ER trip #2 in 6 days - Onto Tsyabri

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/25/2009 3:06 PM (GMT -7)   
So, I've officially failed Humira. Cimzia now doesn't seem like a viable option. I actually started to like Humira. It was easy to administer, and the first week was great....it's like I immediately re-fracted. Is that possible?!??! And, another question. They d/c'd me from the ER (thank God for a fab doc - he has a sister-in-law AND a niece with this disease...he totally understood) with Dilaudid. I was shocked. He didn't feel like I needed admitted and felt that I was able to control this at home, given the right medications. So, he called my surgeon and he actually used to work out Barnes-Jewish and when he found out I switched to Wash U to see Dr. Stone, he knew I meant business I guess.

I just physically ache all over. It's the Humira, obviously, but my gut hurts, and my bowel movements turned to complete mush yesterday. After 2 ER visits (when I cry about going to the ER for a good 2 hours before I decide to go), the doc decided it was time. So, I'm onto Tsaybri with MUCH apprehension. Scared crapless might be the better terminology. But, it was either this or colectomy. And, as much as I know that a colectomy IS is my future and I've accepted that, I cannot seem to accept it as the option right now.

I do have a question. Is it possible my body is not digesting the pain medication? I was given 2mg of Dilaudid pill form. I am uncomfortable at the moment, and dilaudid normally knocks me flat... I'm at the point I just want to throw every medication out the door. I know I can't do that, but I'm done with it ALL.
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


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/25/2009 3:18 PM (GMT -7)   
Kaycie
Sorry you're having such a hard time. Just wanted to let you know that there is a big difference in being given any pain medicine into an IV and taking it in pill form. It usually doesn't affect your body near as much to take a pill form of pain medicine.

I hope things get better. Hang in there!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/25/2009 3:39 PM (GMT -7)   
Sorry to hear that Kaycie. If you aren't ready for the surgery, then I think the Tysabri is the right call. Take care.
Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/25/2009 4:03 PM (GMT -7)   
Kaycie . . . I wonder if a pain patch would give you better results?

Sorry you are having so much pain.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/25/2009 5:37 PM (GMT -7)   
Hi Kaycie not sure about the pill form but if it isn't digesting maybe crushed in a little pudding or something.. Really sending out some good thoughts your way ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/25/2009 8:47 PM (GMT -7)   
Kaycie - I just wanted to say I'm sending good thoughts. I really hope Tysabri brings you relief. Like you I figure that an ostomy is in my future at some point but I am not ready. I keep hoping that Prochymal will be approved and help so many of us who have failed all other meds. Hang in there... hugs!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  SLIPPING big time.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

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