Anyone on double-dose Actemra? | Arthritis Information

 

It's been awhile since I've posted, and I'm happy to say that the Actemra finally seems to be the med that's working.  Since it's been working kinda slowly, the last two months my RD has upped me to double the dose (which is based on weight) and I've had no side effects whatsoever.  The only issue is that the hospital pharmacist has been calling the RD saying that my dose exceeds the max...

Now it isn't clear to me exactly why the hospital still gave it to me (they called RD before and after I got my infusion yesterday...what are they going to do, take it back out???).  It also isn't clear to me whether the max is a recommendation or a hard safety limit or what.  I'm just wondering if anyone else is on a double-dose, whether they've had any side effects as a result, and whether they've had any issue getting it from the provider.

I'm so glad to hear you are feeling improvement from it, Glow.  But disturbed to hear it is taking a double dose.  I'm having a hard enough time getting approval for one dose.InnerGlow, I had 2 single doses before 1 double dose- no side effects- but medicine didn't work for me. Hope it works for you. It was the most expensive IV medicine they have right now.My double dose was almost 3500.00-without adding the fees to administer the med and IV stuff. I couldn't go my anyone else as I was only patient receiving it.
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