Side effects

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

Re: Side effects

Postby ralford » Thu Aug 01, 2013 6:37 pm

Hello,
I found this board searching possible side affects of Tecfidera. I am about 10 days into the the upraded 240 mg dose and have been experiencing just the watery diarrea for about the past 4 days straight and one night of stomach pains that woke me up from my sleep. I experienced the red flushin of my skin only on the first day of the small dose of 120 mg treatment. Hopefully this watery stool goes away soon, so far this is worse than the side affects I had with the injectable treatments Beta-seron I took for 9 years.

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Re: Side effects

Postby Ladymac » Fri Aug 02, 2013 6:22 am

Hi Ricky,

Please check out a POST that I wrote called "Tecfidera How to minimize or Eliminate Side Effects" on this board. It should give you some tips that has helped many of us with the diet you may want to try while taking the Tecfidera and the timing of taking your meds. tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby Ladymac » Fri Aug 02, 2013 6:25 am

Hi tckarchi,

Please check out my post on this site with some tips that may solve some of the issues. tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html

Good luck,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby findingree » Sun Aug 04, 2013 4:21 pm

I am on day 13 of treatment. I have had a very watery diarrhea and exceptionally bad nausea and stomach pain for at least the last 4 days. I can't hardly eat anything. I have had times of feeling internally hot but my skin has not flushed red. and there have been a few times that I have had goosebumps or chills. bottom line is I have been feeling really really bad for the last 4 days. the side effects just seemed milder the first eight or nine days and then suddenly worse.
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Re: Side effects

Postby Ladymac » Mon Aug 05, 2013 8:18 am

Sorry findingree about how you are feeling.

Please check out this topic on this site and it may give you relief: tecfidera-bg-12-dimethyl-fumarate-f52/topic22462.html
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby findingree » Mon Aug 05, 2013 10:12 am

Thanks, ladymac. i did & tried it at breakfast this morning. i am seeing my neuro this afternoon and am going to ask him for something to help with the nausea. pepto just isnt quite doing it. Thanks for all the tips! I am going to try them all. :)
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Re: Side effects

Postby kiwi6792 » Tue Aug 06, 2013 7:40 am

I have been on tecfidera for a few weeks now and I had to stop taking it because the stomach pain was unbearable......I started taking it again this morning because I do not want to go back to weekly shots so I am trying to power through....any tips/suggestions on how to make it better are greatly appreciated!!
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Re: Side effects

Postby Aud88 » Tue Aug 06, 2013 11:36 am

I started Tecfidera after 2 1/2 years and Betaseron. I was never able to take more than 1/2 dose of the Betaseron because I felt very drugged, tired and feverish after taking. In addition the increase in body temp seemed to cause Psuedo MS symptoms, so I never knew what was going on.

My first time taking Tec, I had mild flushing, mild gastro just that day. When I increased the dose, it was the same, just the first day. I looked in the mirror feeling warm, and my face was quite red, so I thought ok, this is flushing. Since then, my side effects are were mild.

I am now 3 1/2 months on the drug and have some scary MS symptoms going on. First off, I did have an exacerbation prior to going on the drug in combination with an ovarian cyst, allergies and a sinus infection. Back to now. I have felt a bit off some days. Kind of off balance in my head, but not necessarily noticeable to others, various areas in legs and feet tingling. All subside within the day or sooner. Then a couple of times I became very hot, almost sweating, and then very cold, but had no fever. This was accompanied by shaky hands and body. This also went away within an hour or so?

A few nights ago, while tired and out to eat, I felt like my swallowing was not normal. My mouth became sweater like inside, as well as my teeth and tongue. I was panicking wondering if it was a food allergy or MS? My husband took me to the ER, which was another story in itself. Lets just say, over three hours of waiting, no blood or urine tests done, and by the time the Dr. Finally came in I felt a little better on my own. He diagnosed as a food allergy, gave me , Benedryl, prednisone, and something else. As a fellow Mser you all know how bad exhaustion can be and I was there. I could not sleep in there waiting for Dr. To release me and walked out with my husband as I was what I call scary tired by 2:00 a.m. Will need a new plan for emergencies!

Anyway, I slept in long the next morning and felt ok the next day. I have an appt scheduled with an allergist, and am trying not to trigger anything, but two days after my ER visit, I felt off again. Sore throat am, took airborne and it went away, but could have been acid reflux. Tired...yes, tingly...yes, off balance in my head...yes. But at night after changing positions, I felt the room start to turn, which I grabbed the walls and stopped ( I have gotten good at this, dizzy spells since age 7). It happened twice whenever I tilted my head, so last night I slept upright. Today, still very bobble headed and a bit weaky, tingly. Not sure if this is drug reaction or MS or the fact that I have a new 4 cm cyst, or bad seasonal allergies, drainage etc. I also take synthroid for Hypothyrodism.

I know that is a lot to decode. I am so tired of trying to have a Dr. Look at all of my issues and make a total plan for my health. I am 43, thin, look healthy. I was diagnosed in 2004. I also have tried diet and nutrition, which I think is key, but not sure what is the right cocktail. In general, I do the low fat Swank approach with fruits and veggies, Vit D3, but perhaps there is a food allergy involved?

Anyone else experience so much weirdness on the new drug, or is this more than likely something else?
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Re: Side effects

Postby stephy651 » Wed Aug 07, 2013 8:24 pm

I am in my second month of Tecfidera.

I needed an annual OB/GYN appointment yesterday- set up months ago. During the exam, when she pushed on my stomach- I told her it hurt under my ribs. She ordered an ultra sound- that I did this morning. I don't have the results on this yet.

I did happen to get the blood work results though. My baseline ALT was 26 on May 29, yesterday's level was 52. I attribute this to this drug change.

I wake up with a sore throat as well, my airway felt like it was narrowing. I was nervous about getting enough oxygen today.

I have gained 8 lbs. since June 27. I never gained that much weight when I was pregnant. I don't know how I gained weight, I've felt crappy all summer. My Dr. had said to eat when I take a dose.

I am seriously thinking of going off of this. I know I'll never go back to daily shots though. I have run out of places to shoot, after 12 years of injections. Is anyone else still feeling crappy after being on this for more than a month?
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Re: Side effects

Postby Aud88 » Thu Aug 08, 2013 7:15 am

Stephy651- I will say this as another poster mentioned, it could be something else and not MS or the drug. For instance, the pain you had at the OB appt. before I started Tec I had back pain, leg tingling and had a constant urge to go to the bathroom. I was sure it was my MS getting worse. My Neuro ordered anMRI of my back and a CT of my ab and found no active MS, but rather a bulged disk in my back and ovariation cysts. Both of these could have caused my problems. I now do therapy stretches for my back, and well one cyst is gone, but I have another so we will see, but don't worry yet. More and more also, I am thinking my dizziness lately is different than MS and may be allergies. I had a great day yesterday and then when pressing on my sinuses had a lot of drainage and soon after that room tilting feeling when I leaned my head back.

You may be right that the blood levels are med related. I am not sure about the weight gain though? I have lost weight since I am trying to eat healthier. I try to follow many of the guidelines of the Swank MS diet, but sometimes cheat. It is a balancing act. Since I also have Hypothyrodism, I have to really balance everything so as not to gain from that. The gain does not seem like the drug, maybe more of an imbalance (hormones?). I did wake up with a sore throat one morning also and quickly took an Airborne. It went away and I assumed it was acid reflux, but then had the scary fuzzy mouth and tight throat that evening at dinner. You should do what my Neuro suggested and write down for a few days what is going on and what you were doing when it happened. It could be a virus, hormones, allergies or something else. Log in all symptoms, check your thyroid if you have any more of those symptoms in addition to the weight gain. Try ruling out those things before quitting the Tec. I agree, after 4 1/2 years in shots, I am feeling like there is nowhere else to poke and tired of fevers that cause MS pseudo symptoms!

Take care, hope your findings are encouraging!
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Re: Side effects

Postby joesoldlady » Thu Aug 08, 2013 1:29 pm

I just wanted to provide an update I came to this site about two months ago because my bf was so horridly sick from Tecfidera the stomach pain was so bad I was scared for him. I was so thankful to find this site and listened to all of the recommendations on diet. I am glad to say he is better, yeah no more horrible stomach pains. He still gets a bit nauseous when he does not eat right or just because? Herbs help this SE the most. To me I think some of the MS symptoms have gotten worse but he does not want to give up and compared to all of the other horrible meds he has had to endure this he feels this is the best drug. Just hoping to give some hope to others. Best of luck
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Re: Side effects

Postby Ladymac » Thu Aug 08, 2013 3:10 pm

stephy651 wrote:I am in my second month of Tecfidera.

I wake up with a sore throat as well, my airway felt like it was narrowing. I was nervous about getting enough oxygen today.



Hi there,

Sorry you are having such a rough time. Any time any medication, whether you take it once or no matter how many times causes sore throat or feeling like your having trouble breathing and swallowing would be considered to be a MEDICAL EMERGENCY. Please don't "wait it out" you could be having an allergic reaction.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Side effects

Postby lyndacarol » Thu Aug 08, 2013 5:41 pm

stephy651 wrote:I needed an annual OB/GYN appointment yesterday- set up months ago. During the exam, when she pushed on my stomach- I told her it hurt under my ribs. She ordered an ultra sound- that I did this morning. I don't have the results on this yet.

I did happen to get the blood work results though. My baseline ALT was 26 on May 29, yesterday's level was 52. I attribute this to this drug change.
...
I have gained 8 lbs. since June 27. I never gained that much weight when I was pregnant. I don't know how I gained weight, I've felt crappy all summer.

Please remember that I have the preoccupation with insulin…

And I suspect your pancreas is involved in some of these events. If your OB/GYN was pressing on the left-side ribs, that is the location of your pancreas. It may be inflamed.

Insulin is necessary for gaining weight; I think that inflammation in the pancreas is causing excess insulin to be secreted and causing your weight gain.

As I always do, I suggest that you ask your physician to order a "fasting blood insulin test." All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Side effects

Postby lyndacarol » Thu Aug 08, 2013 6:01 pm

Aud88 wrote:Stephy651- I will say this as another poster mentioned, it could be something else and not MS or the drug. For instance, the pain you had at the OB appt. before I started Tec I had back pain, leg tingling and had a constant urge to go to the bathroom. I was sure it was my MS getting worse. My Neuro ordered anMRI of my back and a CT of my ab and found no active MS, but rather a bulged disk in my back and ovariation cysts. Both of these could have caused my problems.

Aud88, you have good suggestions for possibilities to be checked out by Stephy. I have suggested to her and suggest to you as well that you request a "fasting blood insulin test" since I suspect problems in the pancreas. I do not think it indicates pancreatic cancer (the topic of The Dr. Oz Show today: http://www.doctoroz.com/episode/your-bi ... ideo=15537), but he does mention in the first minute the symptoms of abdominal & back pain, nausea, weight loss as symptoms stemming from a problem in the pancreas. I think the very irritating nature of insulin in the urine could be responsible for the "constant urge to go to the bathroom" as well.

Could Tecfidera be affecting the pancreas? With no definitive answer, all we can do is keep asking questions.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Side effects

Postby momofda » Sat Aug 10, 2013 2:03 pm

Hi everyone,
I am new to this board and have read all the posts about the side effects of Tecfidera. I was recently diagnosed (10 months ago) and just started Tecfidera 3 weeks ago. I had the flushing/redness/itching after the first dose, but now take an asprin ahead of time. No new issues until this 3rd week and the stomach pains started. It is in the upper stomach and I missed 3 days of working thinking it was the flu. I am glad to know I was not the only one having this side effect because it tells me it was most likely not the flu! Pepto doesn't seem to help so I will try the Imodium. Just wondering if the stomach issues are supposed to subside at all after continued usage. I have not read anything on that. Thank you in advance......and this forum is great, you all sound so helpful :-D
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