Cannot tolerate BG12...so disappointed

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.

Cannot tolerate BG12...so disappointed

Postby azmsgal » Wed Jul 17, 2013 5:54 pm

Hi all,

First off, wanted to say I am so happy for those that are doing well on BG12, I wish I could be you!

Dx with MS 2/11, tried Copaxone and Rebif, went off therapy for 8 months in anticipation of BG12, honestly - I thought it was too difficult to tolerate Rebif, and Copaxone gave me the heart attack like side effect twice and it scared me to death.

Finally received the drug Tecfidera, today would have been day 7, but I couldn't make it through day 6. For the first couple of days BG12 was great, NO side effects at all, I felt so blessed. Days 3-6 were brutal. The morning of day 3, I woke from a dead sleep with excruciating abdominal pain. Nothing minor about it, as a matter of fact if I didn't know it was the BG12, I would have been to the hospital by now. The pain blind-sided me, I certainly wasn't expecting the severity of the gut wrenching ripping pain. While I have had no flushing, I have been debilitated by the stomach pain, I have thrown up repeatedly, bad constipation followed by gassy diarrhea. I stopped after the first dose on day 6. I felt mental trying to take another pill well aware of how much sicker I would become. I am so sad and disappointed by this drug, for me anyways.

How can Biogen Idec expect patients to endure this type of sickness for 1+months? I couldn't even graduate to the higher dose, I am too frightened as to what it will do to me when I can't even tolerate the 120mg without holding my stomach crying in the fetal position on the floor of the bathroom. I want to take this drug so bad, but I am so confused as to how I'll make it through these horrific side effects. My last dose was yesterday, and I am still in terrible pain today, I can't wait for it to stop. I am so concerned about the damage being done to my stomach from this drug, with the idea if I am in this much pain, what is it doing to my GI system? Ah! Sad. I really really really needed this to work and it was an epic fail. If it were level 5 pain, or even level 7 pain - I could probably hang in there, but this is level 10 and it's scary.

So...back to square one I guess, thinking I might go back to Rebif, although it was miserable, I never experienced pain like I have with the Tecfidera. Again, so sad about this, and reading what people are going through trying to adjust is disheartening.

Comments, Thoughts & Suggestions greatly appreciated!

Thank you ;)
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Re: Cannot tolerate BG12...so disappointed

Postby azmsgal » Fri Jul 19, 2013 2:36 pm

Wanted to give a quick update.

My last dose of BG12 was Tuesday 7/16/13 - I am still suffering the side effects, bad stomach cramping, vomiting and diarrhea. At this point, I am just trying to stay hydrated so I don't need IV fluids. I guess plenty of people have this reaction and Biogen Idec says the drug can take several days, possibly a week to come out of your system. So, for those that can't tolerate it, plan several days to recover.

Side note: Since I have had bad luck in the DMD world, I am meeting a doctor here in Scottsdale, AZ Monday to get a prescription for LDN - hopefully it works well for me as it has for so many others :wink:
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Re: Cannot tolerate BG12...so disappointed

Postby micheleinva » Wed Jul 24, 2013 7:58 pm

Azmsgal
I am sorry you are having such a hard time with Tecfidera.

I also did Rebif and the side effects were tough to deal with. I am now trying Tecfidera and had the exact same experience as you did -waking up with excruciating stomach pain and feeling like I was going to die.

I know everyone responds differently, but I was able to put a step by step plan into place that has completely eliminated my stomach pain and worked for me. If you want to read about it, I posed a new topic called "Get rid of Tecfidera Stomach Pain"

I wish you all the best with whatever you try again!
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Re: Cannot tolerate BG12...so disappointed

Postby azmsgal » Sun Jul 28, 2013 6:24 pm

Hi micheleinva

How are you feeling? Still doing good with the BG12?

Thank you kindly for your reply and thank you for your inspiring post on how to deal with the stomach pain. I am seriously considering trying the Tecfidera again, my only concern is that I had that crazy pain before I stepped up to the full dose. That said, the nuero is now giving me very crappy options with regard to treatment...saying that if nothing else works we will have to do Tysabri which...I am not horribly comfortable with. That, or IV steroids monthly, so I have been kind of sad. I really really am considering trying the BG12 again - I was so excited about it. I read and tried ladymac's regimen for my last 2 days on BG12 and still had bad pain, but it may have been to late, at first my doc told me no pepto or any over the counter things... just zolfran which stopped my throwing up, but didn't help the pain. Here's hoping that this go around with the right meds and enough food and water I will make it! I sincerely want to be able to take Tecfidera.. and get through those side effects without a trip to the hospital, I hope the force is with me lol. So again, thank you for your great post and suggestions, we are all in this together and every bit of info helps :smile: I'm feeling optimistic about trying again and have this great community of amazing people to thank for all the great tips and tricks.

Lots of <3 and many thanks :wink:
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Re: Cannot tolerate BG12...so disappointed

Postby Cchday » Sun Jul 28, 2013 6:59 pm

Good luck with the second time around. My nuro told me to take two pepto pills and Pepcid A/C and eat the food fat, carbs, protein. I am in my fourth week and I have a good day and then a bad day.
Today was like day one with the nausea and stomach pain. I am still going forward with the medicine for a few more weeks until I decide to quit or not. Everyday I am hoping my body will get use to this drug. I know that many people are doing well, so my hope is that we will also get use to this medicine soon, very soon.
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Re: Cannot tolerate BG12...so disappointed

Postby azmsgal » Sun Jul 28, 2013 10:33 pm

Hi Cchday,

I can totally sympathize with you! I know we all want to adjust, and for those that do easily - I couldn't be happier and I am jealous of you! Lol

I am wandering if previous GI issues have anything to do with how this drug is tolerated? I know it's new, but my thought is this...10 years ago, I was diagnosed with 2 ulcers; one gastric and one peptic. I took Prevacid for a couple years and began to naturally avoid the things that would irritate my tummy: certain alcoholic drinks, super spicy food (I love spicy food) etc.. For years, I have not had any issues with my stomach, Tecfidera brought the most discomfort I have felt since having those ulcers. I am wondering if there is any connection here. I think I am going to have my doc send me to a GI Specialist to see weather or not there is an ulcer and if so, I wonder if the BG12 just irritated it to no end or what. Maybe I can get back on Prevacid and call it a day?! Whew, that would be fabulous! I sincerely hope that we can all continue to learn from each-other in the never ending adventure of controlling our MS.

So, if anyone has had previous or existing stomach issues before starting BG12 - Please post and share your experience, maybe we can learn something valuable about how to better tolerate this med.

Stay strong everybody 8) and Cchday- let me know how it goes for you! Of course worst case, we can wait a bit longer and try this drug again after there's more information on it and how to handle the side effects if you are not reacting well.
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Re: Cannot tolerate BG12...so disappointed

Postby micheleinva » Mon Jul 29, 2013 5:13 am

Hi everyone.
Azmsgal---hang in there. I know it is so frustrating and confusing. I am sorry that you are going through this. It is tough. I think Cchday has a very good observation about the possibility of past GI issues making it more difficult to transition to Tecfidera. Have you had other issues in the past? That might be a good option to explore.

If I stick to the regimen designed by Ladymac, I am doing well regarding the stomach pain. But, if I deviate at all, it all comes back. So for me, this appears to be the magic formula that works. I feel very, very fortunate. I still feel bloated and have actually gained about 7 lbs. Believe me, I do not have 7 lbs to gain! The bloating is frustrating. None of my pants fit around the waist and dresses make me look pregnant. But, I really would take these minor inconveniences any day over the injections and side effects of Rebif, which for me were not good.

One last thing....and I am sorry if this is out of line in any way. Do you like your neurologist? I know it is a tough question. I know there are limited treatment options available and that his/her hands may be tied in terms of offering options. But, for me, the "little things" really do make a huge difference in how I cope with this disease. Things like the doc/nurse returning phone calls in a timely manner, making the time to see you, being open to discussing your side effects, etc .....this has all made my journey much easier. Have you ever thoughts about going to another neurologist or looking into a MS center? I am sorry if you have already posted about this....I am very new to this. Just a thought.

In the meantime, I want to echo Cchday's great advice--STAY STRONG. We are all here for you and in this together. :)
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Re: Cannot tolerate BG12...so disappointed

Postby Ash3 » Mon Jul 29, 2013 2:32 pm

Just a little input on the side effects of Tecfidera. I did great on the low dose had nothing, went up to the big dose and by the third day I thought I was dying. I called my MS Center nurse and she said the doctor said just take one a day for a week until my body got adjusted. Also, forgot to tell everyone my doctor told me I would be fine starting this perfect medicine for me and eat saltine crackers that was all she said. Had to threaten to speak to the nurse after the week of lowering the dose and finally got her and she told me to stop it and that I had no other options and to just make a doctor's appointment. Well needless to say I was furious and upset. So that is when I went to the Interent and found Ladymac's diet regiment. Guess what it works!!!!Also my Internist helped me with Zofran and Librax and tums,etc. So,I am going back to my old group of neuros and taking charge. I like a certain comfort zone and I am in charge of my care. I started Tecfidera on May15 and still have at times some cramping,gas,bloatiness and yucky feelings but my bloodwork was done in the 8th week and I go August 1 to neuro we shall see. I hope this helps. Ash3
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Re: Cannot tolerate BG12...so disappointed

Postby galadriel09 » Tue Jul 30, 2013 11:12 pm

I have bee taking Tecfidera for 2 weeks and 1 day now. I have been taking the full dose for 8 days. Although I tolerated the full dose for 4 days, I may give up because for the last 4 days I have either been vomiting or having diarrhea for the past 4 days. I am ready to cry tonight, I'm not sure what to do. My doctor told me to take pepcid, I already take dexilant every day (a ppi). I think I am going to email my neurologist the white flag and say "I surrender!" because although I want a better treatment for MS I also want to be able to go to work every day without running to the bathroom. I am also worried about eventually becoming dehydrated. I never had a problem with Copaxone like this.
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Re: Cannot tolerate BG12...so disappointed

Postby micheleinva » Wed Jul 31, 2013 8:40 pm

galadriel09-
So sorry to hear that you are having a hard time. Have you tried the diet and additional meds recommended by Ladymac? I was ready to quit until I read her post and followed the advice. My doc approved the nausea med and the OTC use. It took about 2 days of following the regimen for it to work 100%. I am pain free now.
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Re: Cannot tolerate BG12...so disappointed

Postby azmsgal » Thu Aug 01, 2013 5:29 pm

Hi everyone :mrgreen:

Thanks for all the great info.

Ash3 - I am so happy that you found a way to tolerate the side effects of BG12 and can stick with it. I am waiting for some tests to come back and will then consider trying it again. Your story gives me hope, and hopefully if I "gear up" with the right foods and meds and implement Ladymac's regimen day 1 - I will be okay and can adjust without too much pain. I am a little bit concerned that I had such a hard time tolerating the drug at the 120mg dose, which is why I am waiting on tests to make sure my stomach is okay. Here's hoping!

Galadriel09 - I know the pain and side effects are intense, and I'm so sorry you are having that experience. A lot of people had a tough time adjusting and used Ladymac's regimen to get through it. I know everyone is different, but the bottom line is, many people are having the stomach pain, some get it very severe like us. Obviously, the drug is hard on your GI system. Maybe try to get on a schedule with your Tecfidera, take it on a full stomach, ask for anti-nasea meds and definitely take them..Gas X helped me a little bit. Oh! And don't forget to drink lots of fluid (water is probably best) Pedialite is also good if you get dehydrated from all the throwing up and diarrhea. Honestly, I was so taken back by the side effects I stopped after the 6th day. But, I do know several people that have been able to get through the initial stages with BG12 and now, they are tolerating the drug very well. Ladymac's advice seems to be crucial while you are adjusting, I must say, it's inspiring to see how many people have been able to stay on this drug because of it! Of course, there are always going to be some people that just can't tolerate it and have to move on. I wish you all the best and please keep us posted on how you are feeling!
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Re: Cannot tolerate BG12...so disappointed

Postby cahaba » Sun Feb 16, 2014 1:15 pm

This is my first time to post here and I will join you in wishing all the best, hurray and congrats to all those of you who are perhaps in that ? proven 60% ? of people who experience only mild side effects from ingesting Tecfidera.
My experience after swallowing this torture pill completing the 1st week of 140 mg with no side effects and then 23 pills in all of 240 mg. was pure torture. After a few days of this 240 mg dosage I thought I was literally going to die. I kept on even though I was doubled over in upper GI pain, experiencing gastrointestinal acid reflux, something I have never experienced before in my many years, and vomiting after every tiny "meal" morning and evening. I finally groaned from the bathroom floor "I give up" .
I must be the in bottom level of the ?40%? of people who are having a very severe adverse reaction to this medication. And no I am not going to "stick it out. I am not going to let my neurologist talk me into messing with the dosage. I have lost 4 lbs in 8 days and he will have to come up with an alternative for me. I was on Interferon bet 1B for 19 years. I loved it. Unfortunately I have developed many injection site lipoatrophy.
Again I just wanted to present the facts, not intended as a "negative" but as my own personal experience in case g-d forbid someone else has gone through a similar hellish experience. This blog is a great place. I did try all the suggestions; the Zantac the Zofran, the chewable tums, taking "food" with Tecfidera, staying hydrated. NOTHING helped me. I really hope that I am a very unique case and that the majority of people can tolerate Tecfidera well!!
Again wishing everyone the very best. NEVER give up hope![color=#0040FF]
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Re: Cannot tolerate BG12...so disappointed

Postby NHE » Sun Feb 16, 2014 11:20 pm

Thanks for sharing your experience with Tecfidera. I'm sorry to hear that it put you through such misery. You might want to consider filing an adverse event report with the FDA. This will help people learn more about the drug especially considering that it's still fairly new.

http://www.fda.gov/Drugs/GuidanceCompli ... efault.htm

By the way, I was wondering if you have considered trying Avonex? Since it's an IM injection, it doesn't have the problems with skin reactions like the SC delivered Ifn-betas do.
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