Tecfidera side effects- shew!

[LHardy]

Hi all! I am new to this forum and was diagnosed with RRMS in 2011. I was young and really didn't care for my disease as well as I should have. I took my shots(Extavia) for a number of years and ate pretty well. Jump ahead to 2017, I relapsed(second one) in January. I asked my Neuro if I could try Tecfidera. He said ok. Just started it about a month ago and BOY it's been rough. First, came the flushing. Managed that. Second, was the GI issues( I don't even know if "issues" is the right way to explain) I was laid up in the bed for days. Terrible. Now, that all that has subsided. I get to deal with acne- perfect, right?! I have been web searching for weeks on Tec just to come up empty handed on anyone saying that symptoms got better or stayed the same. I go back to my neuro next month and would love to discuss switching, but I wanna make sure that there is an actual reason to. More or less why I decided to join a forum.

Any guidance is MUCH appreciated.

[REG53]

Hello LHardy and welcome to msw. I have been on tec. for about 4.5 yrs. I guess I was one of the lucky ones, the only GI issues I had was a low grad stomach ache. I still get flushing once and awhile. Search the tec. forum for GI and you will find tons of infor.

Just wanted to add I've had some progression while on tec so I am waiting for Ocrelizumab to be approved, hopefully by the year of this month.

Hope you feel better and find some answers.

[jreagan70]

Hi LHardy:

Tecfidera has shown to have significant side effects. As sometimes happens, the true side effect profile of a drug doesn't become evident until it's out in the marketplace in wide usage. Tecfidera's side effects have caused sales to drop significantly. That caused the manufacturer to run an ad campaign last year, which really wasn't a way to increase sales (although it might have worked in a small market on a few people like you ) but was more just public relations to appease stockholders.

Besides the flushing and GI issues, a lot of people were sidelined by extreme fatigue and impairment in overall function, such as increased difficulty walking, which is what they were taking the med for to try to prevent from being caused by MS.

Tecfidera seems to work acceptably well for the people who don't develop severe side effects and/or can tolerate them. But the dropout rate for Tecfidera is significant. So it's no surprise that you're having difficulty with side effects. That dropout rate is a good indication that the side effects don't get better for a lot of people.

In comparison, I haven't seen anywhere near the amount of complaints on MS boards about Gilenya or Aubagio (approved for MS) or Rituxan (off label). You might want to think about switching to Ocrelizumab when it becomes available.

[LHardy]

Thank you! I really appreciate the all the info.

My side effects have subsided (with preparations before hand) I will keep with it for a bit longer and see what happens. At least until 2020

Hi LHardy:

Tecfidera has shown to have significant side effects. As sometimes happens, the true side effect profile of a drug doesn't become evident until it's out in the marketplace in wide usage. Tecfidera's side effects have caused sales to drop significantly. That caused the manufacturer to run an ad campaign last year, which really wasn't a way to increase sales (although it might have worked in a small market on a few people like you ) but was more just public relations to appease stockholders.

Besides the flushing and GI issues, a lot of people were sidelined by extreme fatigue and impairment in overall function, such as increased difficulty walking, which is what they were taking the med for to try to prevent from being caused by MS.

Tecfidera seems to work acceptably well for the people who don't develop severe side effects and/or can tolerate them. But the dropout rate for Tecfidera is significant. So it's no surprise that you're having difficulty with side effects. That dropout rate is a good indication that the side effects don't get better for a lot of people.

In comparison, I haven't seen anywhere near the amount of complaints on MS boards about Gilenya or Aubagio (approved for MS) or Rituxan (off label). You might want to think about switching to Ocrelizumab when it becomes available.

[LHardy]

Thank you for this.

I honestly thought that people just stopped taking it after 2013. It's so good to know that people are doing OK I am feeling better. Thanks to preparations before taking it

So, have you had any stiffness? I have stiffness always and take ampyra for that, but I have noticed a bit of "extra" stiffness.

Hello LHardy and welcome to msw. I have been on tec. for about 4.5 yrs. I guess I was one of the lucky ones, the only GI issues I had was a low grad stomach ache. I still get flushing once and awhile. Search the tec. forum for GI and you will find tons of infor.

Just wanted to add I've had some progression while on tec so I am waiting for Ocrelizumab to be approved, hopefully by the year of this month.

Hope you feel better and find some answers.

[REG53]

I'm glad you are feeling better. No I haven't experience a lot of stiffness.