Struggling..

My name is Alexis. I'm 24 and have had Crohn's for 3 1/2 years. I have been on Remicade, Cimzia, Humira, and then went back on Remicade again. I have also been on 6mp, Prednisone, Asacol, and many others. I have all the typical symptoms, fever, diarrhea, stomach pain (sometimes unbearable). I also have oral crohns, which I was put on Thalidomide for. My mouth sores get so bad it hurts to talk. I have tried EVERY rinse, steroid cream, nothing works. Thalidomide worked for a while, but my legs and feet started to go numb, so I came off of it. Remicade works, but only for a few weeks.

I had my last dose of Remicade 3 weeks ago. I had a CT scan last week which showed 1 1/2 feet of my intestine severly inflamed. Remicade works great...for about 3-4 weeks at its max dose of 10 mg/kg.

My Dr. said the last medicine for me to try is the "new" version of Tysabri. I have said no to Tysabri due to the chance of PML (the brain disease which leaves you basically brain dead). There is a new study for an "improved" version of Tysabri, which my Dr. wants me to join. I asked him about surgery, he said surgery is next if Tysabri doesn't work, but is concerned about my mouth being that he can't exactly take my mouth out!

I am really scared of this drug. I am leaning towards surgery, but am scared of what my Dr. will say if I tell him I want surgery rather than being a part of this study.

I am so tired of being miserable. I recently married my boyfriend of 7 years, and would love to start having children. I feel like surgery will give my at least a few good years, and hopefully if I needed to have surgery again years down the road, new medical treatments will be available by then.

I am looking for opinions, should I join the study or try for surgery? Thank you for your help

Welcome Alexis!! How great are the chances of contracting PML on Tysabri? I've never even heard of it, sorry!! Good luck, it's a tough decision!

Thank you for the response! The chances are low, but still scary! 1 in 1000 i think.

It seems they all come with what-ifs, but I agree that's less of a spread than most seem to have. I don't want to over simplify and I'm sure you would know, but my son was having mouth sores, not to that extent, but he started taking a B-complex vitamin and being more vigilant with teeth brushing and mouthwash and they mostly stopped.

Hi Welcome

I heard of tysabri. It was offered to me but then the specialist said instead to try Cimzia. The dr who wanted tysabri thought that if the remi and humira did not work for me then cimzia would not. My mother was not too happy with some of the information that came with the tysabri.
I was told though that if I decide to try the cimzia and it does not work that tysabri would be the other alternative. I am not sure what my decision would be if it came down to it. I would say that you have to make the right choice for you. Like you said if you have oral issues then surgery is not going to fix it. The tysabri possibly can (but I am not sure for oral problems my inflamation is mainly in the ileum and one time this past fall the end of my stomach and begining of my duodenum. That was possibly due to a reaction from medicine though)
Hopefully someone on here is taking it and can give more information to you.

Thank you for your thoughts. I'm trying to think positively. I just am really scared about trying Tysabri. I don't think it's worth the risk!

Do what you feel is right for you.

Hi Alexis
and welcome

This is a toughie! I've heard of Tysabri and the brain damage so like Jen said it would help with the mouth issues but surgery wouldn't.
If you type Tysabri into Youtube you will find loads of films about it and other people's experiences with it, this might help.
good luck with whatever you decide to do, but please don't be bullied into it, this is your choice not the docs!
lotsa luv
Joan xxx

Hi Alexis,
Just wanted to welcome you to the forum. I have not been faced with tysabri question so I can give no input there. All I can do is echo what Jenn and Joan have said. I just wanted to offer support & ear as needed.
Good luck,
Michele

MADiMarc said:

Hi Alexis,
Just wanted to welcome you to the forum. I have not been faced with tysabri question so I can give no input there. All I can do is echo what Jenn and Joan have said. I just wanted to offer support & ear as needed.
Good luck,
Michele

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Thank you so much Michele