For those of you thinking about starting on Tecfidera

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.
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amillen
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For those of you thinking about starting on Tecfidera

Post by amillen »

Hi. I just wanted to encourage anyone starting Tecfidera. I had a hard time choosing Tecfidera because of the side effects. When you do a web search, there is not even one person saying, "Hey, you might not get these side effects" or "Its not that bad." Even my own Neurologist told me I might be wearing Depends. This is my 4th medication in 3 years since my diagnosis, and I always have a hard time switching because of fear...fear that the treatment for my MS is worse that the disease itself, and I always get all of the worst side effects mentioned. Anyway, I began Tecfidera a couple of weeks ago and only have had one episode of flushing and no GI symptoms at all. With my first dose, I had pretty severe flushing all over my entire body and it was so itchy; this lasted around 2 hours. My second dose caused mild flushing...and after that, absolutely no side effects, as long as I take it with a meal. This is key!!! It must be taken with food!! Otherwise, I do get the nausea and indigestion. I pray these words of encouragement are of some help to those researching this drug, looking for just one person that is not having a horrible experience. I am NOT having a horrible experience. You can do it!! Of course this doesn't mean you wont have a terrible experience also. I just wanted to get it out there, that there really are people that can tolerate this drug...even if you've had bad experiences is the past.
Margarita
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Re: For those of you thinking about starting on Tecfidera

Post by Margarita »

:) thank you
gramcjk
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Re: For those of you thinking about starting on Tecfidera

Post by gramcjk »

Hello. I have posted several times since starting Tecfidera how very happy I am with the results of this new drug. I started it as soon as it was approved! I had to fight doctors to prescribe it for me. Changed to a new doctor that was as willing to take a chance with this new drug as I was. I have had NO side effects. I feel so much better since starting this. And you are correct. We must eat a good meal with medication, or we have issues. I have found a hard boiled egg in A.M. makes the whole day go smoothly. If I don't eat an egg, I will have an upset tummy, but pepto bismal takes care of that for me. We are all different, but this works for me. No relapses since I started this. Clean MRI no new lesions and old ones seem to be repairing them selves. I am much more heat tolerant, and my husband thinks I am a much happier camper over all. I would recommend this to anyone thinking of starting dmd's for MS. Good luck to Anyone who wishes to stop being a human pincushion with all the horrible side effects starting this drug. For me it has been a miracle drug. GRAMCJK
Margarita
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Re: For those of you thinking about starting on Tecfidera

Post by Margarita »

It is a good news for us.Thank you!
lucy311
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Re: For those of you thinking about starting on Tecfidera

Post by lucy311 »

Hi, I'm from Croatia so please excuse my language mistakes. I'm reading all the posts you wrote and I wanted to ask for advice. MS was diagnosed to me 1 year ago and since then i didn't have some really serious symptoms, only tingling in hands and legs, no sensation at all, trouble with sleeping, tremor of the left hand, fatigue and dizziness. MRI was the same from the beginning, no new lesions. My neurologist suggested me to take a part in the study between 2 drugs, teriflunamid (aubagio) and ponesimod. I would go for one of them, but I don't know which one. My wish was to take Tecfidera actually. So I wanted to ask you for advice, in this stage of disease with this kind of symptoms, would you take any drug at all and if yes, would you be a part of the study or prefer to get Tecfidera at some point? (in Croatia it is a bit different protocol of getting drugs, we need to have diagnosis for at least 1 year and at least 2 relapses whitin 1 year :/ ). I would appriciate any advice or experiance. thank you
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NHE
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Re: For those of you thinking about starting on Tecfidera

Post by NHE »

lucy311 wrote:Hi, I'm from Croatia so please excuse my language mistakes. I'm reading all the posts you wrote and I wanted to ask for advice. MS was diagnosed to me 1 year ago and since then i didn't have some really serious symptoms, only tingling in hands and legs, no sensation at all, trouble with sleeping, tremor of the left hand, fatigue and dizziness. MRI was the same from the beginning, no new lesions. My neurologist suggested me to take a part in the study between 2 drugs, teriflunamid (aubagio) and ponesimod. I would go for one of them, but I don't know which one. My wish was to take Tecfidera actually. So I wanted to ask you for advice, in this stage of disease with this kind of symptoms, would you take any drug at all and if yes, would you be a part of the study or prefer to get Tecfidera at some point? (in Croatia it is a bit different protocol of getting drugs, we need to have diagnosis for at least 1 year and at least 2 relapses whitin 1 year :/ ). I would appriciate any advice or experiance. thank you
Welcome to ThisIsMS. Here's something you might want to look at...

Quality of life higher with dimethyl fumarate than Fingolimod
http://www.ms-uk.org/quality-life-highe ... mod-171016
  • According to a recent update on the Univadis website, patient-reported quality-of-life variables showed a preference for dimethyl fumarate compared to Fingolimod. Head-to-head trials comparing of fingolimod and DMF have not been conducted in the past.

    Although time-released dimethyl fumarate (DMF; Tecfidera) and Fingolimod (Gilenya) showed similar reductions in relapse rates and disability progression among individuals with relapsing-remitting multiple sclerosis (RRMS) in an indirect comparison study, patient-reported quality-of-life variables showed a preference for DMF.
Source: https://www.univadis.co.uk/viewarticle/ ... mod-450961
lucy311
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Re: For those of you thinking about starting on Tecfidera

Post by lucy311 »

:smile: thank you!
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carolsue
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Re: For those of you thinking about starting on Tecfidera

Post by carolsue »

Actually, I don't even need to take Tec with a meal anymore. No flushing, no GI problems.
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