Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Has anyone tried ACTEMRA?

hampton6410
hampton6410
I have currently been taking Orencia since April of this year with little effect. I have not been sick or had any bad issues with it but it's really not providing any relief either. I see my rheumy next Monday to discuss actemra so I was wondering what anyone elses experience was with it, good or bad. I have lupus and RA both so the lupus factor really narrows my choices on RA med choices. I can't take enbrel or any of the self injectables. I am a little nervous about trying actemra since it hasn't been out very long so I would love to hear anyone's experiences with good, infections, side effects, etc. Thanks
BarryD
BarryD
I was on it for about 4 months. It didn't seem to do much of anything other than grossly increase my cholesterol. My Rheumy was very excited about this new med at first but after using it for a few months she is not as impressed. She has indicated that very few of her patients have found benefit in Actemra. Most discontinued using it because of no positive change in their RA or the cholesterol issues I encountered. I have since been put on Cimzia.

Good Luck! I hope it has a beneficial effect for you.
Bistro
Bistro
Thanks for your input, BarryD, and for asking h6410, because mine asked me if I'd like to try it, and have held off. Now I'm glad I did. I've heard really great things about it, but I have heard one story (here at DS) that made me decide to wait, and now this one.

This is really the best place I've found for personal experiences with RA and drugs. Thanks to all.
deleted_user
deleted_user
I was on orencia a little over a year and my RA was still progressing much to the surprise of my RD, so we decided to abandon that treatment.

When I chose to go with rituxan it was the choice between that drug and actermera. My rhuemy felt better with the rituxan as I did I. This drug has the ability to raise your chloresteral 100 points and that scared me because my lipids are already too high. Although I didn't want the riuxan either I flt safer to go that route. I will tell you though if the rituxan fails me I will consider the actermera as that is the only drug I have left. Good luck. marcia
deleted_user
deleted_user
Hi,

I was on Actemra & after initial infusion experienced severe adverse reaction. I ended up in ER with paralysis, uncontrolled blood pressure, muscle weakness, nausea, confusion. The paralysis was the worst part of it (only able to move eyes & mouth a little) & Drs had no idea why or how it was all happening. Drug company said they had never heard of paralysis as side-effect.

I was admitted to hospital but was unsure at time when or if these symptoms would improve. I got 2nd opinion from Prof of Rheumy (special interest pharmacology) who thought that drug caused neurological problems for me similar to what Enbrel can do (i.e. MS type symptoms).

My Rheumy says all of his patients on Actemra are doing well & no one has had problems like me.

It's good to hear on this forum info that is hard to find elsewhere.

I hope it is a great drug for you & improves your RA outtasight!

Take care, Anna