Actemra side effects

[winfong]

Can't find any evidence of this anywhere else, but every time I get an infusion, I just have to crawl in bed. I usually have my infusion on Fridays, so the weekend is pretty much shot. Usually feeling better by Monday morning, just in time for work. :^( Wondering if anyone else has experienced something similar?

[SheffieldJane]

I self administer Actemra by subcutaneous injection for GCA/LVV. I swopped my injection day from Friday because it was ruining every weekend, as you describe. I have recently started fortnightly injections and this seems to have improved how I feel. My Rheumatologist is fine with this decision although I do worry about flares, I have never had a full blown one, just pain over one eye.

[mgrogers99]

Yes!!! I had the infusions monthly on a Wednesday. I am retired so didn't have to worry about work. Each month, beginning the night of the infusion, I would have body aches for two days and nothing helped. Hot showers were relaxing .

[jinasc in reply to mgrogers99]

I hope that all of you are using the Yellow Card Scheme to help list 'side effects'

The cards are available from your chemists and the postage is free.

[mgrogers99 in reply to jinasc]

I don't think we have that in the states. I stopped with the treatment after 6 months.

[PMRpro Ambassador in reply to mgrogers99]

You have an FDA reporting scheme:

fda.gov/safety/reporting-se...

[mgrogers99 in reply to PMRpro]

I guess I didn't think of reporting to the FDA because the side effect of body aches was listed. They weren't just little aches either--down and out misery. When you read body aches as a side effect you have no idea of the intensity and what is the 'normal' body ache--if I'm making sense!

[PMRpro Ambassador in reply to mgrogers99]

The point of the post marketing reporting is to establish the REAL incidence of adverse effects. The clinical trials are relatively small in size - the real incidence of less common side effects will only be seen with enormous numbers of reports.

[jinasc]

This related to the USA and there are other websites. I just put Adverse reporting of drugs in USA and there is a whole load of info to be found. I chose this one as it looked easier to read.

consumersafety.org/news/adv...

[Marie1479]

The last couple of months I was on Actemra I felt horrible for about 48hrs. Fatigue, short tempered, weepy and a giant, dark cloud of misery over my head. I knew it would pass and would warn anyone around me to stay away. I knew something wasn’t right. My Rheumatologist said I developed a reaction and immediately took me off after being on for 2 years.