rocking alan

[Sainsburys123]

PMRGCA Is anybody on RoA ctamara I’ve been on it seven weeks am dropping down on steroids with no flare ups but having some nasty side affects. Anyone out there have any info that am an help men

[DorsetLady PMRGCAuk volunteer]

Not personally, but if you change your title to read Effects of RoActemra [or Tocilizumab] you are more likely to get more replies - and it will pick up related posts.

This from the FAQs may help for a start -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I'm on RoActemra for PMR - very few problems at all. What sort of effects are you concerned about? We haven't got crystal balls!!!

[nallufl24]

I’ve been on Actemra for 1 year and 2 months. I was able to get off prednisone pretty quickly with Actemra. The only side effect I have is high cholesterol for which I take Rapatha

[Sainsburys123 in reply to nallufl24]

thank you so much for your reply did you stop after 14 months

[nallufl24 in reply to Sainsburys123]

I completely stopped prednisone at 1 year. I’m still on Actemra. I don’t know when I’ll be able to stop it completely

[Sainsburys123 in reply to nallufl24]

thankyou for the info

[Sharitone]

I've been on Actemra for 15 months, and am down to 1mg of pred. I felt very weird for a little while shortly after the first 2 injections, but it passed quite quickly and didn't happen again. I think I'm still slightly more tired after the injections, so do them in the evening. I also had a problem with low neutrophils after 1 yr, but that was soon resolved after missing 2 injections. Otherwise no obvious side effects. What are yours?