Have you switched to Tecfidera? Are you glad you did?

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

Re: Have you switched to Tecfidera? Are you glad you did?

Postby Ash3 » Sun Aug 18, 2013 11:56 am

Been on since May 15. Bloodwork good,MRI stable and I have had every side effect there is . I am now experiencing chills that come and go. Also, at night I may wake up on fire and soaking wet. Could be that I am in menopause. Well actually I know I am. So, not everything we feel etc., could be Tecfidera. I also have a massive muscle spasm from my left side of my brain stem to my shoulder blade. Neuro felt it and gave me a low dose of muscle relaxant and said go to a chiro which I already do. Massages as well. So, I am saying overall yes I am glad I switched. Hope this helps everyone. One more thing my family says I am so much better on this. Ash3
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Lola3334 » Sun Aug 25, 2013 12:06 am

I started Tecfidera about 5 months ago. I switched over from Copaxone and I'm so glad I did. I'm feeling a lot better these days. I didn't really have any side affects. I have some very minor flushing, bit barely noticeable. I believe I had itching once or twice. My right leg had been hurting for about a year now and the pain is gone. I'm feeling more energetic as well. Overall just more healthy.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Dorkbrain » Mon Sep 16, 2013 12:36 pm

Jimpsull - How are you doing now after a month?
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Pinkandgrey » Mon Sep 16, 2013 2:50 pm

I was on Rebif for almost 10 years. I didn't have any MS episodes or any problems with the Rebif. I was just tired of the needles and I was anxious to switch to Tecfidera. I have been on Tecfidera for 14 days and I am so glad I switched.  I have had minimal side effects, occasional flushing and small GI upset, but neither is painful. I read previous reviews that suggested taking the pills with heavier foods and I take them exactly 12 hours apart. Honestly, I was a little nervous about making the switch, but I am so happy I did. I hope this review helps others with MS that are considering Tecfidera. It has made my quality of life better so far!
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Jimpsull » Sun Sep 22, 2013 8:54 pm

So far so good. Function improved over this time last year. Hard to say what % of that is the BG-12 because I've also gotten stricter on Swank diet and taking supplements.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby xpsychiatricmd » Mon Sep 23, 2013 7:22 am

My main problem is the sleepiness/sedation. This is particularly an issue since following my last relapse, I was relegated to a wheelchair.
I need to use a walker to hopefully get my leg strength back.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby KDGO » Thu Oct 10, 2013 1:13 pm

Are any on you here that take Tecfidera JC positive? Did you get your lymphocyte count before starting?
Thank you.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Dorkbrain » Fri Oct 11, 2013 1:29 pm

I have been on Tecfidera since July 12. I stopped taking it July 29 because it had been making me violently ill since Day 12 or 13, plus I had hives, a rash, welts, itching, and other issues. I started back on it on August 2, but back at the lower dose. I took the lower dose for about a month without the horrible issues. In September, I started incorporating one 240 mg pill every few days until I got to where I am now, which is taking 120 mg in the morning and 240 mg at night, every single day. I went to the ophthalmologist yesterday, and my eyes are improving! And several people have commented that I'm walking better!! I'm also on Ampyra, but had recently started limping some, but not so much anymore! I'm excited! And my eye doctor said he was pumped!!
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby KDGO » Fri Oct 11, 2013 2:07 pm

Dorkkbrain All that sounds like good news. I am weighing Tecfidera. I am currently taking NrF2 which is an active ingredient of Tecfidera without any issues at all. I know "everyone is different" but curious about spine lesions which seem to now effect my mobility significantly. So therefore looking to avoid more lesions. Do you have lesions that are newer than when you were first diagnosed?
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Dorkbrain » Fri Oct 11, 2013 2:33 pm

KDGO wrote:Dorkkbrain All that sounds like good news. I am weighing Tecfidera. I am currently taking NrF2 which is an active ingredient of Tecfidera without any issues at all. I know "everyone is different" but curious about spine lesions which seem to now effect my mobility significantly. So therefore looking to avoid more lesions. Do you have lesions that are newer than when you were first diagnosed?


KDGO, I haven't had an MRI since I started on the Tecfidera. October 15th will be 20 years since my diagnosis, so I've had many MRI's over the years. I do have newer lesions than I did 20 years ago, but I don't know what the lesions are doing at the moment. I will post results whenever I have my next MRI. I don't have one scheduled at the moment, but I'm sure my neuro will want one before too long.

I had a really hard time when I first started on the Tecfidera, which was so disappointing since I'd been following the trials for two years with high hopes. I am SO glad I gave it another shot, though. Adjusting the dosage has helped so much, and I think I am getting the positive effects of the medicine without taking 240 mg twice a day. I don't know if I will stay on this dosage of 120/240 daily, or eventually move up to the 240 mg twice a day. The abdominal pains I had before were so excrutiating that I'm scared to think it might happen again. Anyway, what I'm trying to say is if you do get on it, you might want to ease into a little. Taking the starter pack of 120 mg twice daily for the first week, then going straight to the 240 mg twice a week may be too fast. If you try it and get the horrible abdominal side effects, I would highly recommend lowering the dosage back down rather than quitting altogether, because I think I am now doing great on the meds and am VERY happy I stuck it out.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby KDGO » Fri Oct 11, 2013 2:42 pm

This is hopeful...sort of. My gut is one of the things I am so comfortable with ...compared to my neuropathic blue feet! Of course when I go to the neuro there is a big push for some DMD even though I am on LDN (prescribed by an alternative doc). After 2 yrs on a strict diet and LDN my February MRI was a rude awakening!
More lesions on my spine than they could count.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Dorkbrain » Fri Oct 11, 2013 2:47 pm

Jimpsull wrote:So far so good. Function improved over this time last year. Hard to say what % of that is the BG-12 because I've also gotten stricter on Swank diet and taking supplements.


I'm glad to hear that report! I hope you're still doing well.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Dorkbrain » Fri Oct 11, 2013 3:48 pm

KDGO wrote:This is hopeful...sort of. My gut is one of the things I am so comfortable with ...compared to my neuropathic blue feet! Of course when I go to the neuro there is a big push for some DMD even though I am on LDN (prescribed by an alternative doc). After 2 yrs on a strict diet and LDN my February MRI was a rude awakening!
More lesions on my spine than they could count.

Oh, if you're concerned about your gut, I would definitely recommend that you go slow with the meds if you get on Tecfidera. After I had such a bad reaction, my neuro wanted me to go on the low dose for two months, or maybe forever. But, since there has been no research on whether this would be effective, I wanted to do more than that. Taking only the lose dose for a month was quite helpful, and I've really had no problems since I eased into adding the evening 240 mg dose.

So, if you say there's a big push for some DMD, does that mean you're not taking anything in the DMD family? Wow! That's scary. I hope you'll really consider the Tecfidera, but take it slow. I've been on Betaseron, Copaxone, Avonex, Rebif, and Methotrexate. Not only do all the shots suck, but none of those quite stopped relapses altogether, and they certainly offered no hope for any improvement. But I feel like with the Tecfidera, I AM experiencing some improvement after taking it for three months. It is fantastic to think that maybe I'm getting a little better! I hope you can have a similar experience.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby ShootingStar » Wed Oct 16, 2013 11:58 am

Yes, and Yes. I was using Avonex for about 18 months and really wanted to switch to one of the oral meds. I have been a Tecfiderian since May and aside from minor stomach issues the first 2 or 3 days, it's been great. My last relapse was September 2010.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby ClaudeM » Mon Nov 04, 2013 4:52 am

Hi,

I am doing a research on side effects of Interferons.

I went through the 1 year therapy with INTRON A, with a really high dose. 30 MIU 5 days a week for 4 weeks and 18 MIU 3 days a week for 48 weeks.

I really had some bad side effects like headache, nausea, fatigue, mild depression, hair thinning, muscle ache (legs and back), fever.

I wish i had someone to talk to while going through this "liquid" hell. To someone who really understands what i am going through, but i was alone.

Now i am doing this research and trying to help all other people who are currently going through treatment with any form of Interferons like Intron A, Roferon A, Pegasys, Avonex...etc.

I want to collect people's personal experiences about how they copped with side effects. Maybe some people know home remedies to reduce them.

So, i want to share these stories with the world and help others who are in need.

Would you be interested in being part by telling the world your story?

May you be well,

Claude M
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