It's just GI problems right?

[BrianH]

That was my thought when I decided to swap to Tecfidera. I have to say, I am highly considering going with Gilenya now.

I started Tecfidera 6 days ago. I have to say, the first 2 days were great, no flushing, no GI problems. However, the past 3 days have been... hell. Basically over the past 3 days I have lost 15 lbs and eaten nothing because I can't. Every time I try to eat something I feel like I am going to vomit.

I can barely take a few sips of water at a time, which is causing me dehydration too. This, as a result, is giving me horrible hang over type headaches because of the dehydration.

On top of that, the diarrhea.. oh my. Not to be blunt and disgusting, but it is like I am urinating out my bottom. There is no solid at all anymore, just pure fluid. I feel like someone is holding a lighter under there.

I called my neuro yesterday and he is going to have me stop taking it for a day. Thankfully due to that was able to eat soft solids today, but the diarrhea still continues. After that, he is going to have me start at 1 a day instead of 2 and day until my body grows more accustomed to it. Hopefully this helps, because I can't stay on this as is.

I literally crapped my pants 3x already, twice during the night. I haven't done that since I was a baby and it makes it so much more embarrassing.

[Sunshine]

Hi Brian! I appreciate you sharing your experience thus far with us. I am sorry that you are having such a horrible experience! I know all too well the experience of not being able to control my bladder and bowels because of my MS but to have it happen becuse of my med choice..ugh! I tend to be sensitive to many drugs and can not toerate the side affects. I have had issues with all of my MS drugs to various degrees but what choice do we really have I took Tysabri for 60 infusion and had what I called my Ty hangover every single time, but it only lasted 4 or 5 days then I'd feel fine for the rest of the month. Feeling like that indefinitely would spin me right over the edge for sure. I cried when I had to finally give Ty up, JC+, but finally did it because we knew BG12 was on its way to FDA. I took Copaxson for the last 10 months...Anyway, I hope that your body will cooperate and you feel better soon Keep us posted Please!

[durgastiger]

Sorry Brian H.

I have to say quite the opposite for me. I started taking it Saturday and I noticed my arms etc were a little redder then usual but Tecfidera with Ampyra and Tizanidine has been a pretty awesome combo for me. The trifecta! Bring it on MS!

You must be sensitive if you are taking 120mg and are already so reactive. I'm not sure where you are in your progression but if your body is pushing the BG-12 out your body it could be a good thing.

Are you still mobile, vertical? How is your diet? Have you tried juicing? Maybe a soup, stew casserole diet?

[MiZz_JoEy]

Ooh wow I'm so sorry to hear this pill is harming you Brian. I had just asked you on another one of your posts what GI issues you were going through. Hopefully starting off slower will do the trick. Is there perhaps other meds you're taking that might be causing the bad reaction when mixed together? Axium pharmacy that sends me the Tecfidera asked me what other meds I did and made sure there were no known interactions. I haven't tried taking the pills without the aspirin half and hour before and then taking it with a meal. Were you doing that or just taking them with a glass of water? I'm thinking that if I were to take them alone I'd get some sort of stomach discomfort. Let us know how it goes...praying for ya!

[BrianH]

I try to eat mostly fresh fruits veggies and meats like chicken. I've never had a sensitive stomach or had bad reactions to medications either. The only bad reaction with any med was nuvigil.

My last ms med was tysabri which I was on for around 5 years. However I recently had a son and couldn't risk PML since I am JCV+.

Also I did take it with food and took aspirin before hand. Even after 24 hours with no pill it hasn't gotten any better. My neuro thought 24 hours should reset me since it is all out of your system by then. My stomach rumbles louder than my 8 month old does still. I'll see how it is tomorrow and discuss with my neuro.

[BrianH]

Oh and the only other med I am on is paxil. Never any trouble with it.

[KatieAgain]

Try to hang in there friend. I get like that a lot when I take certain meds and it has eventually calmed down. Sounds like your neuro is doing a good job with monitoring you.

The nausea can be taken care of. Talk to your neuro about Zofran (make sure it is the dissolvable kind). They use it for chemo patients. I have some right now because I am on steroids. I put one of those things on my tongue and five minutes later...no nausea...it is a great drug.

Here is hoping your body gets use to the med and eating becomes joyful again.

Katie

[MiZz_JoEy]

The nausea can be taken care of. Talk to your neuro about Zofran (make sure it is the dissolvable kind). They use it for chemo patients. I have some right now because I am on steroids. I put one of those things on my tongue and five minutes later...no nausea...it is a great drug.

Funny how everyone's body works differently. I was on high steroids for three months and tapered off but I was happily eating and putting weight on after losing a lot when I relapsed late last year. I noticed that the minute I stopped taking the steroids I would get nauseous the way I used to in the past. I thought it odd so I looked it up and sure enough steroids are sometimes given to cancer patients and pregnant women to help get rid of nausea and vomiting!

[zoysia]

Wow! BrianH, I'm in the same boat as you with this Tecfidera! Maybe not quite not eating, but smells of some foods make me VERY nauseated! Am sad to see that someone else is bothered by this new "wonder" drug; I wouldn't wish what we're going through on anyone!

And like you, the first 2 or 3 days were fine! Wonderful! Feeling so much better, already! Then, on that 6 dose all hell broke loose, for me. I've been burping, intestines HURT and are pressing up against my herniated disk, poopies happen every single time I sit down, every time, and nothing solid. Considered just stopping tonight's dose, but took it anyway. Will call doctor in morning because I cannot function at this level. Also, for me, due to being Type 1 diabetic, my sugars are through the roof!!! Had a very serious hypoglycemic episode yesterday (ambulance came but didn't transport me, thank God!) and I'm blaming this medicine for it. It's messing with my sugars, which for me is not good.

Sadly, I was so very excited, so very hopeful all last year and all this year for BG-12, but am truly considering just letting nature take its course with my MS. It's funny sometimes, sad other times, when the medicines we take to HELP something do more HARM than good.

Best of luck to you and all of us!
We just need to remember that each and every one of us's MS is different from everyone else's and each body reacts differently to any and all we put into it, from water to food to antacids to drugs to candy to....

[MSer102]

Brian have you tried taking Imodium for the diarrhea? And maybe try skipping the aspirin because it can cause stomach irritation even if its coated?

[BrianH]

Brian have you tried taking Imodium for the diarrhea? And maybe try skipping the aspirin because it can cause stomach irritation even if its coated?

Nothing has helped so far. Today is day 3 off the med and it is still getting worse. I still can't eat and now I keep vomiting slightly in my mouth and having to swallow it down. My neuro said stay off it for now until I get back to feeling normal... who knows when this is going to be. My nausea is getting worse and worse. I have some Vistaril from previous issues and it is supposed to help /w nausea and vomiting, but so far it hasn't helped either.

I haven't felt this horrible in years, this is not worth it to me anymore. I don't think I am going to even try to ramp up slower because I just don't want this to happen again. It is worse than most relapses I have had.

[tidesong]

Opposite for me...

And it's been the opposite for me. Nothing moving. Almost feels like there's constriction in my descending colon. This is Day 5 for me, and it's been like this for 2 days. If things don't...uh..move in the next day or two, I'm calling my doc. And so help me...if this stuff inhibits my weight-loss, I'm gonna scream.

[durgastiger]

Anyone doing probiotics???

Just wondering if anyone in here having intestinal issues is doing anything to strengthen your intestine and stomach?

Kefir
Probiotics
Juicing
Protandim
easily digestible foods. GAPS diet?

Anyone in here have upper lower gi tests done?

[Alicious]

The med leaves your system incredibly fast; if you are getting worse after three days off I'd be wondering if it's not something else entirely that just happened to surface at the same time.

Which isn't to say it can't be the Tecfidera, just that it may warrant further investigation fro your neuro/GP.

[GooGooGirl]

The med leaves your system incredibly fast; if you are getting worse after three days off I'd be wondering if it's not something else entirely that just happened to surface at the same time.

Which isn't to say it can't be the Tecfidera, just that it may warrant further investigation fro your neuro/GP.

I was just going to post the same thing! I work in a school, and there is a really nasty bug going around. Anyhow, I hope you feel better soon!