for me except to keep me from more symptoms. In the last 2 months I've been very good ...tired but nothing I would complain about compared to what I had. Could barely make it from living room to bedroom. I HAVE HAD NO SIDE AFFECTS FROM ACTEMRA.


You may also like...