I'm Done with Tec

[alkalinebecky]

Just finished my first week of 240mg twice daily. Today, I went to work, and had to leave 2 hours after I got there. I had to RUN outside to vomit. Multiple bouts of severe diarrhea. I was woken up a couple of times last night by severe stomach cramps and diarrhea. On my way home from work, I had to suddenly pull over to vomit again.

Can I go down to 240mg once daily? Right now, I feel like I never want to take it again. I should mention also, my neuro hasn't officially diagnosed me. He said 75%.

[tracibk]

I am sorry you had such a terrible reaction! I think there are people on here that went back to 120 twice a day but I am not positive.......or they did that for a longer time and then went back to the 240. I hope someone will be able to help! best of luck!

[alkalinebecky]

I feel just as bad now as I did this morning. Still having diarrhea and I just tried to eat some crackers and now I feel like I'm going to throw up again. I can't miss any more work! I took my last 240mg pill this morning around 7am. When will it be out of my system?!!! I'm desperate!

[sardi_g]

I'm sorry you're having such a rough time. That sounds awful! I hope it goes away soon.

I went completely off it during the first month when I started getting severe cramps that would wake me up at like one in the morning. I thought abt going to the er at times but seriously couldn't move. I quit after several days of this. It took a couple days for it to go away after I stopped. Hang in there!

I chose to go back on it but took some precautions and haven't had many effects this time. Nothing like before. I don't even take the precautions anymore - like eating a meal first and taking aspirin and antacid. It's very strange how that week-long break made a difference, if that was indeeed the only factor. I had *mild* cramping during the first two weeks but nothing like before and it totally vanished. Sometimes I get a runny rose but usually I have no side effects at all.

I'd hate to suggest something that could potentially cause you pain but just wanted to include how in my case, taking a break seemed to solve it. I have no idea why or how common this is.

It's hard to have to weigh the risks of all these drugs or take the lesser of evils. Just make sure you've gotten all the necessary information you need.

Good luck, wish you the best!

Sard

[Leeaura]

I was 20 days into 240mg

The first time I tried Tec back in May, I thought it was going to b smith sailing. After all, I was on my 40th dose at 240 mg before I had my first side effect. I woke up one morning w horrible stomach cramps. I called my Neuro. He actually said to stick w it. Side effects were supposed to go away within 60 days. Huh? Don't think so! I quit Tec but the cramps lasted another week.

My Neuro talked me into trying one more time before giving up. I asked him if I could titrate much, much slower and he said yes. I was to let his nurse know when I hit full doseage.

It's been 60 days since I restarted. I've been on the full 240mg dose twice a day for about a week now. Itching and flushing but no cramps so far. I'll try to post my titration schedule after I hit the magic number of 20 days into the 240's.

[laurasari]

My Neuro said you must eat a meal with the Tec and that meal must contain fat he said at least for the first month. I am afraid to change my only issue is gas. In the beginning. I had more frequent bowel movements but thankfully no other issues. Good luck

[alkalinebecky]

Thanks, everyone. I'm still feeling pretty gross. Ive missed two days of work and I can barely eat anything without feeling nauseous and having diarrhea. I'm trying to stay hydrated with juice. It doesn't help that I also struggle with anxiety/depression and it usually gets worse when I get sick. (Being home alone, feeling helpless, etc). Trying to stay positive but I just want this drug out of my body!

On that note, I don't want to make it seem like I hate this drug and that it doesn't work. It seems to work just fine for most people. I seem to have just had a bad reaction to it. People who are on Tec and having success, keep at it!

[cvms]

Juice can make diarrhea worse. Try Gatorade instead maybe. Sure hope you feel better soon!!

[MallyCT]

In addition to juice, try Gatordade or Pedialyte. Again, so sorry this has hit you so hard! Any time you need to vent or chat, just log in and pop us all a line. We have all been there in one way or another. And it's easy to say, Oh don't beat yourself up, but as someone who also tends toward anxiety and depression - I get it. On the "bright side," at least we have more options these days.

[0inone]

I've had dose decreased, seems better so far

You are not alone. I've previously posted severe stomach pain after starting the 240mg. Tried everything everyone recommended, finally i couldnt take it. I stopped it totally for aout 2 weeks, until i felt "normal". I started it again, but only 1x a day. After about 8 days, I dont have any stomach pain, but still get flushing and very itchy on and off every day. It was suggested to try 2x a day, but every other day first then see how it goes. I will try that soon. Still afraid. I hope it will work out this time. Best wishes to you.

[NEgirl]

I had the same reactions, was out of work for a full week and even had to go to ER because of severe dehydration. I kept with it though and started taking my pills with milk per recommendation from my neuro.....no problems since.

[bree2013]

I feel just as bad now as I did this morning. Still having diarrhea and I just tried to eat some crackers and now I feel like I'm going to throw up again. I can't miss any more work! I took my last 240mg pill this morning around 7am. When will it be out of my system?!!! I'm desperate!

I'm sorry you've had such a hard time on tec. Someone mentioned taking it with milk. Have you talked to your doc about stopping a while and then restarting by gradually increasing dosage, etc?

If you're considering stopping tec for good, can you discuss other options with your neurologist?

You're young and there are other DMDs. Not knowing your current symptoms, etc, but maybe Copaxone? A lot of people have success -- yes it's daily shots but they're working on a 3x/wk dose.

Hope you feel better soon. Please keep us posted on how you're doing. Try to keep yourself hydrated -- think of "washing" out any remaining tec.

Bree

[Barnesky5]

Done with Tecfidera

Just finished my first week of 240mg twice daily. Today, I went to work, and had to leave 2 hours after I got there. I had to RUN outside to vomit. Multiple bouts of severe diarrhea. I was woken up a couple of times last night by severe stomach cramps and diarrhea. On my way home from work, I had to suddenly pull over to vomit again.

Can I go down to 240mg once daily? Right now, I feel like I never want to take it again. I should mention also, my neuro hasn't officially diagnosed me. He said 75%.

I called my Neurologist at Johns Hopkins Hospital about the Tecfidera Meds making myself vomit hours after I take a pill. She inform me to take and a Nausea/Vomiting Med hour before I take the pill along with a Tylenol. She also reduce my Meds to 120mg for a month until my body gets adept to the Meds.

[Barnesky5]

Support

[QUOTE=alkalinebecky;1424096]Thanks, everyone. I'm still feeling pretty gross. Ive missed two days of work and I can barely eat anything without feeling nauseous and having diarrhea. I'm trying to stay hydrated with juice. It doesn't help that I also struggle with anxiety/depression and it usually gets worse when I get sick. (Being home alone, feeling helpless, etc). Trying to stay positive but I just want this drug out of my body!

On that note, I don't want to make it seem like I hate this drug and that it doesn't work. It seems to work just fine for most people. I seem to have just had a bad reaction to it. People who are on Tec and having success, keep at it![/QUOte
With Tecfidera there are a lot of people that I hear about symptoms like yours including myself. I have had MS since May 1999 right after a car accident then major back surgery of the L3,4,5 disk .I been on 4 different MS meds and nothing seems to be working. I said this Tecfidrea has to be the drug that will turn my life around. I just starting taking the drug in May 2013. I have taking the Imodium and a Tylenol before I take my doge. I was taking 240mg but it was making me to sick , so I called my neurologist at Johns Hopkins Hospital. She reduce the milligrams from 240 to 120 for a month. That has help with the start of this Meds. Body got adapt to the lower dose , so when I was to start the change over to 240 mg it was not much of a difference.

[Luvmyfamily]

Any positive comments on tecfidera?

I'll be starting this DMD in the next week or so because copaxone has been too hard on my skin-I'm running out of places I can inject. I chose tecfidera because the side effects seemed better than avonex. I hope there are a lot of you that have had a positive experience-these posts are making me a little nervous.