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ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/25/2008 8:32 AM (GMT -7)   
Hi everyone...I haven't posted on here in quite some time, but am needing some advice from others who understand.  I have been participating in a clinical trial, taking the drug that will be marketed as Cimzia, for about a year.  It was helping much better than anything else had (lost response and started having allergic reactions to Remicade) until winter came.  The arthritis has been killing me.  I am miserable everyday.  Still working, but miserable.  Since the clinical trial limits what other drugs I can take, I am somewhat restricted on trying new things (doctors wanted to try sulfasalazine but can't on the trial...could help with the Crohn's and mess up their results).  Basically, I'm just told to take as much of my current pain meds (Ultracet) and arthritis meds (Salsalate) as allowed.  I've also tried getting a cortisone injection in each ankle (can't do larger joints due to the small amount of steroids allowed on the trial), but the one shot wore off after only a week (other ankle is still feeling better, but it's only been a week and a half).  My dilemma is whether to suffer until the winter is over and hope that I get better again then (since I was doing great until winter came) or to discontinue the clinical trial and try Humira or something like Sulfasalazine.  The issue is that if I get out of the trial, I cannot get back in and right now, it has helped more than anything else has.  There is no way to know if anything else will help any more than this drug is, so I am hesitant to withdraw.  Also, the drug is free through the trial and I get paid to do it, so that is better than paying for Humira.  Does anyone else here have very bad arthritis and any experience with Humira, as far as the joint pain is concerned?  I appreciate your input. 
 
 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 2/25/2008 12:50 PM (GMT -7)   
My heart goes out to you! I hope you feel better soon! How much longer is the clinical trial? I would stick with the clinical trial if it is more than halfway through BUT if you absolutely can't take the pain try Humira. Are you able to exercise at all? I think if you can move around a little bit (get in the pool or ride a stationary bike) you may feel a little bit better. I will keep you in my prayers!
Battling w/ CD for 2 years...
Osteopenia in the spine caused by prednisone
Currently on Remicade


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/25/2008 1:25 PM (GMT -7)   
I'm in the long term phase of the clinical trial now...technically, it lasts until the drug is either available on the market or fails to get FDA approval.  Originally, I heard that the drug would be available on the market this spring or next but, I've read that more clinical trials are being required by the FDA, which could set it back a couple of years (this is all per the internet...don't know how much is accurate).  I do exercise almost every day and the days that I don't are due to the pain being too bad.  Pilates and the elliptical seem to help, although I've been having to modify some of the pilates exercises lately.  I got addicted to the gym when I first started on the trial and got better and was going 11 hrs a week.  Now, I hurt so bad, but I'm still addicted to it and it honestly usually makes me feel better to go move my joints.  So, I still try to go at least an hour a day (provided I can take my pain med right before I go), but limit it to the elliptical or bike, if my joints hurt too much.  I think I go way too much for someone with this pain but, being in classes where I have to concentrate on doing exercises actually gets my mind off of the pain sometimes.  And again, I am addicted to it and the stress relief it brings.  I guess I will try to hang on for another month or so and hope that warmer weather will make a huge difference.  If not, I will drop out and try Humira.  Thanks...just wanted some opinions before I see my GI next week and have to discuss the trial.     
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4

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