Tysabri

Hi all,

Looking for some help/advice.

My wife (35) was diagnosed with Crohn's (due to the location, the docs could go either way with Crohns or Colitis) in 1997 and has been through all of the drugs. Asacol along with an occasional stay on Prednisone and antibiotics worked well for the first several years. Since then it has been a steady run through the remaining list of drugs with the last few years trying the heavy hitters of remicade and methotrexate. Unfortunately nothing is working and the options are drying up.

Her doc at the Crohn's and Colitis Center at MGH is offering up the options of Tysabri, an Ileostomy (starting as temp), or going in a phase III trial of vedolizumab. Due to her current level of inflammation, the thought is the trail is not a wise option because of the chance of placebo in the trail. She is also thinking about just stopping it all and heading down the holistic approach to see if that is any help.

So we are left with Tysabri and the scare of PML vs an Ileostomy vs holistic. We are looking to hear people's experiences with both such as success/failure with Tysabri, living with an Ileostomy when you're 35, and any luck with holistic docs in Mass.

Thanks so much.

I don't know about tisabri. But I would be very cautious about going holistic.

I've read Jini's book, and learned something. But it is hugely empiric. Maybe you can try going holistic WHILE ON MEDS, and, if you do see real improvement, advance slowly.

I've used Tysabri - and have also rejected all other meds. I'm currently on Cimzia and don't think it's doing anything. My doc thinks it's *maybe* (he doesn't seem to think it's really doing much either) keeping me from hospitalization again. I take steroid suppositories nightly and that is what keeps me half way sane. I started methotrexate a couple months ago and have yet to see a change (though keeping positive).

I periodically keep journals of symptoms - not every day, it would drive me nuts. But, I was reading through my journal from when I was on Tysabri and I was actually better off then than now with all three (steroid supp., Cimzia and mtx). Unfortunately, even though I may have been better, I was not in remission and could not justify the risk. I am a single mom to an almost teen daughter and cannot stand the risk of PML.

The reality of PML with Tysabri isn't very high, but it's very scary when it's you that is taking the risk. (Or in your case, your wife) The way I figured it was, the risk is very, very low for the first few months. It takes a few months to even know if it will help. So, to me it was worth finding out if it even helped to then determine if it was worth the risk. When I realized it was not going to put me in remission, I quit after 6 months. It's a very personal decision and I wish you the best of luck with it - whichever way you two decide!

My hubby is the one with crohn's, and I too am a caregiver like you. I think my answer would depend on how badly your wife is doing. If she is managing to get through each day, and is not in a great deal of pain, ie. crohn's is a simmering ongoing problem, but manageable, I'd give the vedolizumab trial a shot. If she is suffering, in pain, losing her health because she is malnourished, unable to cope with each day, I'd opt for the surgery (with a bag, because j-pouch can be problematic in people with crohn's).

I know surgery is no guarantee in crohn's, but it could lead to a long remission sometimes. I really dislike the possibility of PML, and I would not recommend my husband get Tysabri. I prefer the possibility of remission, however short lived to the possibility of PML.

I'm so sorry you two are going through such a rough time. I hope things will return to normal soon, and that whichever course of action you take will lead to an improvement in your lives.

(((Hugs)))
PV

Hi WhatsNext:
I was reading your post and it sounds very familar to me. I actually used to go to the Crohn's and Colitis center at MGH and recently switched to Beth Israel in Boston.

I am in the same situation as your wife. I am 40 years old and have tried most of the meds out there. My options right now are Tysabri (which my doc is pushing), Methotrexate, or a Cipro/Flagl combo --- or clinical trial meds or perm ileostomy.

I did try the SCD diet last year and don't really know if it helped or not b/c I was on pred the whole time. I'm not sure I gave it a fair chance because it was hard. I'm currently on Cipro and it is helping a bit but my recent colonoscopy was bad bad so I need something else.

Just curious to know what you/she decides. My husband is trying to help me decide too what to do - I am not hopeful that any of these drugs will work and will certainly consider the ileostomy if necessary. I have a doctor's appt on Thursday so trying to get prepared for it...

Keep me posted if you can.
Good luck.

I am on a new study drug at this time that is not working but my other option was Tysabri but my doc refuses to let me try it. He doesn't like the side effects or the drug.

Glad to hear that the Tysabri is helping some. Do continue to keep us posted on how she is doing. Hugs~

WhatsNext??: My doctor wants me to go on Tysabri for 3 months then switch to Immuran (even though I was allergic to 6MP). Not sure why he only wants me to go on Tysabri for 3 months. Maybe it's because of the increased risk for PML after that time, although the PML risk seems pretty small.

Is there a plan for your wife to switch meds or does he want her to stay on Tysabri indefinitely if it works?

Glad it seems to be working.

Hi,
I just wanted to say that I was in the same position as your wife 2 months ago, and I opted for a permanent ileo. I am only 28 and couldn't stand the idea of living the rest of my life with diarrhea ALL THE TIME. I don't always feel the best, but at least I can LIVE. I haven't regretted the surgery once since I had it.

Also, hopefully vedolizumab will prove to be promising as it works in a similiar fashion to Tysabri but from what I understand focuses on the GI area specifically unlike Tysabri.