Had the screening for the new RA med trial today | Arthritis Information

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Hello folks,

Well, I may be in the trial.  Had the screening tests today.  More blood draw, lots of questions on medical history, physical exam,  specialist pressing on each joint recording the pain level, chest xrays (an addition to the hand/foot xrays already done), sign a bunch of forms --- and oh, the pleasure of peeing into a cup Multi-center, randomized, double-blind, parallel group study of the safety, disease remission & prevention of structural joint damage during treatment with tocilizumab as a monotherapy & in combination with methotrexate versus methotrexate in pts with early moderate to severe rheumatoid arthritis"

Four groups:
- TCZ + MTX placebo
- TCZ (higher dose) + MTX
- TCZ (lower dose) + MTX
- TCZ placebo + MTX
Randomized, don't know which group I will be in.

2 year study, they will adjust after one year depending on results.  I have to go in about every 4 weeks or so.   Not sure how the screening will turn out, but the people I met were great, it will be good to work with them.  Of course I am not yet sure if I passed the screening, but they said the signs look very good.

Here is more on TCZ:
http://en.wikipedia.org/wiki/Tocilizumab


http://www.actemra.com/
http://arthritis.about.com/od/brms/a/actemra.htm
http://www.rheumatology.org/publications/hotline/2010_02_03_tocilizumab.pdf

Does anyone have experience or knowledge about TCZ?



Roland

I know we have one member, Suzanne, that was supposed to start on Actemra, but haven't heard if she actually did, or how she's doing. My RD has also discussed switching me from Simponi to Actemra, but wants to wait until after I have my knee replacement revised. I hope you get in the study, and that it does good things for you! Keep us posted.

Yep, I'm on Actemra and it's the first biological I've been on that looks like it might actually help.  I had my first dose in April (1 hour monthly infusion at local hospital) and had no side effects whatsoever.  Right away, my CRP and ESR which have been about 10x normal for 5 years, dropped to normal ranges.  Gradually I started feeling less breakthrough pain and the perma-swell on my ankles improved slightly.  Then in July my 4th dose was delayed about 10 days due to insurance changes and I had a week's worth of horrible pain while my inflammatory markers popped back up.  After I got my dose, it went back to normal again.  Today I'm getting my 5th dose and starting on a double-dose my RD hopes will give me better results.

I don't take MTX because it raises my liver enzymes, but take Imuran (azathioprine) instead which is a similar immunosuppressant.
 
Obviously under the study the meds will be covered, but for anyone else reading, my co-pay per dose is about 0 on BC/BS PPO (hospital actually billed close to ,000). Also, Actemra has a patient assistance program to help pay 80% of the co-pay for the medicine.
 
Roland, I really hope you're able to get into the study, and that maybe Actemra will be the med for you.  I am supposed to talk to my RD tomorrow about starting actemra.  Of course-gotta get the "get out of jail free card" from the hosptial first.  Hit the Road!  Can't get a read from the docs if this will happen today.  I am thinking it will be an after dinner decision :(
 
My main concern about the actemra-well aside from missed work for the IV's-is my vein access.  I have awful awful veins.  Since surgery last Thursday-I have had 9 new lines started.  Each with at least 5 tries.  This is not abnormal for me.  While on Orencia, the dr. talked about a port.  This is one reason why I was happy to switch to the Rituxan.
 
Good luck on the trial.  It's a new med-so I haven't heard too many personal accounts.  Keep us posted.  I'm still not sure if this is the route for me.  If not, I'm going to have to backtrack down the ladder.
Thanks for coming back and reporting, Roland - I hope you get in!  I am considering going on Actemra but have co-pay issues and am examining all possible recourses before jumping.
 
Rebecca, I share your concerns re: the terrible veins.  A simple blood test is like getting mugged in an alley for me, then I walk around with welts and bruises on my arm for weeks.
Suzanne,

Thanks for telling your experience, that it looks like it might help,  with no side effects (yet).  But yes, there appear to be some downsides, the monthly IV, and also the costs.  The Wikipedia article mentioned a cost of 9,295 British Pounds, which today is ,615 per year
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