Weight gain, new flares from Tec

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

Weight gain, new flares from Tec

Postby sapphire » Fri Aug 23, 2013 2:18 pm

Hi,

I just registered here because I feel it's important to share my Tecfidera experience.

I noticed when reading the side effects thread that some other people had similar issues as me, yet most responses were to attribute them to another cause.

Tecfidera is new to the market, this means that there can be side effects that become apparent which were not reported in the studies. It's important not to ignore them just because most people don't experience them.

The most disturbing and unusual side effects I have had from Tecfidera are weight gain and a noticable increase in new exacerbations. I also think it made me suseptible to a virus.

I have been taking it for a couple months. At first I had some of the GI problems but that got better in a few days. I still have flushing but it is minor.

I've had MS for 20 years, so I understand MY MS and the ebb and flow of the disease.

For these past 20 years, I rarely get colds or flus, and when I do they are mild. Yet shortly after starting Tec, I got a very nasty flu that I had trouble gettign rid of. Could it be a coincidence? Maybe.

I have weighed the same for years, but now I gain 10 pounds without eating more.

But the scariest thing is the exacerbations. I have had more exacerbations in 2 months than I normally get in a year. Some were older symptoms coming back, twice I got a collection of brand new symptoms that lasted for over a week. At first, I withheld judgement, because this disease can be unpredictable. But now I am very concerned that the Tec is causing flares.

My Dr wants me to keep taking it for now, but I am thinking of stopping.

Bloodwork is all normal.

I am curious about other people with similar experiences. Having seen some posts on the side effect thread, it seems I am not the only one.

I am saddened by this, I really wanted it to work.
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Re: Weight gain, new flares from Tec

Postby cct » Fri Sep 06, 2013 6:26 pm

I share your concern that Tecfidera is possibly causing exacerbations for my husband. At first he had GI problems.

After starting the higher dosage he began having weakness, body aches, fatigue, muscle spasms, and "MS hug". He also had more severe stomach pain every time he ate.

The doctor had him stop taking Tecfidera a few days and he improved.

Next he started a lower dose (1 pill per day instead of 2) and the symptoms returned.

The only symptoms that he ever experienced (before starting Tecfidera) were double vision, memory/concentration issues, and MS hug. So, there were many symptoms that developed while taking Tecfidera that he never experienced before.
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Re: Weight gain, new flares from Tec

Postby NHE » Sat Sep 07, 2013 1:00 am

cct wrote:I share your concern that Tecfidera is possibly causing exacerbations for my husband. At first he had GI problems.

After starting the higher dosage he began having weakness, body aches, fatigue, muscle spasms, and "MS hug". He also had more severe stomach pain every time he ate.

The doctor had him stop taking Tecfidera a few days and he improved.

Next he started a lower dose (1 pill per day instead of 2) and the symptoms returned.

The only symptoms that he ever experienced (before starting Tecfidera) were double vision, memory/concentration issues, and MS hug. So, there were many symptoms that developed while taking Tecfidera that he never experienced before.


Dimethylfumarate is a strong oxidizing agent that's reactive against thiol groups such as those on cysteine in glutathione. It is meant to trigger the production of cellular defense enzymes. However, I suspect that the oxidative effect of dimethylfumarate may be too strong for some people especially those that are already under oxidative stress.
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Re: Weight gain, new flares from Tec

Postby gmbee » Fri Sep 20, 2013 6:10 am

I just joined this forum also to see about Tec. I started Tec about 5 months ago. I love it since no more shots. But I have now had vertigo for 2 months ( did steroids without help), weakness has increased, balance really bad. I don't know if it is the medicine or just the progression of the MS. I don't know what to do. I have had MS for 7 years now. My husband wants me to go back on rebif but I hated doing the shots. Please give me your thoughts.
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Re: Weight gain, new flares from Tec

Postby smslol » Sat Sep 21, 2013 3:36 pm

I am also having symptoms I did not have before taking Tecfidera. Increased balance issues, problems walking after taking it for 4 weeks, hip pain, leg pain & muscle weakness, pain in my hands, wrist, back, & feet. I am starting the 6 th week on Monday. I see my Neurologist on Thursday. I am not sure I can stay on this drug. I was fatigued before but now after taking Tecfidera it's worse. I had been on Rebif for 6 1 /2 years with no problems. Prior to that I was on Copaxone for about 5 + years. Stared Rebif after having 2 MRI's with an increase in lesions. I feel like I should go back on the Rebif . My quality of life and the way I feel are negatively affected! Smslol
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Re: Weight gain, new flares from Tec

Postby MoodymommawithMS » Thu Nov 21, 2013 3:43 pm

well my name is maria

how r u?

just in brief but will return to reply in more length

I am gaining weight, I have tingles, chills, flushing, anxiety

flu like feeling

and I feel like im going to have an eacerbation.


I was fine before thie medicine


im worried this wqs a mistake
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Re: Weight gain, new flares from Tec

Postby lyndacarol » Fri Nov 22, 2013 8:14 am

MoodymommawithMS wrote:well my name is maria

how r u?

just in brief but will return to reply in more length

I am gaining weight, I have tingles, chills, flushing, anxiety

flu like feeling

and I feel like im going to have an eacerbation.


I was fine before thie medicine


im worried this wqs a mistake

Welcome to this is MS, Maria. I am glad you have found us.

You have not been here long enough to know that I am the "insulin girl" – I believe that excess insulin plays a major role in my MS symptoms. Like me, you mentioned having tingles.

You also mention gaining weight. Insulin is necessary for gaining weight. If there has been no change in diet that might account for any weight gain, your pancreas may be producing excess insulin (as a result of a new medication, infection, insulinoma tumor, or just MS itself as I suspect in my case). I suggest you see your physician and request a "fasting blood insulin test" – this is NOT the same as a glucose (blood sugar) test. An insulin test result higher than 3 UU/ML could explain your weight gain. Then, you and your doctor can determine the cause of the elevated insulin. It is very possibly due to Tecfidera; check the drug insert for the list of possible side effects.
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: Weight gain, new flares from Tec

Postby CatChick » Fri Nov 22, 2013 9:32 am

Hi MoodymommawithMS .. Am I correct to say that this is day 2 of the starter pac for you? If so the weight gain you are feeling is likely bloating. I know I've feel very bloated and gasy since taking the meds but taking something like GasX has helped. I have flushing too .. right now I'm sitting at work and my face is bright red and hot. I think someone suggested that taking asparin would help this but it's not working for me. So I totally get that the flushing and internal heat up is uncomfortable. I've not had tingles (more than normal for me anyhow), or chills and anxiety. I hope someone else can give insight on these side effects for you.
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Re: Weight gain, new flares from Tec

Postby DanaL » Fri Dec 27, 2013 6:15 am

I gained weight with the initial starter pack which fell off after I quit on day 12. It was just a 3-4 pounds and I was eating less, not more. That dosage caused a dramatic decrease in appetite. Then I started a slower titration in November - 1 120 per day; am on 2 120s per day now. 5 pounds up, but it is also thanksgiving and Xmas and I've eaten more bad stuff than I should have. But I always do this time of year and usually don't gain more than 1-2 pounds that comes off after it's all over. I have had to make a effort to eat fat with the meals when I take the medicine because it does help with the flushing sometimes. Other times the fat does nothing and I still flush, so I am wondering if sugar/bread is really the problem. Going to NOT eat any of that stuff this morning and see if it helps. I can't say the gain is attributable to the tecfidera but I am curious about it.

I do not have any MS symptoms though. I've been very fortunate with my MS - only had two attacks in 13 years. I only get a little weak and numb when I get too hot, and my feet feel cold always now while they used to be permanently numb.
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Re: Weight gain, new flares from Tec

Postby msmything » Sun Jan 05, 2014 10:08 pm

with regard to vertigo after starting Tec, I have noticed really bad ringing in my ears, and kind of drunken walking. I'm not as excited about this drug as my Doc, but it sounds better on paper than Aubagio. I'm done with MS I guess how 'bout you guys?

Colleen
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
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Re: Weight gain, new flares from Tec

Postby jjaress1 » Sun Jan 12, 2014 9:47 pm

Hey ya'll. New to blog site. Started Tecfidera last week. As long as I follow a strict "diet" (no soda or acidic foods, fatty meals) and pill regiment (2 "baby aspirin and a Zantec) my GI issues have been mostly kept at bay. I have noticed, well, not so much weight gain but bloating. I'm still small every else but I look like I'm about 6 months pregnant by nightfall!

My BIGGEST complaint however is INSOMNIA! I haven't been able to fall asleep at night until 1,2, even sometimes 3am. And that's when the body aches and weakness really hit hard the next day. I am physically and mentally exhausted all the time. I've looked everywhere on the internet for the drug causing this type of side effect, but can't find anything. I have a call into my neurologist so hopefully will hear something back tomorrow. Has anyone else had issues with insomnia though and if so, how did you combat it?
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Re: Weight gain, new flares from Tec

Postby CatChick » Mon Jan 13, 2014 2:33 pm

Hi jjaress1! I had insomnia too but didn't even consider it was side effect of the tec. I cut back on caffeine and took melatonin an hour before I went to bed for a couple of nights and that fixed things for me. I haven't had any issues with it since (*knock wood*)

I was very bloated and gassy at first too but these side effects have passed. I've been on the meds for about 11 weeks now, I think. My memory isn't so good :)

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Re: Weight gain, new flares from Tec

Postby jerrygallow » Fri Feb 07, 2014 9:19 pm

I noticed my symptoms kicked up. They went away when I stopped. I guess it's not good to start and stop, but I don't see how this is helping when it makes things feel numb that were formerly mostly normal
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Re: Weight gain, new flares from Tec

Postby ksmigle » Sun Apr 06, 2014 7:55 am

I am so glad I found this site! I have been fallling a lot lately an have been on Tec for 1 month + 1 week. My mother had a feeling it was the new med (Tec) that was causing my lovely 'flying Wallendas", as I have named my falls sincw being diagnosed 20 yrs. ago! (You have to find some humor with this disease or you'll just go nuts!

I have noticed increased weakness, pain, marked decline in my vision, fatigue, etc. At 4:00 am, I woke to go to the bathroom, and found that I had also had an accident (time for Pull-ups, I said to my self), I was so weak, I could not get off the toilet to wash my hands or return to bed! My son, who is now 23, was there to assist me to get to my back to my bedroom, however, the pain and weakness would not allow me to return to my bed! Once my mother woke up, I eventually made it back TO MY BED! She and I were talking and by the grace of God, I found this site!

I decided after reading this thread that I would not take my Tec today and will call my neurologist tomorrow. I had experienced the bloating and flushing and was so happy to be off the Copaxone as I started to get "pits" from taking the shot, that I could have done cartwheels when Tec came out and when my doc said we should start it as the Copaxone had stopped working. Now, I'm quite sad to have to stop taking sad. But I cannot function with this med at the thought of having to stop taking it! I will let everyone know what my Doc has said!

Again, thank God I found this! 0
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Re: Weight gain, new flares from Tec

Postby lyndacarol » Sun Apr 06, 2014 8:57 am

Welcome to ThisIsMS, ksmigle. We are glad you found us, too.
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