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Frustrated - Trial Drug failed :(
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Crohn's Disease
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Kaycie
Regular Member
Joined : Jan 2006
Posts : 449
Posted 2/1/2009 4:37 AM (GMT 0)
I'm bailing out. I'm so frustrated. I received the
open label and now I'm in so much awful pain and I broke out in skin lesions...I'm starting to wonder if I've developed lupus as I've also had TERRIBLE joint pain, but since I only got that after steroids, I'm "hopeful" it's only because of the Pred.
Anyway, I checked up on Tsyabri.. NO WAY IN HELL!
Checking out Cimzia & Humira next (thanks for the saved links at the top).
But, does anyone else know the succession order of drugs? I've failed Remicade. I've though about
stepping backwards to Imuran? I don't know right now...I'm getting more and more scared with biologics. Tsyabri ESPECIALLY scares the dickens out of me!
patientspiders
Veteran Member
Joined : Jul 2005
Posts : 735
Posted 2/1/2009 4:59 AM (GMT 0)
I opted for Cimzia most recently. Remicade was awesome for me, Humira was more than I could handle, and I'm hoping to the heavens that I have the nerve to do this Cimzia stuff. Biologics are scaring me too, but I'm desperate. And my doc and I also agreed that Tsyabri was scary and that we'd both vote for Cimzia first. I don't know... I'm sorry you're going through this too. It sucks to have to decide which is the lesser of the "evils".
I too have thought about
stepping "backwards" to the pills, but I really didn't respond well to any of them when I tried 5 years ago... I just wasn't in any shape to experiment before they jumped to the Remicade, so I'm wondering if maybe I COULD get away with maintenance meds like Imuran once I get my intestines somewhat healed up...
I wish I had something more "uppity" to say... just want you to know you're not alone! I hope you start to feel better soon and that your "lupus" and joint pain disappear with the remnants of whatever it is that's making you so miserable.
gachrons
Veteran Member
Joined : Mar 2007
Posts : 4527
Posted 2/1/2009 1:11 PM (GMT 0)
Hi Kaycie I wandered myself about
the step back process when it came to meds and if anyone has had any luck with it.I know how frustrating it is deciding on meds ..let us know how things go. lol gail
Dave123
Regular Member
Joined : Feb 2005
Posts : 238
Posted 2/1/2009 2:49 PM (GMT 0)
I know how frustrating and disappointed you feel when yet another med doesn't work. I must have tried them all, too, including 5 trial meds. Ironically, the one that helped me the most was Tysabri, when it was still in trials. But I'm also afraid to take it now that it's approved.
Kaycie
Regular Member
Joined : Jan 2006
Posts : 449
Posted 2/2/2009 5:18 AM (GMT 0)
Thanks all! It's been a busy and PAINFUL weekend. :(
All that aside, I'm calling the GI AND the surgeon tomorrow morning. I may opt for a CT scan and colonoscopy to see what's going on and if it's bad enough, I may pursue the surgery. The thing is I'm a permanent ostomy with the surgery, well it's most likely to be that way. My surgeon said we may be able to do a temp ostomy and give my bowel a rest and then rehook it up. As scared as I am of surgery, I'm starting to "feel" like it might be the right step.
I was never scared of the Remicade...but the new ones? I'm not sure I can do that to myself...
I'm done with the trial and I'm NOT going the Tsaybri route.
OH, the FRUSTRATION!
Dave D
Regular Member
Joined : Aug 2005
Posts : 404
Posted 2/2/2009 9:48 PM (GMT 0)
I had to take Remicade for my scleritis of the eye to get the eye under control. After 10 infusions 4 weeks apart I reacted so rather than jump right into Humira, I stepped back to Immuran. That was last September. So far so good.
Dave D
LynnRN
Regular Member
Joined : Oct 2007
Posts : 289
Posted 2/2/2009 11:00 PM (GMT 0)
I'm with you about
the biologics!! Way scarey stuff!! I got drug induced lupus with the Humira,I went back to my old standby of Asacol and Imuran,hoping and praying that continues to keep me at bay,because no more biologics for me!!
Kaycie
Regular Member
Joined : Jan 2006
Posts : 449
Posted 2/3/2009 12:46 AM (GMT 0)
Thanks, I'm probably going to give Imuran a shot and if it works it works, but if it fails, onto surgery...
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