Side effects

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

Re: Side effects

Postby pat7188 » Fri May 16, 2014 9:52 am

hello hope this is of some help as every one reacts differently. I have been home from the hospital 2 days after being there 6 days I took tec for 18 days and the severe pain and diarrea and feeling as if I was going to pass out put me on the surgical floor as a ct showed the webbing and a slight twist in small bowel that fixed it self and high white cells , high anion gap metabolic and a ms flare up like I've never seen that was a few of the effects I met with it . when I get on my feet I will be back on rebif . Gratefully
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Re: Side effects

Postby Pamipants » Tue May 20, 2014 2:12 am

Hi everybody - today is day 1 of Tecfidera - a day i have been dreading for a while - anyway, i have comfort in knowing there are like-minded MS sufferers out there and will post updates on how i feel/side effects and anything else that someone may find useful - i know i have found this site extremely resourceful in the build up to today....fingers crossed the symptoms are mild - but really, what are the chances of that??
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Re: Side effects

Postby barbarakwoodward » Fri May 23, 2014 3:41 pm

I had no real side effects with Avonex. My strategy was to take it in the evening, around 7-7:30, with 2 ibuprofen before. I started Tecfidera this past Sunday and had only mild flushing the first day, but on Thursday, the fifth day, I started getting ce, feint weak and tired, with a headache. I don't know if this is a flu, a relapse or a reaction to the med.
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Re: Side effects

Postby MelG » Wed Aug 20, 2014 1:07 pm

I've been doing Tecfidera for about 2 weeks. In my past, I did Avonex for a year and a half. I had to stop Avonex b/c of side effects. The Tecfidera side effects for me are amusing, by comparison. I've only had the flushing and a little itching.

I want to address the conversation about the actual pills. These are time release pills. The directions say 2 pills per day, with OR without food. With my HMO, the pharmacist actually talks with us before starting new drugs. Mine advised me to have food before or even when I take the pill because it will reduce the side effects. For me, it has been excellent advice.

Given that these are designed to be released over many hours, and the dose is probably much higher than we need, I don't worry about the actual timing of the pills being exactly 12 hrs apart. We have enough crap to deal with, without having to fret over the precise-ness of the dosing and if we have an empty enough stomach. We don't need to have an empty stomach at all. So don't add more stress to your life than you have to.

At least for me, this is a picnic compared to taking Avonex, Copaxone, or any version of steroids. I wish everybody the best and hope you can find a way to enjoy the freedom we have with time of dose and being allowed to have a full belly with the pill.
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Re: Side effects

Postby jllandryusa » Wed Aug 20, 2014 5:43 pm

Hi all,

I have been on Tecfidera exactly 6 weeks. For 2 days no side effects. Starting day 3 I had horribly painful bloating, gassy stomach & terrible nausea. I had all the tips & tricks down & was doing everything right. Maybe the end of week 2 I was at the end of my rope & would have quit it if my sister-a nurse-hadn't talked me into riding it out. Coincidently the following Mon there was a post on this very board 'A year on Tecfidera'. It was the first positive post I'd seen from a woman who fought thru the side effects & was thrilled that she did so, feeling great, improved mri etc. That was exactly what I needed to soldier on, & I did. Week 3 was more of the same, horrible pain from bloating & nausea. I switched to taking it BETWEEN meals & that seemed to help somewhat. Mind you I was still on the strict schedule, eat 2hrs before, aspirin 1hr before & Zantac, Zofran, anti-gas 3x a day. At the start of week 4 I pretty much had it with the whole 'schedule' involved in taking this med! I had gained weight & was taking like 20 pills to ward off side effects, rediculous!! I decided to hell with that & started taking it with a small glass of milk (was still taking Zantac & gasx w Zofran as needed). Week 4 was great! Very few side effects, mind you I did have the occasional 'light/hot' head as I experienced it but I was fine w that. Over the past couple weeks I've given up the milk, Zantac & Zofran. I still take an aspirin an hour before (am only). I take it on an empty stomach as I've never been one to eat in the morning. I am back to my normal eating schedule & do nothing for taking Tecfidera but take it. My side effects are gone & I can FINALLY say it's easy to just take 2 pills a day, feeling hopeful that this is the medicine. Just know that every person is different, with different side effects & experiences. I just wanted to share my personal in hopes that it helps someone. Good luck to you all & may Tecfidera be the amazingly effective DMT people & Drs hope it is!!
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Re: Side effects

Postby ColoradoEmpress » Thu Sep 11, 2014 10:42 am

Hi jllandryusa, how have you been doing? I'm curious if you are still feeling good after passing the 6 week mark.

I originally started Tecfidera in May but in June had weight loss surgery so stopped the meds until I was 8 weeks post-op and back to eating solid foods. I've now been back on the Tecfidera for 6 weeks and I'm really struggling: cramping, severe nausea, vomiting, etc. While the symptoms weren't horrible during the first round, they are really kicking me this time. I've followed the suggestions on diet but I have the added complication of being unable to eat more than about 1/4 -1/2 cup of food in total at any one time. For the limited quantity I can eat, my diet is very protein rich and protein is the first thing I eat at every meal.

I'm just wondering if its worth it to keep struggling through this. At present I take two doses every other day with one dose on the other days. I'm afraid to take the double dose two days in a row for fear of what it will do to me! Would you say 6-8 weeks is the "magic" length of time to hold out? I was on Avonex for nearly 10 years, then changed to Rebif and was able to tolerate the drugs pretty well except for the skin issues at the injection site which is why the doc decided it was time to get off the injections and try something new.

thanks for any advise you can offer!
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Re: Side effects

Postby SchroedingersCat » Wed Sep 17, 2014 5:24 pm

I started Tecfidera on Sept 6th. Made the mistake of taking the pill a half hour after eating breakfast and not taking aspirin. Turned into an itchy lobster. Took the aspirin about 30 mins after the side effects started and within 10 minutes, they were starting to subside.

Changed to taking aspirin and hour before Tecfidera. Also take Tecfidera in the middle of the meal instead of afterwards (thanks to a great thread on this Board). Worked wonders.

The side effects are usually very mild but the starting time is very erratic. Sometimes it starts a couple of hours later. Sometimes 4 hours later. Once, it was over 6 hours later. Very strange but since the efffects are mild, it is not a big deal. I have been able to sleep through it for the night time dose, which is a relief, since I get up at 5:00 for Work.

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Re: Side effects

Postby emmiller » Mon Oct 06, 2014 12:38 pm

I am on day 4 of the starter dose. No side effects so far, thank goodness. I have not been on anything for 3 years as I could not stomach the injections so I am very glad there is a pill. Hoping that I will continue with no SE once I start the higher dose
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Re: Side effects

Postby kengriff » Tue Oct 07, 2014 2:14 am

I had previous experience of stomach pain . whenever,I ate something poisonous, I attacked by the stomach pain. But I don't know that is it the side effects of any drugs.
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Re: Side effects

Postby SeaNag » Mon Nov 10, 2014 8:34 am

I'm so glad to read these threads and get some advice on symptom management. I was diagnosed a year and a half ago (2 years since my first symptoms) and started Tecfidera almost 4 weeks ago. Took the recommended first week treatment then titrated up to the 2 caps twice daily for almost three weeks now. Just this past week I have started to get symptoms though compared to some people they are mild mostly. Strangely with my morning dose I get the flushing- anywhere from 3 to 6 hours after taking the dose - and turn bright red like I've been left out in the sun too long, but it doesn't happen with the nightly dose. That only lasts half an hour or so and isn't a big deal. More problematic is the new stomach pain which can be severe. It can occur anywhere from immediately after taking the dose to as many as 6 hours after. I have tried eating and drinking any combination of things and nothing has proved effective. Zantac is definitely an option which I will try if this gets any worse. The question I have for the board is, does anyone know what exactly causes the stomach pain? Is it an active erosion of stomach lining or a temporary irritation/inflammation? I know taking NSAIDS can cause permanent damage to your GI tract and am worried that this could do same. Am curious to know what others have heard. Cheers!
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Re: Side effects

Postby NHE » Mon Nov 10, 2014 1:53 pm

SeaNag wrote:The question I have for the board is, does anyone know what exactly causes the stomach pain? Is it an active erosion of stomach lining or a temporary irritation/inflammation?

Welcome to ThisIsMS. That's a great question. However, I don't know the answer. It would be interesting to see some data from people who have been on Tecfidera for a while and have had endoscopies. I would have thought that such information would have been part of the safety trials for Tecfidera. I suspect that the stomach pain is due to dimethylfumarate being an oxidizing agent against thiol groups such as those found in the amino acid cysteine and in glutathione. Dimethylfumarate used to be used in leather products such as shoes and couches exported to the EU from China as it acts as an antifungal agent. However, this use has been banned since 2009 as people were getting skin rashes.

This baby was burned red raw by a sofa giving off toxic fumes. As our investigation reveals, there are hundreds of other victims 21st June 2008
http://www.dailymail.co.uk/femail/artic ... ctims.html

EU ban on dimethylfumarate (DMF) in consumer products such as sofas and shoes - briefing 29 January 2009
http://www.eubusiness.com/topics/consumer/dmf-guide/
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