Introducing myself, and looking for advice on risky drugs

Hi everyone,

I've been reading your stories, problems and advice on here for quite a while now and so I decided that I should join and participate as well.

I'm 19 years old, male, sophomore in college. I was diagnosed with Crohn's when I was 16, quickly failed the first few lines of treatment and ended up on 6MP. I was able to obtain a one year remission on that medication, but starting March of 2009 it stopped working. Life has been rather turbulent since March. I started having quite a bit of bleeding, I was put on 80mg of prednisone, and I started Humira. I had to be hospitalized for a blood transfusion anyways.

I have now been able to taper down the prednisone to 25mg, and I'm on weekly doses of Humira. I'm still bleeding, however, and in the last three weeks my hemoglobin has dropped 2 grams to 9.5, so at this rate I'll need to be hospitalized for a transfusion again soon. I have also lost 20lbs since March, so my BMI is now at 18. My Crohn's is limited to the colon (so far anyways) and the last few colonoscopies have shown 80-90% of my colon to be inflamed.

Since I have been on the Humira weekly for 2 months and I show little to no improvement, my doctors want to try something different.

The two options I am looking at are to start taking methotrexate while continuing the weekly humira, or to discontinue the humira and start natalizumab (tysabri).

I am scared about the combination of methotrexate and humira because of the increased chance of lymphoma when combining an immunomodulator with an anti-tnf. But I'm also scared about the PML risk with natalizumab.

Have you guys had any experiences with that combination, or with natalizumab? Do you have any idea about which of the two options would be riskier?

Thanks in advance for any input.

First off Ellano, welcome to the forums, you should be able to find a ton of information here. I had a similar form of treatment the ended with me on Humira. My GI wanted to try a couple different combination's with humira but I was worried about the potential for lymphoma as well. I looked at the risks of tysabri vs the potential improvement and never looked back. I noticed an almost immediate improvement with tysabri and I have been in "remission" for going on 1 1/2 years. It has worked amazingly for me, obviously no one can tell you that it will work the same for you and there are other people who have not had the same results but for me, what It did for me, was worth the risk.

ellano,when I first asked my GI about taking methotrexate with Humira, he told me that new research was showing you shouldn't take the two together.  My rheumy, on the other hand, said they have been using the combination for years and that she is comfortable with it.  After exhausting all of our other options, my GI said I could do both together.  It really helped my arthritis to add the methotrexate, but then my liver enzymes elevated and I was told I had to stop the mtx. 

I too am scared of the risks associated with Tysabri (I think that's the only drug I'm scared to take) and have decided that I'm not ready for that option yet.  But, if I become the way I was before the mtx again, I may decide the risk is worth it.  It's really an individual decision based on how bad you feel and how much risk you are willing to take to feel better.  My GI did tell me that we would probably know within a few months in the Tsyabri was going to work and, if it didn't, we would stop it then so that the risk was avoided.  So, it may be something that you try and then decide if it works enough to be worth it.