Major hair loss - help

[Andy75]

Me too!

I have been on Tecfidera for six months and am experiencing major hair loss and thinning.

Last week when I went to the hairdresser, she was shocked and hesitant to do my hair.

I had my thyroid functioning checked to see if that was the cause of the change in my hair. Nope! My doctor said that my labs were fine.

I am going to try Biotin to see if it will help.

[Cbader1]

Serious hair loss

I too have seen three quarters of my hair gone...talk about depression! Knee jerk reaction...stopped the tec..but looking at the possible side effects of gilenya, which was my Neuro's next option...I started the tec again...my hair loss is very noticeable though I wear it up always...the gilenya listed hair loss as a side effect too....OMG...at this point...with everything else I endure...the intense burning and pain, the ms fog, the occasional inability to pee...the tripping, the blurry vision...there are very few positives for me...and yet, I know this could be much, much, worse...but MY HAIR...OMG..I CANNOT DEAL WITH THIS! I don't sleep...sitting in my chair by 4:30 am...crying, having looked into the mirror...sooooo depressed!

[Tawanda]

Hair update

Ever since I ditched Tec, my hair started growing back in. You can really see in pictures how the top of my hair is smooth and shiny (even though I have greys I haven't done a ting about) and the hair growth during the TEC months is fried like the blonde guy's hair in "Dumb and Dumber". I wanted my hair shoulder length because it is so much easier to throw it up and get out the door (especially for the gym where there is no way to make a short, pin straight haircut look good). Wow did that drug wreaked havoc on my fine hair. I am staring the paperwork for Plegridy and will work on securing that after XMas. I think.

[milehighmimi]

I started Tec on 10/22/14. I was diagnosed in Jan. 2014 and first put on Copaxone. I relapsed July after switching to the 40 mg shots so my neuro put on on Tec.

I'm post menopausal and I have the irritating issue of getting a few coarse facial hairs now. Before starting Tec, I was always able to pluck those 3 hairs with tweezers. Now I notice when I try to pluck the hairs, they just break off! Seriously irritating because I can still feel them even if I try using a razor. I've also noticed a lot of hair coming out when I shampoo, I don't think it's falling out, I think it's breaking off like my facial hair. I'm supposed to get a Keratin blowout next week (I'm too fatigued to blow dry and straighten my hair), now I'm scared to get it done. I got a Groupon special for $99 too, usually non-refundable...oh boy...not sure what to do since I just started my 3rd month, but I do not want to lose my hair unless I'm approved for a stem cell transplant clinical trial! I'm calling Biogen tomorrow, I already don't like taking this crap, but haven't really had the other crappy side affects. This is one I can't handle!

[Tawanda]

I started Tec on 10/22/14. I was diagnosed in Jan. 2014 and first put on Copaxone. I relapsed July after switching to the 40 mg shots so my neuro put on on Tec.

I'm post menopausal and I have the irritating issue of getting a few coarse facial hairs now. Before starting Tec, I was always able to pluck those 3 hairs with tweezers. Now I notice when I try to pluck the hairs, they just break off! Seriously irritating because I can still feel them even if I try using a razor. I've also noticed a lot of hair coming out when I shampoo, I don't think it's falling out, I think it's breaking off like my facial hair. I'm supposed to get a Keratin blowout next week (I'm too fatigued to blow dry and straighten my hair), now I'm scared to get it done. I got a Groupon special for $99 too, usually non-refundable...oh boy...not sure what to do since I just started my 3rd month, but I do not want to lose my hair unless I'm approved for a stem cell transplant clinical trial! I'm calling Biogen tomorrow, I already don't like taking this crap, but haven't really had the other crappy side affects. This is one I can't handle!

I honestly don't know if the hair was breaking, falling out, or both while I was on Tec. All I know is that my husband had to take the pipe apart under the bathroom sink and it was clogged with my hair from the Tecfidera months. . As for facial hairs, use wax strips (but only when you can hang around the house until the redness on your face goes away!).

Please do call Biogen. I did, and they were like "What? You are the only who ever experienced this!" My feeling is that women in particular see this as such a horrible side-effect that they wouldn't even consider trying Tecfidera if the truth about the hair loss was known to them. I doubt Biogen wants to shout it off the roof, let alone cop to this side-effect unless more of us report it. Additionally, the hair loss isn't something you would notice right away (like the flushing, acid reflux, dripping nose, etc.).

[Afoo]

I too have experienced hair loss. not sure how much longer i should "ignore" it until I do something! My hair is extremely thin now after three months of Tec. I will definetly report to Biogen.

[Temagami]

I was experiencing hair loss with Gilenya. Recently started taking 500 mg of B3 in the form of niacinamide from nowfoods. The loss is now decreased by at least half. I am actually amazed each morning in the shower at how little hair is on the drain and my hair is done being combed out. Who knows, maybe the B3 would work for folks on Tec as well.

[laurasari]

I thought Gilenya was known for hair loss. My Neuro always asked me but. I had more hair loss on Tec my husband even noticed it.
Good luck
Laurie

[TerriW]

So happy I found this forum and thrilled to read that hair grows back if you stop taking Tecfidera. I was only on it 2 1/2 months and the hair loss was crazy. I could feel it falling out and see it in shower, emptied my brush of hair every time I used it. After reading that other Tec users (on this site) experienced d this side effect, I stopped taking it 4 days ago. My neurologist denied hair loss being a side effect but after getting my thyroid checked (it was fine), I spoke with a rep of the company and she advised that hair loss is not common therefore not listed but she has heard from some users that they have experienced hair loss. She couldn't tell me if it would grow back. Thank you for your comments -- you made my day!