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Re: Tecfidera

Posted: Fri May 24, 2013 9:44 pm
by Kittykat74
Just started Tecfidera last night. Taking Imodium (2mg 1x day) as a precaution. No side effects so far (maybe some minor itchiness after first dose... maybe that was psychosomatic because i was a little anxious). Eating before taking capsule & drinking lots of water thru the day. I'm very excited about this treatment after a year of torture on Copaxone. Knock on wood.

Re: Tecfidera

Posted: Fri May 24, 2013 11:25 pm
by Kittykat74
KClay wrote:I had flushing with first dose. I was red and itchy all over--even my feet!! Lasted about an hour. Since that dose, I can't tell I've taken anything. I was itchy last night-- no redness, just itchy.
Kelley,

How are your side effects now?

Re: Tecfidera

Posted: Sat May 25, 2013 4:20 am
by KClay
Not bad at all. I flush now and then, have gi issues a few times a week. I will definitely take that over the side effects of avonex!! Plus, tecfidera is supposed to be more effective.

Re: Tecfidera

Posted: Tue Jun 25, 2013 5:28 pm
by Alphasig1514
I just started the full dosage on Sunday and so far so good...knock on wood!
The first dose (starter week) I got flushing on my face/chest that lasted about an hr or so. Then I never noticed it again until I took the first pill of the full dose this past Sunday. But the flushing only lasted about 1/2 hr.
I've had occasional itchy eyes - but the weather has been stupid here so it could be allergies.
No real issues with GI/bowel/tummy. Again...knock on wood.
The specialist I went to see gave me Tecfidera and Copaxone as my choices for meds. I wasn't real keen on giving myself injections so we're gonna start me on this and see where it leads. Hopefully it works as I would much rather 'pop a pill' a few times a day than use an injection.
And if it keeps me from having an relapse that will be even better.
My insurance does cover part of the cost ($55) and I am going to do the co-pay assistance since they do offer it. There is no way I could afford this drug if my insurance didnt cover it! And thankfully Biogen does the copay assistance.

Re: Tecfidera

Posted: Wed Jun 26, 2013 12:52 pm
by Ash3
good luck to everyone because I have had every side effect and everyday does get better but I have found that whether I want to or not keeping something on your stomach at all times helps so much. ash3

Re: Tecfidera

Posted: Thu Jun 27, 2013 7:27 am
by dlynn
Does anyone know,
Is this drug, Tecfidera, the one that is similar to Protandim? I might have this confused with another new oral ms drug.
thank you

Re: Tecfidera

Posted: Sat Jun 29, 2013 8:54 am
by Ladymac
Ash3 wrote:good luck to everyone because I have had every side effect and everyday does get better but I have found that whether I want to or not keeping something on your stomach at all times helps so much. ash3
Check out my post on this site on how to minimize or maybe eliminate any of the side effects. There are many people that are having success with making these minimal adjustments to diet and timing of meals and meds.

http://www.thisisms.com/forum/tecfidera ... 22462.html

Please let us know how you are doing.

Re: Tecfidera

Posted: Tue Aug 13, 2013 12:25 am
by holli747
I'm on my 11th day of the medicine and have the flushing. But I'd like to know if anyone has experienced a heightened sensory change? My fingertips and toes are like they are being shocked...its horrible!!

Re: Tecfidera

Posted: Tue Aug 13, 2013 1:25 pm
by mumsie
i took tecfidera for two days. then my bp went through the roof. fluctuating badly. i ended up in the e.r. my bp did this for 4 days. i had diarreah too. and flushing so bad i was purple. im still nauseous and weak. and i only took two pills.

Re: Tecfidera

Posted: Mon Aug 19, 2013 7:59 am
by Ladymac
Wow mumsie, I am so sorry to hear about your awful experience. Perhaps there were other things going on. I hope you are ok.
Best Regards,

Re: Tecfidera

Posted: Mon Aug 19, 2013 11:23 pm
by NHE
mumsie wrote:i took tecfidera for two days. then my bp went through the roof. fluctuating badly. i ended up in the e.r. my bp did this for 4 days. i had diarreah too. and flushing so bad i was purple. im still nauseous and weak. and i only took two pills.
Hi Mumsie,
I'm sorry to read that Tecfidera put you through such an ordeal. I encourage you to file an adverse event report with the FDA. Since Tecfidera is a new drug, reporting the adverse events will help both doctors and patients learn about its side effects which aren't listed in Tecfidera's doctor's prescribing information.

http://www.fda.gov/Drugs/GuidanceCompli ... efault.htm

Re: Tecfidera

Posted: Tue Aug 27, 2013 10:06 pm
by Jimpsull
I have been on about 3 weeks. SFSG - I try to have a carb, a protein, and fat ( fish oil) with each dose. This was based on Ladymacs suggestion (Tecfidera side effect thread) but modified for Swank diet.

I have had niacin flush. I have stopped taking niacin for now, may resume later. I have had "threatening flush" - like I could feel it thinking about coming on - but it hasn't been anywhere near what I experienced with niacin (500 mg). I have also been flatulent / gassy.

Re: Tecfidera

Posted: Sat Aug 31, 2013 4:06 am
by Ladymac
Hi Jimpsull,

The gassy goes away, and for many of us most of the side effects go away and we can resume our normal eating. Many of us did use some Gas-X and that was helpful. Cutting down on gassy foods is a must in the beginning too.

The benefits started being really noticeable at the end of the 2nd month for me and continue to make me feel so much better than I have for years.

Good luck.

Blessings,

Re: Tecfidera

Posted: Mon Sep 02, 2013 12:41 pm
by deniseb88
I have been on Tecfidera for over a week and am on the higher dose. So far, so good. After being on Rebif and feeling like I had the flu for the last 8 year of my life, I am enjoying this new drug. The proof will be in how well it controls flares, and that is too early for me to tell. The only side effect I experienced was a feeling similar to swallowing 20 mg of prednisone. Other people have had serious side effects, but I have been fortunate that for me it has not been too bad. I'm finding that many of the symptoms that I blamed on MS were side effect of Rebif, so I am liking this new drug at this point. My only problem at this time is a rotten cold, but since I teach 450 kids a week, many of whom have been sneezing all over my room, I am not surprised. I'm hoping that this drug does not trash my immune system to the point that I pick up everything that comes my way.

Re: Tecfidera

Posted: Tue Sep 03, 2013 9:27 am
by xpsychiatricmd
I have been on Tecfidera for close to three months. Taking an aspirin full dose an hour or so before helps. My main complaint is sedation.