Frustrated - Trial Drug failed :(

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 1/31/2009 9:37 PM (GMT -7)   
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!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/31/2009 9:59 PM (GMT -7)   
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.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/1/2009 6:11 AM (GMT -7)   
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
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 223
   Posted 2/1/2009 7:49 AM (GMT -7)   
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


Date Joined Jan 2006
Total Posts : 449
   Posted 2/1/2009 10:18 PM (GMT -7)   
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!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 2/2/2009 2:48 PM (GMT -7)   
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
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Corrective eye surgery and Fresnel prism lense corrected that eye from turning out. It worked. Double vision stopped. Eye is back to work except far poorer vision than the other.  Life looks fairly good (literally) today.
Married with 4 grandkids.


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 2/2/2009 4:00 PM (GMT -7)   
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!! turn

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/2/2009 5:46 PM (GMT -7)   
Thanks, I'm probably going to give Imuran a shot and if it works it works, but if it fails, onto surgery...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old

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