Actemra

Posted by hoosierlarry @hoosierlarry, 3 days ago

The more I read about all the crap that can go wrong with this medication the more questions I have. it says you need constant blood tests. OK. What blood tests, how often.
It seems like since everyone reacts differently that we are all on our own identifying side effects and when you take action on them.
I start the med on 8/18 .
The other question is why infusion versus shot???

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I don't have any experience with Actemra but while you wait for others with experience this article might help answer some of your questions - Actemra dosage: Forms, strengths, how to use, and more: https://www.medicalnewstoday.com/articles/drugs-actemra-dosage.

You also might want to scan through the many other discussions and comments from members who have experience with Actemra. Here's a search of Connect with the links - https://connect.mayoclinic.org/search/?search=+Actemra

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I started my Actemra infusions in January 2024. I chose the infusions. If I would have gone the shot route, my Medicare Part D would come into play. I would have had to deal with co-pays. I'm not even sure if my prescription plan would have covered them. I know that Kevzara is not approved in my plan. My Medicare and supplemental pay for the infusions, since they are administered in a medical setting. As far as bloodwork and frequency, your doctor should know what the manufacturer recommends, and include that in an order for the bloodwork. I double checked my required bloodwork and frequency yesterday, when I got my infusion. My rheumatologist followed the recommendations that the manufacturer recommends. As far as side effects, I have not had any. I have kept a health journal since June 2024, when I was first diagnosed with PMR/GCA. That's when I started on 60 mg. of Prednisone. I listen to my body and if something that doesn't seem right persists, I contact my rheumatologist. (The practice has texting set up. When I have questions/concerns, I send a text that is forwarded to the PA. I usually get a response the same day.)

Actemra has been a game changer for me. I've been able to step down my Prednisone from 15 mg. to 5 mg., without any flares. I feel so much better. I'm not 100%, but I'm 100% better than last summer. Good luck to you.

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