Side effects

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

Re: Side effects

Postby FLRA » Thu Jan 09, 2014 7:28 pm

Hello, my wife has been on Tefidera for 12 days. This is day 4 of the 240 mg dose and she was hit with major stomach pain ~2 hours after taking with other meds which includes one 81mg aspirin. She was dx in 2000 and has been on Betaseron, Copaxone, and Rebif. About an 8 month hiatus in therapy before starting Tecfidera. The posts on diet and regimen have been insightful. Since today is the first day of any symptoms we will be contacting her Nuerologist tomorrow. Headed to the store to get some Jimmy Dean breakfast sandwiches per Ladymac's recommendations.
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Re: Side effects

Postby stef282 » Sun Jan 26, 2014 11:30 am

Half way through second full month and I still suffer with constant nausea. The flushing is dramatically less if at all but I can't seem to eat enough in the morning for the first dose. I read eating protein such as eggs help when done in combination with the dose and I think it does a bit but I don't want to need to have so much food in my system all the time for this med. I suffer from this nausea during the night as well and Advil/ aspirin doesn't hep much. I am considering going back to a shot which also isn't amazing since I am already on others. This medicine is to have the least amount of side effects of the new pill options but I honestly wonder what the long term effects will be when it makes a person so sick this length of time. I may go on a hiatus from all drugs and see where that gets me (not to say others should but at some point do we know whether we are better off on than off with all of the side effects)?
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Re: Side effects

Postby Kacychristine » Tue Mar 04, 2014 6:42 pm

I just started taking Tecfidera about 1 month ago. This is my first MS medicine ever. I am needle-phobic so my Neuro thought we would try this. I eat a paleo diet, and exercise a ton, but I felt like I wanted to really boost the fight against MS.

So far, I have only experienced the flushing as a side effect. In all honesty, it lasts about 20 minutes approximately 3 hours after I take the pill. The thought of sticking myself with a needle makes my skin crawl, so if that's the worst thing to happen, I can deal.

In the AM, I eat a banana and some cashew or almond butter (about 3-4 spoonfuls of it) and it totally does the trick. No stomach issues whatsoever, and I am on the full dose. Only time will tell, but so far, I am really really pleased with the results.

And one note - eating a diet based on frozen, processed foods isn't something I would recommend as those food choices can be detrimental to our bodies (and stomachs) in general. I would recommend the nut butter (peanut would be my last choice) because it's high in fat and slows your bodies' absorption of the drug. Also, About a week before you start taking it, I would use a pro biotic to get your intestines in a good state. That will help a bunch.
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Re: Side effects

Postby hargravet1 » Wed Mar 05, 2014 4:32 pm

I am 25 days
into this pill. The stomachpain and nausea are unbearable, I actually threw up at work today. My body tends to reject everything i put in it like poison. This is hard because im also diabetic. I was previously on Avonex and the flue like symptoms never went away. Im at the point that i want to take nothing. I see my neuro next week. She will not be pleased with this decision. Is therr any holistic treatment out there? Help
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Re: Side effects

Postby lyndacarol » Wed Mar 05, 2014 5:12 pm

hargravet1 wrote:I am 25 days
into this pill. The stomachpain and nausea are unbearable, I actually threw up at work today. My body tends to reject everything i put in it like poison. This is hard because im also diabetic. I was previously on Avonex and the flue like symptoms never went away. Im at the point that i want to take nothing. I see my neuro next week. She will not be pleased with this decision. Is therr any holistic treatment out there? Help

Welcome to ThisIsMS, hargravet1.

I have not used Tecfidera; therefore, I cannot offer suggestions for that. I used Betaseron for three years, Avonex for over seven years, and Copaxone for six months, but I did not feel any one of these was effective and stopped all disease-modifying drugs several years ago.

Because I believe my MS symptoms are due to my chronic high insulin level since puberty, I am interested in your mention that you are diabetic. I assume you have type II diabetes. I am not diabetic, but I know that type II diabetes is marked by insulin resistance in the cells and high insulin levels. Has your GP (or endocrinologist) ordered a "fasting blood insulin test"? – This test is NOT the same as a glucose/blood sugar test.

There is no medication available to reduce the insulin level. Only diet is effective at lowering the insulin level. I urge you to read the Diet forum here at ThisIsMS. 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 Cynde » Thu Mar 06, 2014 7:31 am

I just took it for the first time this morning. About 20 minutes after I took it, my face started to burn. I rapidly developed extreme itching on my face, neck, and arms. My skin puffed up a bit and turned red. I looked like I had a severe sunburn. This lessoned after about 45 minutes, when I got the chills. :I'm not looking forward to taking it again.
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Re: Side effects

Postby lobra » Tue Mar 11, 2014 7:39 am

hi,

my wife (RRMS since 2004) has started with 30 mg DMF-capsules (yes it does not come from the organized crime, but from a Swiss pharmacist at about 7 % of the price of Biogen...), first once a day, then twice. With that low dose we already saw a very good effect on her walking capacities: 300 m altitude diff. in less then an hour, and on her balance. Unfortunately the enteric side effect were ugly with a daily dose of 60 mg twice a day, so she has to start again with the lowest dose, and take probiotic capsules. It seems, that these side effects are completely different from one person to another. But anyway, she is very motivated to continue, and I am happy to have a much stronger partner for my walks.

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Re: Side effects

Postby Gumpetta » Thu May 01, 2014 6:17 pm

Thanks so much for all of the great information and posts. I switched to Tecfidera after taking Avonex, Copaxone and Rebif since 1997 where I was very tired of the flu like symptoms and needles. I am in my second week of the medication with minimal reactions - I have had no GI issues so far, flushing only occurring day 1 and day 8 but am waking up every morning at least an hour before my alarm goes off and was actually relieved to hear others having similar issues as this hasn't been a publicized side effect. I take in the morning with a smoothie (Breakfast shake, Banana, and Spinach) and in the evening with dinner, multi-vitamin, Vitamin B, and 5,000 IU of Vitamin D.

I'm fortunate that I have no physical disability at this time and credit this with working out with a trainer 1x per week. I recognize that not everyone would be able to do this but encourage you even on your own to do exercises that help with your core as it has helped with flexibility and stability. I do, however, have cognitive issues that are hard to diagnose (is it MS or is it being 45 with 2 kids and a full-time job?!?). In any event, I do feel like my cognitive issues have gotten a bit better while on Tecfidera, however, have concerns that this won't last long w/o my proper sleep. I will vary the time I am taking at night in hopes of having a positive effect on my sleeping patterns.

I will continue to keep others posted on my experience as it's important for individuals seeking information to see the good as well as the bad.
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Re: Side effects

Postby Standswith » Sun May 11, 2014 3:49 pm

Hi, All,

Thank you for sharing your wisdom about Tecfidera. I took it all to heart. I've been on it for 6 weeks now and, besides one day of nausea and one day of abdominal cramps, I've had no side effects. I go in for blood work this week to check for white blood cell count, etc.

Here is what I've done (based on your suggestions):

I started taking a probiotic a couple of weeks before starting the meds.

I drink a smoothie (frozen berries, fresh strawberries or peaches, kale or spinach, coconut milk, and chia seeds) and have some bacon or other meat in the morning. I also take vitamin b and d supplements, magnesium supplement, liver pills, and a baby aspirin about 15 minutes before the Tecfidera.

In the evening, I don't take the Tecfidera until I'm about halfway through dinner. I am on a Paleo diet and have cut out gluten, refined sugars, eggs, and dairy. I also have some wine every night. This has not affected my stomach, but I do fall asleep pretty hard in the evenings, possibly due to this combination!

I wish you all the best of luck. I really believe that some people are going to be sensitive to the drug no matter what, but maybe some of us can use diet and supplements to help our bodies adjust.
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Re: Side effects

Postby MSandI » Sun May 11, 2014 4:14 pm

Hi Standswith
I just read your post and something you said you take caught my eye. You said you take liver pills. Could you tell me what they are ?
Thanks
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Re: Side effects

Postby Standswith » Sun May 11, 2014 4:33 pm

MSandI wrote:Hi Standswith
I just read your post and something you said you take caught my eye. You said you take liver pills. Could you tell me what they are ?
Thanks
Ann



Sure, Ann. I am basing much of my diet on Dr. Terry Wahl's (Wahl's Protocol) suggestions. She is a big proponent of eating organ meet because of its high nutritional value. However, I am not a fan. I've tried, really I have. So, in the back of the book, she listed the resource of dehydrated liver in capsule form from Dr. Ron's Ultra Pure. I take 2 capsules a day just so I can feel better about never wanting to eat liver for dinner again. :smile:
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Re: Side effects

Postby MSandI » Sun May 11, 2014 4:39 pm

Hi Standswith
I totally misunderstood, I thought it was a supplement you were taking for good liver health, like milk thistle or something of that nature. Thank you for answering my question.
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Re: Side effects

Postby lyndacarol » Sun May 11, 2014 6:59 pm

Standswith wrote:
MSandI wrote:Hi Standswith
I just read your post and something you said you take caught my eye. You said you take liver pills. Could you tell me what they are ?
Thanks
Ann



Sure, Ann. I am basing much of my diet on Dr. Terry Wahl's (Wahl's Protocol) suggestions. She is a big proponent of eating organ meet because of its high nutritional value. However, I am not a fan. I've tried, really I have. So, in the back of the book, she listed the resource of dehydrated liver in capsule form from Dr. Ron's Ultra Pure. I take 2 capsules a day just so I can feel better about never wanting to eat liver for dinner again. :smile:

I find this conversation about liver and liver capsules VERY interesting in view of this history:

As previously discussed (general-discussion-f1/topic6044.html), this case of "Remission of multiple sclerosis post-liver transplantation" (http://www.ncbi.nlm.nih.gov/pubmed/15595263) may have a connection to the discussion here.

A Caucasian woman with MS received an urgent liver transplant for fulminant liver failure at the age of 59. Her Extended Disability Scale Score (EDSS) pretransplant was 5.0 and clinically she had cerebellar and brainstem dysfunction. Post-transplant immunosuppression consisted of tacrolimus, mycophenolate mofetil and tapering corticosteroids that were discontinued after 1.5 years. Post-transplant her EDSS decreased to 2.0 and after three years she is clinically asymptomatic with only very mild dysarthria on neurologic examination. Long-term maintenance immunosuppression consists of low dose tacrolimus.
I am now convinced that the transplanted liver was a new source of vitamin B-12.

The liver/liver capsule element of Dr. Wahls' program seems to fit as well, as does her recommendations for bone broth.

Further support for this idea came today when I read: http://www.jdmdonline.com/content/12/1/17

Clinically overt features of vitamin B12 deficiency manifest by 5–10 years owing to the large body stores in the liver mainly that are not quickly depleted [28].


I was looking for a connection between type II diabetes (hyperinsulinemia) and vitamin B12 deficiency to explain the fact that "Diabetics are low in magnesium" as mentioned in the video (@1:19): http://www.doctoroz.com/videos/3-tests- ... -life-pt-3

So many aspects of MS seem to swirl around vitamin B12, in my opinion.
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Re: Side effects

Postby MSandI » Mon May 12, 2014 12:41 pm

Hi Lyndacarol
I read your links and watched your video. Now I am wondering are you saying that liver pills with b12 would be a great idea? How much b12 should a female with ms take daily in your opinion? Or a b12 shot would be better... or shot and the vit together for more in the body?
Thanks Ann
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Re: Side effects

Postby lyndacarol » Mon May 12, 2014 4:48 pm

MSandI wrote:Hi Lyndacarol
I read your links and watched your video. Now I am wondering are you saying that liver pills with b12 would be a great idea? How much b12 should a female with ms take daily in your opinion? Or a b12 shot would be better... or shot and the vit together for more in the body?
Thanks Ann

Vitamin B12 is found in animal sources. Most B12 is stored in the liver (I have heard that as much as 90% of a body's B12 is stored in the liver.) and if you can stand to eat liver, or chicken liver pâté, or chicken livers and onions (as my mother LOVED to eat), that would be a good source of the vitamin. I assume that liver pills would therefore contain B12 and be another source. Since B12 is a water-soluble vitamin, anything more than your body needs should be flushed out in your urine.

Intrinsic factor (made in the stomach) and other enzymes are necessary to separate the vitamin from its source; if your body is not making enough of these, the vitamin cannot be absorbed. If you have a problem in the ileum (last part of the small intestine where B12 is absorbed), it also will not be taken into the body.

Even if an adequate amount of B12 reaches the bloodstream, there can be problems using the vitamin in the tissues. It is my opinion that B12 shots would be able to overcome these problems better. My doctor has prescribed one B12 injection (of 1000 µg) every four weeks as trial. Recently, I learned that my nephew is receiving one injection per week for 10 weeks (he is diabetic and is starting to have tingling in the extremities).
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