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Side effects

Posted: Thu May 09, 2013 1:49 pm
by Laino107
Hi all! Started Tecfidera about 10 days ago and wanted to know what side effects everyone is dealing with. I had the heat/bad flushing for a day or two. My main concern is the nausea and stomach pain. My MS dr actually had me cut back to one pill a day to alleviate some of this. Anyone else experience nausea/stomach pain? So hard not to be able to find more info on side effects because the drug is so new. Help!

Diagnosed in 1998

Re: Side effects

Posted: Thu May 09, 2013 2:14 pm
by Loriyas
I'm sorry I can't help you with any information. I have been told the gastrointestinal side effects are transient and usually subside within the first month. Would you keep us updated on your experience with this drug? It would be so appreciated.

Re: Side effects

Posted: Thu May 09, 2013 4:02 pm
by NHE
Laino107 wrote:Hi all! Started Tecfidera about 10 days ago and wanted to know what side effects everyone is dealing with. I had the heat/bad flushing for a day or two. My main concern is the nausea and stomach pain. My MS dr actually had me cut back to one pill a day to alleviate some of this. Anyone else experience nausea/stomach pain? So hard not to be able to find more info on side effects because the drug is so new. Help!

Diagnosed in 1998
Hi Laino,
Welcome to ThisIsMS. The prescribing information for Tecfidera indicates that patients should start out at a 120 mg dose for one week before switching over to the 240 mg dose. http://www.tecfidera.com/tecfidera-pres ... ation.html How did you do on the low dose or did you start out at 240 mg?

NHE

Re: Side effects

Posted: Thu May 09, 2013 4:45 pm
by Laino107
I did start at the prescribed dose of 120 mg twice a day. After day 3 the MS specialist told me to cut it back to once a day for the remaining 4 days to lessen the side effects. I am still dealing with the nausea and stomach pain, so I'm waiting to hear back from the doc to see what she recommends next.

Re: Side effects

Posted: Thu May 09, 2013 4:46 pm
by Laino107
Thanks Lori, I will certainly keep you posted :)

Re: Side effects

Posted: Fri May 10, 2013 9:08 am
by KDGO
Thanks everyone for posting your experience with Tecfidera. I am also most interested in how this drug will help with MS progression and symptoms.

Re: Side effects

Posted: Fri May 10, 2013 7:06 pm
by betsy30327
I started Tecfidera 10 days ago but could not tolerate twice per day dose. Nausea, upper abdominal pain and watery diarrhea. I just started the 240 mg today and taking active probiotics daily and Immodium every 8 hours. Capsules are really huge and wonder if Biogen knows that some of us have a difficult time swallowing. Would rather have smaller capsules. I'm hoping my body will adjust....two months of this would be really tough.

Anyone else having these symptoms?

Thanks,
Betsy

Re: Side effects

Posted: Sat May 11, 2013 10:08 pm
by Laino107
Hey Betsy I was wondering how u are doing. I'm up in the middle of the night with unbearable itching all over. I mean itching that I am scratching so much I know I'm gonna leave marks. My skin is so read and burning! I had this on day one, then yesterday and now today. I just took a Benadryl, waiting for if to work. Did this ever happen to you?

Re: Side effects

Posted: Sun May 12, 2013 5:12 am
by betsy30327
I strongly suggest you call your physician. I have just experienced mild itching. Your reaction may indicate an allergy.

Re: Side effects

Posted: Sun May 12, 2013 8:20 am
by lyndacarol
Laino – Look into checking the liver; itching often can be a symptom of a problem there.

Re: Side effects

Posted: Wed May 15, 2013 2:24 pm
by MarketingMaven
I'm in week 4 - no stomach problems, but still experiencing flushing of face, neck and arms, intensity varies quite a bit day to day.

Re: Side effects

Posted: Fri May 17, 2013 4:55 pm
by KClay
I am on week three. I have had flushing twice. The worst is abdominal pain, watery diarrhea.
I think I had an MS flair that started about the time I started Tecfidera. Woke up extremely dizzy one morning. Stumbled around the house trying to get dressed. This is a new problem for me. After about ten days, I am still somewhat dizzy, but it is much better. Today I actually feel almost normal again. It was hard to know if the nausea was meds or the dizziness. However, the abdominal pain/diarrhea was meds for sure. I hope it doesn't last long. I was on Avonex for four years and the side effects never lessened at all. Thanks for all posting. Maybe we can get this new drug figured out!

Re: Side effects

Posted: Mon May 20, 2013 4:45 am
by mikro
MarketingMaven wrote:I'm in week 4 - no stomach problems, but still experiencing flushing of face, neck and arms, intensity varies quite a bit day to day.
Same here but I've started with a lower dose. I still have flushing of face, neck and arms every second time. After 30 minutes it's nearly away. I had some watery diarrhea but not very disturbing.

I take it right before breakfast on an empty stomach and that's where the side effects are the most. I eat several times per day and have less side effects when taking it later the day.

Re: Side effects

Posted: Tue May 21, 2013 2:36 pm
by kromer
Hi! I just started on this new med this week, so I am still on the lower dose. I am extremely happy. I have been struggling with flulike symptoms with Avonex, and I have felt much better. I have experienced one flushing episode with my morning dose. I am thinking it might be better to eat first before taking. I also was automatically signed up for copayment help, so my cost has gone from 100 to 10 dollars/month. Hope others have good experience with this drug.

Re: Side effects

Posted: Tue May 21, 2013 10:55 pm
by mikro
kromer wrote:I am thinking it might be better to eat first before taking.
I'm not sure if that's a good idea. The capsules are treated to be resistant to stomach acid. If you eat before they can't pass the stomach fast enough the reach the enteric where it should be effective. So you would probably don't get the full effect.

I can imagine that it has much lower side effects than Avonex. I was on Rebif years ago but only for a short time as the side effects were unacceptable.