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Crohn's Disease
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Posted 1/23/2011 4:48 PM (GMT 0)
I'm hoping to get some advice here.  I was recently taken off of allopurinol and azathioprine due to adverse reactions to them.  My rbc and wbc both plumeted while I was taking them.  I required a blood transfusion and a stay in the hospital during christmas.  Now my gi doc told me to go into manhattan and see the dr. he knows there to get an oppinion on what to do with me since we have run out of treatment options.  I have been on all the drugs; Cimzia, Humira, Remicade, Methotrexate, azathioprine, allopurinol, 6mp, colazol, azulfadine, pentasa, EVERYTHING.  So now I saw the Dr. in manhattan and he suggested going into a clinical trial of either a drug similiar to tysabri but "safer" or a stem cell trial.  Problem is I have a 1/3 of chance of getting the placebo.  So I dont know if it's worth it.  So we decided to put me back on Remicade and now i'm having second thoughts.  I dont know if I want to do it again.  It didn't work the first time and I also read that the chance of having a reaction to it is greater once you've been off of it a while.  So now the only drug I am on is Apriso and boy am I feeling the effects.  I'm teetering between d and constipation.  My stomach is constantly bloated and last night my husand, son and I went out to eat and I had D twice in the middle of dinner.  It was so annoying and I felt so stupid.  Also in about 6 months barring any negatives from my dr's, my husband and I would like to try for another baby so I don't want to be on any drugs that would hinder that process.  I'll be off methotrexate 6 months in february which I was told is the "safe" mark.  Anyone have any suggestions or thoughts on this.  Anything would be greatly appreciated.  Thank you turn
Posted 1/23/2011 4:51 PM (GMT 0)
We have another member here who tried Remicade again, and he did well with it. I say give it another shot. I am sure they will premedicate you first so you don't have any problems. Good luck!
Posted 1/23/2011 5:02 PM (GMT 0)
I am in your boat, reacting badly to all the meds, so my GI has me take Pentasa twice a week and Pred 5 mg if I feel a flare on the way.
Not a perfect solution, but better than nothing.
Posted 1/24/2011 2:56 AM (GMT 0)
If pregnancy agrees with you (I had remission during both of mine) I say get pregnant right now and see what happens after that.  Perhaps the drug trial will still be going then. Or maybe helminth therapy or LDN or stem cells will be more in the mainstream.

{{{{{HUGS}}}}

A liquid diet for now to address your immediate discomfort??

Posted 1/24/2011 4:21 AM (GMT 0)
I am the one that I am pretty sure that Nanners is refering to about going back on remicade. I am doing better the second time and the only real difference is that I am premedicated with cortisteroids along with the benedryl. When I stopped using it the first time, it had gotten to the point that the remicade was only effective for 1 week and then I was waiting for 3 weeks with bad symptoms. This time around it is lasting pretty much the full 4 weeks. I am not in complete remission but it is helping.
Posted 1/24/2011 4:52 AM (GMT 0)
Hi Bella... I just wanted to chime in about pregnancy and clinical trials. I don't know for sure about the vedolizumab trial (like Tysabri) but I'm sure it's like most others. I know for a fact that in the Prochymal trial (mesenchymal stem cells) that you sign an agreement that you will practice two forms of birth control and not become pregnant for 2 years after your initial treatment. This is because there is no safety information about how the stem cells stay in your system and might affect a growing fetus. Aside from stem cells, all trials are experimental medication with little to no safety info. I'd say if you're really ready to think about another baby, I'd stick with known meds.

I'm in the same shoes as you regarding having failed all approved meds. I'm waiting on edge until one of those two drugs are approved. They're looking to be the next ones to come along. Good luck!
Posted 1/27/2011 10:48 PM (GMT 0)
Hi Bella,

Have you seen my post on wellbutrin as a TNF inhibitor its safe, effective and it is safe to take during pregnancy which was one of the things that exited my daughter when she started to take meds for crohns. If you have any interest let me know

Good luck

Ubob
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