How I got rid of Tecfidera stomach pain!

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

How I got rid of Tecfidera stomach pain!

Postby micheleinva » Wed Jul 24, 2013 7:30 pm

This is my very first post ever. I stumbled onto this site through a google search, looking for answers to stomach pain and Tecfidera. The info on the board ELIMINATED MY STOMACH PAIN. I wanted to write and share for everyone out there in pain and ready to give up. PLEASE READ ABOUT MY EXPERIENCE. I hope it helps someone.

Quick synopsis....been diagnosed with RRMS for 3.5 years. Been doing Rebif but stopped because I simply could not handle the flu side effects and needles. Every day after an injection I felt terrible with migraines, etc. Started Tecfidera in early July. I am on week 3.

In weeks 1 and 2, I experienced flushing, itching, but no GI issues. I was excited. At the end of week 2, I began to experience VERY severe stomach issues...diarrhea, cramping, bloating, extreme stomach pain, DEBILITATING nausea and repeated vomiting. The pain was so severe it would wake me up in the middle of the night. Nothing I seemed to do helped. I was unable to work, in bed all day literally writhing in pain. The only advice my neurologist gave was to eat food and keep trying to stay with it for a month. Same with the Tecfidera nurses. I literally felt like I was going to die.

Then I found lots of helpful info on this site, particularly Ladymac's recommendations. LIFE CHANGING. If you haven't read her post yet, READ IT RIGHT NOW. I think this is the link:
tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

After reading her posts, I called my neuro and requested an anti-nausea med and asked for permission to take Zantac. I have never had stomach issues before, and knew nothing about acid reflux. My stomach pain was sharp, severe and I felt like I had a tennis ball wedged underneath the left side of my rib cage. The combo of my doc's prescription for anti-nausea meds and the Zantac worked like a charm. Other than an occasional "twinge", MY STOMACH ISSUES ARE RESOLVED.

In a nutshell, this is what worked for me:

1) One hour before breakfast I take my prescription anti-nausea drug (Ondadsetron tablet, 4 mg) and OTC Zantac (Zantac 150, cool mint)
2) About 45 min later, sip/drink half a cup of hot tea for 5-10 min to get my body ready to eat (I never eat breakfast, so my body does not want to eat this early)
3) Eat breakfast (protein, carb, fat--scrambled egg with cheese, bacon on muffin or frozen meal like Weight Watcher's Egg Quesadilla)
4) Every hour until lunch eat 1 saltine cracker to keep something in stomach. Yes, I know you aren't hungry and are nauseous, but YOU HAVE TO EAT
5) At lunch, I eat some protein and soup or salad. My protein can be some grilled chicken, beef, 2 rolls of lunchmeat, etc
6) Continue to eat 1 saltine every hour until dinner
7) One hour before dinner, take my anti-nausea med and OTC Zantac.
8) Eat half of dinner, take pill, eat other half. Dinner must include protein, fat, starch/carb, etc. Tonight it was grilled chicken, a very small salad and some potatoes and cheese (another WW micro meal-used half as my side dish)
9) Do not lay down for at least 2 hours
10) DRINK WATER ALL DAY. I am drinking 10-12 large glasses. I have a tumbler with a straw and take it with me in the car, to work, while running errands, etc. This is really crucial

The neuro is very pleased. I am elated. I was ready to give up. Ladymac's advice saved the day. So, if you are in pain and reading this, please try her ideas and stick with them EXACTLY for at least 3 days. I hope you have as much success as I have had. It literally was a night and day difference. To everyone on the board who took the time to post tips and advice, THANK YOU!
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Re: How I got rid of Tecfidera stomach pain!

Postby Ash3 » Fri Jul 26, 2013 4:16 pm

Yea! Ladymac saved me as well. Going into Month 3 so far so good. You go girl. Ash3
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Re: How I got rid of Tecfidera stomach pain!

Postby micheleinva » Sat Jul 27, 2013 4:06 am

Ash3,
Glad to know that you are still having success and it is working. Since you are in month 3, have you felt any changes in you feel generally? I am noticing a small increase in my stamina. Either it is the Tecfidera or I am just realizing how the Rebif really affected me with the flu like stuff.
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Re: How I got rid of Tecfidera stomach pain!

Postby Ash3 » Sat Jul 27, 2013 10:06 am

micheleinva, I have noticed more energy because our brains are telling us gogogo but our bodies are still adjusting. I still rest everyday and I also still try to keep something on my stomach at all times. However, I live in the South and it has been either hotter than you know what or raining. So that has been a nightmare. I go to the neuro on the 1st of August and apparently my bloodwork is good when I went for 8 week cbc. I still have stomach discomfort but it has gotten so much better. I was off medication for 6 months prior to starting Tecfidera so I am slowly gaining weight back and will exercise down the road. Ash3
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Re: How I got rid of Tecfidera stomach pain!

Postby micheleinva » Sun Jul 28, 2013 3:59 am

Ash3,
Thanks for the reminder to rest! I feel so excited to have more energy, but I need to remember to ease into it slowly. Aside from the stomach issues (THANK YOU LADYMAC!) I feel so much better overall. I am a few days shy from completing my first month, but the difference is really amazing. The hardest thing for me is to eat that breakfast every morning. But, after those stomach pains, I will force myself to eat if it continues to help!

Do you take any additional meds one hour before the Tecfidera? I am taking an anti-nausea pill and some Zantac. Just wondering if you are still taking these meds in month 3.
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Re: How I got rid of Tecfidera stomach pain!

Postby Ladymac » Sun Jul 28, 2013 7:27 am

Hi Micheleinva & Ash3!

Ash3 is absolutely right, more energy but man oh man my aching back, legs, arms that are so decrepit from being out of shape! But cognitively, WOW what a difference. I have seen people I haven't seen since before I started Tecfidera and the first thing they say is WOW you look really good. Your face and eyes are brighter, you are smiling, and they tell me how awful my memory and cognition was and they see a huge difference. That's nice, I like that. :-D

I am learning that there is a difference from being "out of shape" and the muscle loss, etc., and it is going to take time. Therefore I have to pace myself and know that I have to stop well before my body screams STOP! The brain is willing, but the body weak :lol:

Just started month #4 on the meds. I am now able to do a lighter breakfast and lunch. Evening meal is now salad and a piece of chicken, pork, steak, hamburger, etc. Adding the salad in is a huge change for me.

Am adding fruit and yogurt in the afternoon. No problem. AWESOME!!!!

So this week I have major blood work being done tomorrow (Monday) checking Lymphocytes, CBC, Liver and Kidney profile as well as having my Bone Density Scan done. I will have those results by the end of the week and will take them to my big appointment for my MRI of brain and 3 areas of spine with and without contrast with appointment of my MS Specialist Neuro to go over all results and read the MRI against last years end of next week. I am really excited to see how things are because I am feeling great.

Thanks to both of you for your support and kudos to you two as well.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: How I got rid of Tecfidera stomach pain!

Postby Ash3 » Sun Jul 28, 2013 12:41 pm

Yea to everybody! No I am not taking anything now except the regular stuff I was on before starting Tecfidera. The only thing I have noticed is midafternoon I still get a little crampy,gassy, pain but I usually eat something light and drink a Gatorade. Keep at it. Oh by the way good to see Ladymac still watching out for us. I will be in touch after your appointments or vice versa. I go to neuro on August1. Ash3
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Re: How I got rid of Tecfidera stomach pain!

Postby msviva » Mon Aug 26, 2013 7:57 pm

Hi micheleinva,
First of all, thank you for your tips. I experienced all the Tecfidera side effects that you described and am following your protocol. It's not 100% better but it's much improved.
I wanted to see how things have been for you in the last month? Is it true that these side effects go away or significantly improve after the first month? I am in currently in week 3.
Thanks in advance.
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Re: How I got rid of Tecfidera stomach pain!

Postby Ladymac » Tue Aug 27, 2013 6:21 am

Hi msviva,

I am in the 4th month and haven't had any side effects for over a month. Please be patient and you hopefully will start seeing and feeling the improvements many of us have had.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: How I got rid of Tecfidera stomach pain!

Postby msviva » Tue Aug 27, 2013 7:38 am

Thank you, Ladymac. I'm very happy to hear that about you and am hoping I will be the same. This gives me strength to persevere.
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Re: How I got rid of Tecfidera stomach pain!

Postby micheleinva » Fri Aug 30, 2013 7:59 pm

Hi--I have been on Tecfidera for about 2 months now and it is going great. If I follow the suggestions, I do not have any stomach pain. I no longer have to take Zofran or the acid refluc meds. I simply take Tecfidera with my meal. The only side effect I experience occasionally (1 a week or so) are the light hives and red face. I recognize when it is happening and pop a Benadryl pill. That takes care of it completely.

I went to the neuro yesterday for a CBC and will let you all know what the results are.

My word of advice is to stick to the diet regimen, drink 8-12 glasses of water a day and do it for 30-45 days before you give up, if you can. For me, the difference has been amazing and I feel like a completely different person than I felt like when I was on Rebif. The migraines, fatigue and general flu like feelings were constant with Rebif. This has been a life changing drug for me.
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Re: How I got rid of Tecfidera stomach pain!

Postby msviva » Fri Aug 30, 2013 9:14 pm

Hi micheleinva,
Thanks for the update. It is wonderful too hear your good news.
Oh no. I'm not giving up. I've been following your protocol and feel much better already. Still not perfect but a huge improvement. I'm in week 4 now and am feeling very optimistic. I don't know what i would have done had i not run into your post. Thanks a million.
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