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Tecfidera Terror: Things They Don't Tell You

Day 18 of my Tecfidera trial dawned with another Snow Day and time out of school...Thank Goodness. Around noon my stomach began to cramp and I just felt yucky., but I made it through the day and successfully got of to school the next day.
And was struck once again with cramping. 
After school I went home, ate some homemade chicken noodle soup, took my meds, took a nap, woke up, had diarhea, went to bed.
Got up the next morning and felt fine. Showered, ate toast and tea, took meds, went out for an after noon with my family. 
Family trip cut short when I commenced to throw up and have diarrhea (in a department store restroom, thank goodness). Went home, slept for three hours, woke up, ate a little something, took meds, had diarrhea, slept for another hour, woke up, threw up, had diarrhea, threw up, had diarrhea, threw up...Just like a broken record for nearly all night.

I did not take any Tec all day yesterday and felt a bit better.  Since I couldn't contact my neuro on a Sunday and had no success reaching the
Biogen nurses on the phone, I got on FB to research my dilemma. If you know me at all, you know that I am a FB junkie, but not in the chat line capacity. I lurk, I read, I play games, but I rarely comment nor do I post much of anything personal. Well, the conversation that ensued was extremely helpful, disturbing, enlightening, confusing, and frightening.

Prior to starting Tec I researched, read, and asked questions, but nothing prepared me for the experiences of this weekend. I was on Days 17-19 and felt just fine. Surely any adverse side effects would have shown themselves by now. The flushing was short lived I was confident that I could do this.

Oh boy, oh boy...
Things are never as easy as they appear.

I am not condemning Tecfidera, but I feel extremely mislead. These side effects are nothing to keep secret. I have basically lost three days of my life to a misery that has frightened my family, added stress to my life, and probably contributed to the other M symptoms that has kept me out of school today. 

I plan to call my neuro this afternoon, but I need to get my emotions in check first. I am light headed and my hands are tingling. My head aches and, quite frankly, I feel like I did on the day I had my first documented exacerbation.

No one seems to be able to tell me exactly what Tecfidera has done for them that would convince me to go through this again. it is not fair to me, my students, my family, my colleagues, even my cat. I will gladly live with my drop foot and aversion to heat if that keeps me out of the bathroom and actively involved in my daily life.

I do appreciate the comments collected on the FB page that I contacted. If nothing else, use MSers do stick together in this MonSterly family we share.
Maybe these words of experience will help others in this situation.

  •  Call MS Active Source 1-800-456-2255 they have 24hr nurses to assist us. After it tells you the business hrs they have more options to speak with someone leave a message for a nurse. I was told by my neuro to keep Imodium, aspirin, zyrtec, pepto bismol/tums, & gas x on hand. Do you pre medicate & eat before taking the tec?
    18 hrs · Edited · Like · 1
  • My stomach symptoms started much earlier, like 4 days after I started the full 240 dose, so 11 days in. I would lean towards a stomach bug if you haven't had any issues before this. However, taking Tec with just a piece of toast and/or a few saltines could definitely make you sick if your tummy isn't feel well to start with. My neurologist said it needs to be taken with a full meal and not a snack. I had to restart with a slower titration and have done fine without any stomach issues. Hope you get it figured out and feel better soon!
    18 hrs · Like · 1

  •   Yes. Taking it with fat and protein helps. Put some peanut butter on the toast and saltines. And eat regularly throughout the day. I know it sounds like the last thing you want to do, but eat. Weeks 3-5 are the worst. It gets better. Hang in there!
    17 hrs · Like · 3

  •  Also you can ask your dr for a script for Singulair. It has been proven to help with the stomach side effects of tec. But yes, it is probably from that. You can also call your dr and ask him to call in a script for more 120's and start over with a slower titration to the full dose. Sounds like you need that. 
    17 hrs · Edited · Like · 2
  • Ask your doc for Zofran--I had similar issues as you---the Zofran stopped the naseau within 30 minutes--try this before you quit Tec--Good Luck!
    17 hrs · Like · 
  • My neurologist also prescribed some anti GI spasming pills. I've only had to use them once but they were a life-saver. My MS specialist said Tums also help, but I've had good results with Alka-seltzer plus original for indigestion and upset stomach.
    17 hrs · Edited · Like · 1

  •  Be sure and take your pill with fat and protein, and always after a full meal. Some of us really have to keep a full stomach or we have vomiting issues. It's really hard when you're vomiting, but the only way to stop the cycle is to eat. For me, none of the anti-nausea pills really worked, they only took the edge off. I had to make sure to eat every 2-3 hours, even at night, or I was vomiting for the first 4 months. But I was an extreme case, most people aren't like me.
    17 hrs · Like · 1

  •  Pepcid AC works for stomach issues for me. It can be awful the first few months of taking Tec. It does get better. I'm so sorry you're having so many issues at first. Be sure to eat before and after you take the pill. Eat often throughout the day to alleviate any possible return of stomach issues. I've learned to eat every two hours whether or not I'm hungry. Apples with peanut butter works as a "Tec" snack. Good luck in finding a resolution that works for you! Yogurt or something light might do it. 
    17 hrs · Like · 1

  •  Sounds like Tec. I ended up on the hospital for these symptoms. I've been on Tec since December 19th and my symptoms got worse. My neuro put me back down on 120mg twice a day for a week and then going to bump me back up. The side effects have been horrible for me. My neuro dr. Really wants me to try to stick this out. Not sure if I can. I lost a week of work 
    17 hrs · Like
  • Lisa McCombs Thank you, all, for your words. I plan to call my dr. tomorrow, but at this point I just do not know if this is the treatment for me. MS is difficult enough without all of this nonsense. Missing work is not an option. If I have to be on something, I might consider going back to Beta Seron.
    17 hrs · Like
  • Food will definetly help!! Crackers/toast is not enough. I get little microwave breakfast sandwiches( egg, cheese and sausage) for the morning dose and regular dinner before my PM dose and haven't had any stomach issues. Find what works for you..hang in there, it'll get better!!♡♡
    17 hrs · Like · 1
  • some sort of fatty protein prior to taking tec. peanut butter, cashew butter, sausage patties, etc. this helped me tremendously. and it only lasted about a week, so if you can push through its worth it in the long run
    17 hrs · Like · 1
  • Lisa McCombs The biggest problem right now is keeping anything down. And I mean anything.
    17 hrs · Like · 1

  •   I know that the thought of eating is unbearable but it will help..poor baby:(
    17 hrs · Like · 1

  • I know, Lisa, honestly I do. I've been there. But really, the way to break the vomit cycle is to get a full meal down. Tecfidera is absorbed into to body best with fat and protein, so if those things aren't present it causes problems for some of us. I know the hardest thing in the world is to eat when you're nauseous and throwing up, but the only way to make it stop is to eat. Chocolate peanut butter milkshakes were the first thing that I was able to choke down enough of break the empty stomach cycle. Hope this helps, and best of luck.
    17 hrs · Like · 2

  •   This happened to me at the end of the 3rd week on the maintenance dose. You have to stop it to know for sure if it's the Tec with your docs consent. I restarted with an abridged dosing schedule because I had started to feel better on it. I took 120 once a day for 2 weeks, 120 twice a day for 2 weeks, 120 in morning and 240 at night for 2 weeks, and then the maintenance dose. I'm ok now. Do 2 tablespoons of peanut butter before and your Neuro should back you off. It's really a fabulous and safe drug. This is very common and they are considering changing how it's initially dosed. Aspirin an hour prior to taking it helps the flushing also. I'm so scared of the other more dangerous DMD's that I was determined to make this drug work.
    16 hrs · Like · 1
  •   I think it might just be stomach bug if you didn't have stomach problems for three weeks. I wouldn't give up on Tec yet, but if you can only stomach toast and crackers that doesn't give you the fat/ protein Tec needs to buffer it until your stomach adapts. If you're throwing it back up anyways, you could pause with Tec until your stomach settles, then start again the way you have been doing it before the stomach issues started.
    16 hrs · Like

  •   My neurologist said it's very common to get ill in the 3-4 week mark and it's supposed to ease up after 6 weeks.
    16 hrs · Like · 1
  •   Actually Karla this can happen in the third week. It's hell week as everyone has named it. 
    16 hrs · Like · 2
  • .. If it were me, I would stop taking it for now. Call your Neuro and tell him what's happening. Get a script for more 120 pills and stay on them longer than normal. Then get a script for Singulair for the stomach issues. You'd be surprised how many people did this and had nothing happen after. Some people need a much slower start to adjust. If you can do this and it works out you will be so glad you did. Def call the dr tomorrow. You don't need to be sick on it like that.
    16 hrs · Like · 2

  •  Sounds like my Tec experience. I went through it a few weeks after starting Tec and it lasted on and off for 3 weeks. I had 2 bad episodes that were similar to yours and I am NOT a puker, I never ever throw up. I did for 2-3 days at first and again 2 weeks later for a few days. That all subsided and I haven't had any issues since that last episode which was end of July. Hope you can push through!!!
    16 hrs · Like · 2

  •   Yes, I did this well into my year on Tec. My husband was out of town and I got a migraine. I have 3 kids so I powered through but didn't eat. Nausea, vomiting and stomach pain for 3 days. Even through the nausea I was starving. I finally caved and ate a Subway sandwich. I figured that would at least give me something to throw up since I was tired of dry heaving. It solved my stomach issues. Go eat and you will feel better. 
    16 hrs · Like · 3

  •  Peanut butter, peanut butter, peanut butter! If it's tec related this will really help.
    12 hrs · Like

  •   Been on Tec since August 2013 and no issues whatsoever!! Ask
    your doctor for more 120's or call Biogen and ask for them. The doctors and Biogen have finally realized that the best way to medicate is to dose slowly and that, YES, doubling the medicine after a week is hard on the body (DUUUUUUUUHHHHHH). You might want to go back to the 120s for maybe another 2 weeks, then a 120 in the AM and a 240 in the PM for the same amount of time and then the full dose thereafter of 240 twice a day. I will also suggest Greek Yogurt(flavored, of course) for the AM and whatever you eat, wait at least 10-15 minutes AFTER you eat to take your meds!! You're fine!!!
    12 hrs · Edited · Like · 1

  •  I have been on tec for 1 1/2 years. Was nervous about doubling. It was the 3rd med I was trying since 2012 so hoped it would workout. No problems except slight burning inside. I have always taken it with a meal. Our bodies all react differently. I hope you find an answer. I like the peanut butter suggestion. Take care.
    12 hrs · Like · 1

  •   I had 2 weeks of nausea and throwing up lost about 10 pounds felt and looked awful. Got Lansoprasole and some anti sickness tablets that didn't work got some different ones and they sort of did but not really. Pooed myself twice with uncontrolable diorea [can't spell]. Me and my partner run a pub and this was over Christmas and New Year and I could not work so it was hard for him and the staff. I carried on taking Tec throughout, on week 6 now. Got my appetite back still taking the Lansoprasole and anti sickness tablets but the dose is reduced. Haven't been sick since new years day and don't feel sick very much any more. I continued to take it and am so glad I did. They do say what makes you bad makes you better which is why I continued to take it. Am feeling much better now and seeing slight improvement with a lot of my MS symptoms. My advise would be take 2 weeks off work and see it through, Good luck. xx
    12 hrs · Like · 2

  •  yes i have I have been on tec since mid march last year the 14th of april I spent 281\2 hrs throwing up every 30 mins, then really not to many issues other than hot flashes till the 14th of june then I threw up for 25 hours every 30 mins. after june's day of adult diapers and a puke bucket with me at all time's i quit eatting with my morning dose of tec and i had no trouble with flushing stomach\GI troubles. then i had another round of illness in dec but was determined I had the norovirus i missed 5 doses of tec and all other meds and couldn't eat for 3 days without it running out of me like water.
    11 hrs · Like

  •  It could have also been the Flu. Make certain that water a full glass every Time you take any meds.
    11 hrs · Like

  •  I think you have a bug...but jmho
    10 hrs · Like

  •  I had pretty severe side affects when i got up to full dose .I laid in bed clenching my stomach,head hung over a trash can for at least a month..Eating high fat/protein snack before seemed to help,as well as antacids and Probiotics..
    If i were you,i would skip a dose to see if nausea,vomiting and diarrhea lessens. Perhaps you can't tolerate tecfidera.So sorry your going thru all of this.
    8 hrs · Like

  •   It sounds like you're not eating enough with your Tec. It really helps if you eat Protein AND fat. Try putting peanut butter on your toast. It does get better!! I've been on Tec for 18+ months.
    5 hrs · Like

  • Write a comment...
Honestly, I do not have time to deal with this extremely complicated medical situation right now. I am home from work today because of this crazy dizzy spell, but I will hydrate and eat healthily today and be back among my students and co-workers tomorrow.
And I will think about resuming some type of MS treatment. Just not right now. I took myself off of Beta Seron nearly five years ago and have dealt just as well without it. Nothing has changed except my drop foot, which I can control pretty well with exercise. So, it's basically up to me to take of what I can.
Thanks for reading.
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