A little embarrasing side affect w/ Ty.

[weezier25]

Hi this is my first post and I'm not sure what I'm doing, but I just had a little question that is as stated, a little embarrassing.

I just had my 4th Tysabri infusion, and I was wondering if anyone had experienced diarrhea after their infusion? I noticed when I had my 3rd infusion I got it a few hours after, and I thought it had maybe been something I ate. But I made mental note incase it happened my next infusion and I got it the next day.

I apologize for being graphic too! But I'm sure maybe some can understand..

Thanks

[KarenR]

Hi weezier25! Welcome to MSWorld.

Trust me, there's no question too embarrassing for us.

When I was on Ty I never had diarrhea as a side effect.

However, http://www.drugs.com/pro/tysabri.html does list diarrhea as a side effect in 10% of a study of 627 patients.

I'd still, as a precaution, mention it to your neuro. Perhaps there is something you can premedicate with to help alleviate it.

Be well,

[0485c10]

I didn't experience that but when i first began tysabri i was in a support group that had a woman with that side affect...i still feel guilty about her...we all in the group were telling her to hang on work through the side affect use otc meds, but stay on ty...the entire time she had this side affect, she suffered i (and we) kept telling her to perverse we work through any side affects . We get & stay on tysabri---but that side affect of diarehea never abated for her and she did have to stop using tysabri.

like i said i feel guilty when i think about her and the "support" she didn't really get from a tysabri support group.

yes do report this to the doctor.
tysabri is also used to treat crohns disease, so it is doing something down in your colon , along with your brain.

the chemistry of your colon might not tolerate it. its caused by tysabri.

this side affect may or may not abate, but this time i want to be supportive to some who may have to come to the unpleasant conclusion that tysabri has to be stopped because of a side affect that affects quality of life too much...

btw, thats my guilt memory, i hope more that its a side effect that wears off over time, she suffered for quite a while before she concluded ty was something she wasn't able to use. i just want to be supportive of what you decide if & when the time comes you have to decide.
i hope it wears of and a time you have to decide never comes.

don't apologize for being graphic,glad you posted about it...it gives me an opportunity to do better this time.

[LL60]

weezier - I have had 28 infusions and I'd said I have that side effect about 1/3 of the time. Most of the time mild and it only last a couple of days. I only remember one time that it went on for a bit. Since it starts the same day I have thought it was the Ty, but have never mentioned this to my doctor.

Someone told me to eat more cheese the days around an infusion. That didn't really work.

I have had a few bad moments with it, espeically if we go out the next day, which we do often since I have more energy. But....pretty much, I just get though it. And like I said, for whatever reason it isn't every month.

At your next app. I think if you brought it up and they gave you some hints, could you come back here and share?

[dmclark135]

understand your embarrassment!

I had my first infusion September 20th. Other than a little flushing of the skin the infusion went well. That following Saturday morning at 6am I awoke to some major stomach cramping and nausea. I ended up with diarrhea for about 60 hours. Finally saw my doctor yesterday and blood work confirmed I did not have a virus so we are thinking it must be the Tysabri. Immodium did not help at all so he prescribed something much stronger which has helped so now we wait and see if this happens again after the next infusion. Fortunately my quality of life is good unless I'm having a relapse. I was previously on Betaseron for 4 years but injection site reaction was so bad that I had to opt for a different treatment. I really hope this does not continue.

[weezier25]

Oh wow, thank you all so much! I really really appreciate it and my next infusion is in a few weeks so we shall see how things go. I'll talk with my doctor about the problem and see if I can get any helpful suggestions from her.

Again, thank you very much!

[Ntombi]

I know this is an old thread, but I did a search in this forum, because I had my first infusion on September 18th, and I've had diarrhea ever since.

It varies in severity, but hasn't gone away in two and a half weeks. Immodium hasn't helped, and I'm waiting for my neuro to call a script for Lomotil into my pharmacy. It's gotten to the point where I'm getting dehydrated and losing weight.

I REALLY hope this is a one-off, because I don't want to consider my options if it continues indefinitely. My next infusion is in ten days, and I am worried.

[dlsal]

Nothing Should Embarrassing

I never had this side effect from Tysabri but I have had diarrhea as a symptom of MS. Actually it was one of my first symptoms. Perhaps the diarrhea is not a side effect but a symptom. I had it bad and it would come upon me unexpectedly and at the most embarrassing moments. I haven't had an incident in years but I remember them well. Talk to your doctor about it.