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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vjewel 03/28/2011

I would like feedback on Actemra and Rituxan from anyone who has taken these drugs. These are the only two I have not taken and I am going to have to make a decision...thanks!
Also, my blood work is normal; yet, my pain is off the charts...anyone experience this?

deleted_user 03/28/2011

Well, I can't answer your first question, as I'm in the same boat lol!!! I'm on Orencia now, but if this doesn't work, it's Rituxan or Actemra for me. I've decided I'm going with the Rituxan (hubby won't be happy but it's my choice). I'll tell you what my rheumy told me - Rituxan is only twice a year (well 2 infusions 2 weeks apart ) given 2 x/year although some people take it more. One of the rare side effects of Rituxan (which scared us off) was PML - progressive multifocal leukoencephalopathy - which is a cousin to JC disease - and it's pretty much always fatal. So when he told us that, we both said no to Rituxan. Actemra is known to greatly drop your White blood cell count so therefore making you at BIG risk for infection, and it almost always elevates your cholesterol profile.

Now the second question - my labs are ALWAYS normal, and the past month I've been MISERABLE!!! Rheumy has me on 10 mg of pred (I've never taken this "much" - yes for me it's a lot) but it does help to a certain extent but not lately - I asked him to up it, he said no. :(

So I suffer! Mind you I'm 3 weeks post op knee surgery also - arthroscopic for a torn meniscus. So not only is the knee hurting the rest of me is too - but I think I flared due to the surgery. Oh well!

Hope you feel better!!!!

Marie

deleted_user 03/28/2011

I don't know about the meds.. I am on Remicade, and ya sometimes my bloodwork as far as the swelling factor shows normal(never the RA factor) but I still have pain. I think some of the pain is from damage as far as mine.

Good luck with your choice what ever it is..
hugs,
Missy

vjewel 03/28/2011

Marie: thank-you so much! your info. has been very helpful to me!
Missy: thank-you for the bloodwork info.
ALL IS APPRECIATED!

deleted_user 03/29/2011

I am doing Rituxan after having issues with Remicade so I can no longer take any TNF blockers I had my first infusion 6 mo ago and getting ready for my next in mid Apr. Ithas worked really well. EXPENSIVE but I aay worth it.

camba 03/29/2011

Good luck with the drugs - sympathy re pain. My rheumy keeps saying I am in "clinical remission' because blood tests ok....And that has been on an occasion when I crawled into office as it were sporting bandages and wrist support...At least we know from this forum that there is an International Society of Non Understanding Rheumies....

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