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Crohn's Disease
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Posted 2/4/2010 9:04 PM (GMT 0)
I haven't posted here in over a year . . . was doing okay, but now not so much. I'm at the end of my rope here. Been through almost all the meds and nothing has worked, in fact, most have made me significantly worse. Here are my options -- or else the big C with a bag, which I really don't want:

Methotrexate (Doc is hesitant to try me on this)
Tysabri (Doc wants me to do this one)
Cyclosporine
Clinical trials - although my doc hasn't mentioned these

What would you do?
Posted 2/4/2010 9:12 PM (GMT 0)
Why not Methotrexate? Quite a few have good luck with it and it helps with joint pain too.
Posted 2/4/2010 9:17 PM (GMT 0)
MTX isn't a bad option, but I would do Tysabri. It seems like it's the most effective biologic and I think the PML risk is miniscule. Cyclosporine is nasty and isn't a long term solution anyway. Trials are always an option but what if you get placebo?
Posted 2/4/2010 9:19 PM (GMT 0)
As far as Methotrexate, I'm not sure why my doctor is hesitant for me to try it.

I've read a lot of people have experienced hair loss on it, which I am really prone to -- so I didn't push it at my last doctor appt. I know it sounds silly but I've already lost so much hair from being on and off pred, that I really can't take any more.
Posted 2/4/2010 9:21 PM (GMT 0)
Tysabri scares the crap out of me. plus i had very bad reactions to humira and remicade so i just don't think it will work. i'm obviously very negative now.
Posted 2/4/2010 10:07 PM (GMT 0)
If I were you, I would go for MTX first. My doctor wanted me to go on Tysabri as well, but I refused and insisted that I go on Humira. If the MTX doesn't work... I would give Tysabri a go before the alternative. I read that the measured risk for PML is less much less than the 0.1% they give and those who get it are usually on it for about a year and a half. Good luck getting this figured out.
Posted 2/4/2010 11:06 PM (GMT 0)
Have you tried enteral feeding, or TPN? Sometimes people have great success with that. Me, I'd certainly want to be trying either of those before something like Tysabri.

You can find more information by clicking on the "diets" link in my sig.
Posted 2/5/2010 12:40 AM (GMT 0)
I have not even looked into enteral feeding or TPN --- and none of my doctors have suggested it. I see one in Boston and had a recent consultation in NY. I actually don't know much those other than what I just googled. Will research more I guess.

I did do the SCD earlier this year for 4 months, but I couldn't tell if it worked because I was on 60mg pred at the same time --- and yes, I felt better --- physically at least. I might try it again.

Thanks for all your answers. I really appreciate it.
Posted 2/5/2010 4:04 PM (GMT 0)
Methotrexate is a good option to go for, avoid Tysabri if possible (very rare but possible infection of the brain) but I would ask for a clinical trial for Traficet-EN or Anti MAP treatment.
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