I was on Remicade for up to 9 years. Changed to Actemra after too many bad days per month on Remicade. Now, after 3 load-in doses of Actemra, I'm miserable with even more bad days, crippling foot pain and bad hands. Is this normal?
During the first month or so after starting Actemra did RA get much worse before it got better?
Question posted by bromse on 3 Jan 2012
Last updated on 23 March 2013
Answers
ez2bblue
3 Jan 2012
Hi, I was on Rituxan for over 4 years and switched to Actemra. Also just took my third dose on Dec.22. I do think I have felt some affects from the drug but am having horrible side effects.Terrible stomach pain and my whole body bloats up for at least 1 to 2 weeks after dose. My doc put me on Librex and diuretic to help. Also told me I would probably not feel much from drug until about 3rd or 4th cycle. My sed rate has fallen to 1 but doc says Actemra gives false seds all the time. I think you should call your Doctor and ask them if you should be feeling affects of drug by now. Also there is a site called RA Warrior, if you have not gone there do so and post your question either there or on their facebook page. Lots of good info and support here. Hope this helped a little and good luck. I will also go to RA warrior facebook and ask about Actemra.
bromse
3 Jan 2012
thanks ez2bblue.
kaloeding
12 Jan 2012
i was diagnosed with Ra about 2 years ago. I started with prednisone and methotrexate-no help. We then added paquinol-not much improvement. Next was remicade took 3 doses, upped dose for 3 doses,upped dose 3 more doses, no real improvement. Next was enbril-no help. Now I'm on the actemra have had 2 doses and I also had increased pain in wrists and ankles especially, also about 7-10 days after dose I've gotten amall blisters on my face,excessive bruising and a rash. I checked with my rheumatologist about this after the first dose but he sais that those are unusual side effects for actemera but now after my 2nd dose it happened again. I see him a week after my third dose so i"ll see what he thinks then. I hope you have better luck than i"ve had, Kim
MMP
24 March 2013
I've had RA for 37 years. I have been on Enbrel for ten years and have had fairly good luck with it. My new Rheumatologist wanted me to try Actemra, but after only one dose, my cholesteral went way up, as well as my triglyerides. I said,"No more Actemra!" Now my hair is thinning terribly (worse than before). I've been on methotrexate for 28 years. I went back on the Enbrel. But when I went off the Enbrel and had the one dose of Actemra, I had terrible pain so my rheumatologist increased my prednisone to 20 mg. a day for a week, then went down slowly to the "ususal" 5 mg. dose that I've been on "forever". I had a liver biopsy a few weeks ago and it showed scarring from the methotrexate, so I'm seeing the gastoenterologist this coming week to see what he thinks I should do. RA isn't the worst thing a person can have, but it's no fun!!
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Further information
- Actemra uses and safety info
- Actemra prescribing info & package insert (for Health Professionals)
- Side effects of Actemra (detailed)
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