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Thank you for all the helpful info you've been providing, Ladymac. I am also taking the Zantac an hour before the tecfidera/meals. I actually didn't expect it to work, since my understanding is that the Tecfidera is producing the extra troubling acid, not my stomach. Maybe reducing my stomach acid just takes the edge off? I may very well have this all wrong! Either way, I'm definitely going to try to drop Zantac as soon as I can! Good luck with dropping your evening Prevacid.
FYI- I tried a couple of other things so far to try to replace Zantac. Rolaids helped a tiny bit, but I still got sick. I also tried baking soda water, which also helped a little bit, but it's gross. I think Zantac along with Ladymac's diet plan, complete with GERD-friendly food, is what's working best for me. I have stopped using the aspirin, because my neuro wasn't a fan, and the only difference I really notice is that I have more flushing now. I guess everyone just needs to try different things to see what works, and remember keep your doctor in the loop!
You go girl! Zantac is a different category than the proton pump inhibitors, it is a strong antacid. The aspirin that my Neuro has everyone taking was to drop our daily heart asprin 81mg and replace with full enteric coated aspirin. He had anyone that could take aspirin take one even when we started other meds like Avonex or Copaxone as well. I just take the morning regular aspirin now since age it is a recommendation for the heart anyways.
Hope you continue to do well.
Blessings,
Blessings,
Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
I just found your entries! I am also being treated at the MS Center of Atlanta but received no patient education or support for my
problems with Tecfidera. In fact, I have never met or spoken with anyone with MS! Is there a way to contact you privately? Would love to chat if you have the energy or the time.
I dedicated my entire career to patient education and advocacy as a Registered Nurse consultant. One year ago, I was diagnosed with MS and
have felt like I was swimming upstream alone.
Hi, I have been taking tecfidera since April and only once have I experienced the stomach cramping. I have noticed that I am eating ice on a more regular basis and believe that is due to the flushing. My boyfriend recently started taking it and experiences major flushing, loopy light head feelings, and fatigue. This started when he started taking the 240 mg. I try to help him through it but his experience with it so far was nothing like mine. I don't usually eat a huge breakfast when taking the pill, maybe a muffin or a breakfast sandwich and for dinner I eat salads. I think everyone's dietary need is different and what may work for one may not work for someone else, but at least you should try people's suggestions and tweek it to your liking.
My most bothersome symptom on Tecfidera is constipation. I feel like an old issue is being reintroduced. After being as close to normal as I can get for over a year, and no laxatives, it's like old-time MS is back. I 'think' it will get better, but I want it NOW, and I don't like this a bit.
I am a little late to this thread, but thought I'd share my experiences anyway . . .
I got in bed one night recently after finishing up in the bathroom, and said to my husband, "I didn't hardly flush at all this morning, and I didn't flush tonight at all!" He looked at me like I was crazy -- why tell him that? I realized what he thought and cracked up -- he had a different type of flushing in mind . . . hope that makes someone laugh!
So, that is my issue with Tecfidera now - these intense itchy rather painful unpredictable flushing episodes. I never know when they'll strike. They don't last too long, maybe 20 minutes. But I did notice that jalepenos bring on a serious almost immediate flush. After reading through this thread, I have another clue as to what is causing the flushing -- acidic foods. I had a very bad flush at our xmas lunch yesterday (we celebrated with my family day after) and I had eaten ham, a little bfast casserole and some pineapple for breakfast before taking it. i thought that would be plenty of fat so I was surprised to get a flush. Up until now, i have been focused on eating some fat with it (even my doc suggested this), and it has mostly worked. Even some coconut oil in my oatmeal and fruit has been okay. I was also puzzled when I had horrible flushing at thanksgiving, but I had some wine so maybe that was the problem.
I also have GERD and take medication for that, but I take it right before bed. I tried mornings for a while but it did not work as well for me. I take Dexilant, and recently tried switching back to Nexium (which I was on for years), and no go - I had horrible heartburn the next day. I recall reading something about taking aspirin to reduce flushing, but I didn't think you could take even coated acid with GERD. I'm pretty afraid to try . . . Given my GERD issues, you all would think I avoid more acidic foods but I don't worry about it for the most part because I have tried and that didn't work . . . there are just a few things I absolutely can't have -- that Starbucks VIa instant coffee or any regular coffee in the afternoon other than a latte (I do drink two cups of coffee in the mornings - I cannot give that up!), and I cannot drink red wine. Anyway, as much as I love tomatoes, spicy food, etc., I will avoid these at bfast and lunch for now on and see if that helps with the flushing.
Sorry this post is growing long, but I did want to share my GI/tecfidera experience as some of the posts here were very similar to what I experienced. I actually quit on about day 12 of taking the normal dosage (120 mg 2x day for a week, then 240 2x a day). I had horrible GI issues to the point of being unable to eat, and having to take Bentyl to relax my stomach. I was considering the ER - the cramps were so awful. I decided I could not deal with being that sick in the middle of October. I told the doc I would try again in January when things were slower but he suggested I just titrate more slowly. So, I took one 120 mg per day for 4 weeks in November and then moved up to 2 120s per day for the next 4 weeks. I have about a week to go on that, and then will take one 120 mg and one 240 mg for four weeks, and then go full-dose. With this dosage I initially had some bloating/belching but nothing too severe and now I have almost no stomach issues at all with it. And the flushing has just been really erratic.
I am on day 4, and feeling pretty crummy right now, though yesterday was good..go figure.
I had terrible stomach pain after day 1, but then took an OTC med, available at Vitamin Shoppe called CALM. I take opiod pain meds so wrestle with constipation from time to time. CALM takes care of it within a day. It's a magnesium formulation that 'relaxes' the GI tract, allowing the bowel movement to pass along with the very painful gas. It truly is amazing how much air you can hold, and it HURTS!
I too wonder what it is that the aspirin does as part of your regimen Ladymac, I would definitely take it, however have an allergy to aspirin that results in angioneurotic edema. Very scary.
Today I'm very dizzy, so I'm not moving around too much, but even the couch is moving! haha. Don'tcha wish we could all sleep though the side effects?! Might develop bedsores after staying asleep for the better part of a month.
I have been so grateful that my husband found this website and conversation. I started week 3 of Tecfidera on Monday and have had such a similar experience of so many of you. I think it's better that I discovered our commonalities after having the unanticipated flood of abdominal issues after 2 weeks with no side effects....otherwise I might wonder if some of it was psychosomatic. Yesterday morning I was ready to quit, but the information I read and have implemented has already made a world of difference! I had been taking my second pill before bed rather than with dinner, thinking I would escape side effects that way--instead, I had 3 different nights with 2-hour episodes of severe abdominal pain and nausea 2 hours after going to sleep. Taking meds with dinner has done the trick. I have also used either pepto or gaviscon WITH beano tablets with both meals that I take the Tecfidera, and side effects have resolved a tremendous amount. I have taken Zofran when nausea gets bad, and it totally resolves any remaining discomfort. The abdominal pain has improved with antacids, aspirin, and beano. I started taking prilosec for good measure because of aspirin.
Someone had asked about "why the aspirin"--my husband is a doctor and he said that there is a chemical in it that actually helps the intestines--it is part of the regimen given to people with ulcerative colitis. Ironic, because I know it can really tear up your stomach lining...that's why I take the prevacid with it. I will see my neurologist soon and will ask about whether or not taking antacids like pepto or gaviscon inhibit the absorption and effectiveness of Tecfidera...although maybe the manufacturer would know better? I bought gaviscon today because I know pepto has the same chemical in it that aspirin does, and I don't want to double up on things that I shouldn't, although my husband doesn't think it's a problem. Also--pepto and zofran both slow down large intestines, and I don't want to create any problems with constipation when for now that's not a problem.
Anyway--thanks for contributions on this forum. Like all of you I am really hopeful that this drug adds to quality of life rather than taking it away. Sharing your experience has helped me immensely!!
This conversation feed may be too old for anyone to read, but I just wanted to follow up and say I called a nurse at MS Active Source to ask if antacids inhibit absorption of Tecfidera. She said they do NOT. Good news--it means we can still enjoy the benefits of both Tecfidera AND the antacids.
I have been on Tecfidera since October .my neuro told me to eat a meal 1/2 hour before taking it. To coat the digestive track. Have not had any issues. I di have some of the flushing. Not I am having hot flashes and sweats. Has anyone else had this?
I started Tecfidera yesterday. I was using Ladymac's protocol right from the beginning. After the first 120mg dose I had some tummy rumbling and a big bowel movement. That was ok because I tend to constipation. After the second dose with dinner I went to bed early, not feeling well. I had nausea but no vomiting and abdominal cramping but no bowel movements. I was completely miserable! I tried to get up around 4am to make ginger tea and eat some crackers but I was too sick to walk. I did get a couple of hours sleep on the couch, sitting up.
I'm ready to quit already. I don't see how I can tolerate this for a month, much less what I hear others tolerating.
I have read that the FDA doesn’t list any contraindications for Tecfidera, stating that, I would think it would be alright to take Pepto. I have, so I hope there are no diminishing effects.
Good luck to everyone! I am on my 3rd week...still hoping to stabilize
Hi All,
I was dx with RRMS in 2003. Have not taken any meds except during a flare (have only had 3 since being dx), and have never taken maintenence meds (mild MS, plus I was trying to get pregnant at the time). Even tho I feel fine, my recent MRI shows more lesions. Now my dr. wants me to start taking Tecfidera, so I am educating myself on the side effects.
I am wondering if people continue to work during these side effects? Some sound pretty bad, and wondering how you handle working, or are people on disability?
