Tysabri

I haven't taken that medication but my approach to this disease has been to push back the necessity for surgery as long as possible... Every med carries a risk, and while none of them are pleasant some are worse then others...

Surgery is permanent. I'm gonna try every option I have before they cut me. That's just my opinion. Others have had great success with optional surgery; yet others didn't get the option and needed emergency surgery...

Hi dt19&99 -

That has been my thought process for the past two years, but the doctors are putting me back on prednisone thinking a lower dosage will help me with the side effects. I've very sensitive to steroids regardless of the MGs. They are starting me off at 30MG, rather than the 40MG I had last time and to be honest I'm scared to take it. It made me so sick and I understand it's supposed to be a "quick fix" because it does help with my Crohns but it's such a nasty drug. Then to top it off with the Tysabri and the risks I feel like I'm better off doing the surgery. I understand there are risks with all drugs, but Remicade/Humira/Cimzira, etc. is the small risk for cancer and that has a possibitlity of a cure and I still have my mind fully functioning. Tysabri's small chance of causing something that's irreversible and turn me into a vegetable scares me.

Hi bella3250 -

Remicade was a wonder drug for me, but I had the same issues you are having. It got me through about 5 weeks and then I would go down hill so fast that last week I would barely have the strength to walk to the infusion center. I had a really bad reaction to it on my last infusion, but part of me wonders if that was from the mild concussion I had the week prior from falling. I did extensive research on the drug last night and all of the reports and information provided is primarily when it was re-issued and approved for Crohn's patients. There are 31 known cases of PML, but that's as of 2010. I haven't been able to find any current information on the medication and that good be "no news is good news" or they are intentionally not publishing it publicly.

I just feel a little overwhelmed and when you are not feeling good it makes it difficult to be your own advocate in order to make the best educated decision for yourself.

dt19&99 said...
I haven't taken that medication but my approach to this disease has been to push back the necessity for surgery as long as possible... Every med carries a risk, and while none of them are pleasant some are worse then others...

Surgery is permanent. I'm gonna try every option I have before they cut me. That's just my opinion. Others have had great success with optional surgery; yet others didn't get the option and needed emergency surgery...

10 years after you were diagnosed with Crohn's disease, it's a good idea to have prophylactic surgery to avoid small bowel cancer. Especially if you're a male or have taken azathioprine/6-mercaptopurine.

My GI says he has never referred anyone to try this drug. He says he just does not feel the risks out weigh the risks. he feels the risks are much greater with this one and that is why the drug is much more controlled in the USA. your Dr cannot just prescribe it. You go to specific places to get it from what I have been told. For me in NC that would mean a 3 1/2 drive to the only place in NC at the UNC Chapel Hill university hospital. Keep that in mind when making you decision.

I was on tysabri for about two years, and had to stop when my previous employer changed health insurance providers and my new plan would not cover it. I was diagnosed with moderate to severe crohns and tried a multitude of medication, none of which did a thing. My GI basically said it was surgery or tysabri. I choose Tysabri. I was put on steroids prior to going on tysabri with the understanding I had to be completely off of them within three months. Within a month of my first infusion I was 99% back to what I considered normal lol. I was on tysabri for 2 years and while on it I was able to eat anything and had no flares whatsoever. After stopping I was still mostly symptom free until last year, now I have a new job and new insurance which will cover it. I'm trying to get back on it.

It is a difficult choice to make and each person will have their own outcome but I'm my case I wanted to make surgery my absolute last choice. Hope this helps somewhat.

If you have a chance at Tysabri--take it.

After three fruitful years, Tysabri began to fail for me in Feb 2011, following my bowel resection. However, it gave me three amazing years of health that were the best years of my life. I was so sad when it stopped working but you'll love those steroid-free years if it works for you. I'm back on the pred, full-strength, along with MTX and Cimzia, and still flaring like theres no tomorrow. I look back at pictures of myself and wonder how on earth i was so healthy--to go running every single day, without a big fat face, eating absolutely everything in sight. it was such a trip. give the tysabri a try, it was the best decision i ever made and i'm just sorry it didn't work for me longer.

now i've reached the end of the biologic line (remicade, humira, tysabri, cimzia) and i have another stricture--i'm seriously not sure what i'll do except stay on the prednisone until Prochymal gets approved, and we've been talking about that for like five years now. Sigh.

I was on Tysabri for 2 years and had to stop for insurance reasons. I have a appointment today for a MRI to see the process of my crohns and then a followup with my GI tomorrow where she is going to let me know if I can go back on it. She said she wasnt sure if I could go on it after being off it but I made some calls to Elan and Tysabri a few days back and everyone I spoke to told me it should be no issue as long as she willing to perscribe it. So im going in tomorrow with that knowledge and Im hopeful i'll be starting back up.

Hey manzyb, i actually didn't have any side effects on the tysabri. I know I was technically immunocompromied, but I wasn't taking any other medications, so my immune system did have some fight left in it. I came down with swine flu while living in the UK and had a few sore throats but that was about it. I'm in medical school so I'm exposed to germs and craziness all the time, and I didn't have any lasting issues.

Now i take cimzia, prednisone, MTX, pentasa cipro and flagyl. I have lost so much hair, am constantly nauseated, have lost so much wieght (im 5-3 and in the double digits) and I'm still having d all day and night. Plus I have a stricture, my third. I developed my first two while on the tysabri unfortunately and I was resected December 2010. I have a scope coming up to determine the site of the stricture --- hopefully its at the anastomoses and I can just have it dilated and injected with some cortisone :(

Prochymal is an infused stem cell therapy that is still trapped in phase iii testing, and it sounds like it really helps a lot of people. There are people on this forum who have responded positively. I've been holding out for years for this stuff.

Mac-gyver: Good luck! My PML test came out negative too. I am going in for my first infusion soon.

How does the PML test work? How do they determine risk for PML? I haven't heard of it before. I'm very interested because I took Tysabri several years ago when it was in clinical trials, when the PML risk was discovered. I only had a few treatments with Tysabri before the study was halted, but it was the best I've felt in the last 10 years. I had full energy and symptoms almost stopped. The only side effect was headaches for a few days after infusions. I've been scared to go back on it and have tried every other biologic and several more clinical trials.

I also did a trial for Prochymal, which was also mentioned in this thread, about a year ago. I had a good response and have been doing well since, but the effect of Prochymal was much more gradual and less dramatic than Tysabri. But it does seem to be sustaining me so I hope it gets approved.

Good luck with Tysabri and let us know how it goes.