Normal labs.

[beringer]

My labs have been normal for 8 months, I've been on actemra, double dose for 18 mos with no preds,

when will I be concidered GCA free? And when will I stop the Actemra infusions. Dr says when I am in remission...... When is that???

[30048]

Good heavens that is a huge dose of actemra. It has not been proven that it works on Gca but you may be the test case. I bailed after five months...so let us know how you do. I guess you would have to have another biopsy ?? Ask the doctor what he is looking for other than blood work.

[Klah in reply to 30048]

A double dose could mean anything....4, 8 ml (however they measure it)...every 4 weeks, every week. Or injectables once a week..? Clinical trials for GCA were excellent....not easy to get FDA approval in the U.S.....for what it's worth😊

[evafel]

The blood tests are always good when you are on Actemra.

[jinasc]

Are you taking part in the TCZ trials currently taking place?

TABUL study - go to PMR&GCAuk's website and look under research - read up on it. It was done mainly to see if the Biopsy can be safely replaced with the machine. It can also tell you whether GCA is in remission or not by looking for a Halo, or so I understand.

[Klah]

Don't know the answer to the question...but GCA is so serious, I would not want to rush it.

[beringer]

The dose is by weight & how fast the labs go down. No I'm not in any trial on Actemra. I'm sure happy My Dr. suggested it. My only flare was when My Husband passed, I went back on the infusion, normal labs in 1 month..