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tysabri might be failing...please help me.

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Posted 2/10/2011 6:51 PM (GMT 0)
Hi everyone--

I had my bowel resected in December '10 thanks to a stricture. I continued my Tysabri as usual, and have had no lapses in treatment. February marked my 30th month on Tysabri.

Well, now I'm starting to see some blood in my stool, and my lips and conjunctiva are pale again. My stomach is acting is acting up and I'm having diarrhea ...not like 8908490 times a day, and its not waking me up at night, but its more, and I can tell this is not good, especially considering last month I was having more or less normal stool, once or twice a day.

I can't believe this. I'm so freaking out because I'm supposed to start my 3rd year of med school in May. I have some down time right now because I'm studying for the boards but this is so nerve-wracking...what do I do now? I'm waiting for my GI to call me back but if anyone has any insights/experiences I would be infinity grateful. Please help :( I've already taken Remicade, Humira, and of course 5-asa, 6MP, the rest.
Posted 2/10/2011 6:59 PM (GMT 0)

hey, you need to see your GI. fast. the blood would not be a concern as much as pain and possibly new inflammation, blood could be hemi's, not that big of deal. depends on color of blood. dec. isn't that long ago, so maybe still healing up abit. was your surgery small bowel or colan involved?

AG

Posted 2/10/2011 7:05 PM (GMT 0)
Hey AG

thanks for writing back so fast. the blood is like...after my poop. like poop comes out, and then theres blood drips. whoa, was that TMI? oh well.

you're right, it is pretty soon after. I had my descending colon (most of it) cut out.

GAHH.
Posted 2/10/2011 7:08 PM (GMT 0)
Hi Linn- Maybe pairing the Tysabri with another drug such as Lialda or Asacol if there is no drug interactions. Sometimes you can revisit a drug you took in the past because it may now work in conjunction with what you are taking now. Or, have you tried Cimzia yet? When I was losing response to Cimzia, my GI added Lialda and it put me back in remission for over a year. Unfortunately, I started flaring a few weeks ago so I am in the experimenting phase with some natural products since I have been rapidly working my way through the pharmaceuticals. Hope you are feeling better soon!
Posted 2/10/2011 8:25 PM (GMT 0)
Sounds like your under a lot of stress which could be contributing to the recent issues. I wish you luck and figure things out soon!
Posted 2/10/2011 10:55 PM (GMT 0)
Not the best choice but if Tysabri fails you for sure you could look at Thalidomide. VERY strict controls and not a good choice for long term use but Thalidomide is also a TNFalpha inhibitor and I know of a couple kids who failed everything else but this worked for them.

Patricia
Posted 2/11/2011 3:16 AM (GMT 0)
Thanks so much for all the replies you guys.

Endeavor: do you still take LDN? Who was willing to write it for you? I've heard so many good things about it and I'm def going to bring it up with my GI but I'm worried he won't go for it.

rsl: do you get thalidomide from a GI? I've read about the peripheral neuropathy but at this point, i'm willing to give anything a shot.
Posted 2/11/2011 3:18 AM (GMT 0)
Hey PMedic--

When you were put on cimzia, had you failed on other TNF-blockers? I ask because I've already been through Humira and Remicade, but would absolutely try Cimzia. The reason I went on Tysabri two years ago and not the cimzia was because my GI said, if humira and remicade failed, it was likely that cimzia wouldn't work either. and now here i am, perhaps back to square one. ugh.
Posted 2/11/2011 3:20 AM (GMT 0)
Yes, the thalidomide is rxd by GI.

I didn't realize you haven't tried Cimzia. You should definitely give it a try. The chances are slim but not non-existent if TNF alpha inhibitors have worked for you in the past.

Best wishes,

Patricia
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