new side effect.... hair loss

[Tawanda]

Up until today's shower, I figured this was one side-effect I managed to dodge! There was a ton of my precious BROWN strands in the bathroom sink after I towel-dried my hair over it (and if it's going to fall out anyway, why can't it be the grey stuff?!)!

[Tawanda]

I don't know how hair loss cannot be expected to some degree. Anytime you mess with the food source of the human body it will began to survive. And the first to go is hair as it is the least thing needed. And this medicine definitely messes with the gastronical part of our bodies during the transition period. My thought/hope is once our bodies get back into an "it's ok routine" the attack on the hair, nails, etc. will reverse. I know I am drinking as much carrot juice as possible just to help my body with the hair issue during this time.

Look at body builders. When they all start training they have gorgeous hair, but when they get real serious and into competing their hair looks like straw so it gets cuts short. (I use to be a Fitness Trainer). This happens because they screw with the food source of their body.

I think what is missing from the s/e of this medication and all medications that have to be "accepted" is the verbiage "your body has to accept this medication and your body may put up one hell of a fight...or it may not ... like all the lucky common people we choice for the trials." Then they should have to list all the s/e's and not just the common ones.

Very good explanation...i hope you are right about the body adjusting to it eventually (but not so much that it lets MS have a field day!). Lovely pic of you and your hair looks great!

[Sneels]

I have noticed a fair amount of hair loss (on Tecfidera for 8 months now), but not quite as rapidly as I experienced with Gilenya. I mentioned it to my neuro at my last appointment and she was surprised, saying I was the first patient to mention it. I've also noticed my nails beginning to split again, which I had forgotten about but now I remember having that issue with Gilenya as well. I'm taking biotin, but it doesn't seem to help with either issue. I bought some nailtiques nail protein (level 2) when I first had problems with my nails and it really seemed to help so I guess I'll have to start using it again. My hair is very thin to start with, so if this doesn't get better soon I think I'll have to go back to Copaxone. I'd rather have to give myself shots and have a (semi) full head of hair, than take a pill and be bald!!!

[Tawanda]

Downplaying hair loss S/E?

My understanding is yes, it is a s/e.

It's one of the s/e that you have to dig to find. (It'll be listed under "rare" or "extremely uncommon" and in the legal small print on the manufactures website.)

Hair loss is also a s/e of B/interferons - have to dig to find that one too!

As I was cleaning my hair up in the bathroom and pulling loose hairs off my arms, I remembered your post.

If the manufacturer listed hair loss as a big, fat "hairy" (pun intended) side-effect, would any of us gals even go near it?! Guys who aren't already seriously balding would freak on that disclaimer too.

I have muddled through a lot of side-effects to stay on this drug, mainly because I am so thrilled about my psoriasis drying up. HOWEVER, I am monitoring this hair loss thing very carefully now. Not that I've ever had this great head of hair or anything (just the opposite in fact: thin and straight and quickly turning grey), but for me personally, this is a deal-breaker.

[Diamond57]

Hair pieces

Did it get that bad you had to buy a wig or extentions etc... I'm taking Biotin and it's helping some but haven't started treatment yet.

Susie

[Tawanda]

Did it get that bad you had to buy a wig or extentions etc... I'm taking Biotin and it's helping some but haven't started treatment yet.

Susie

No. If it gets to visible bald spots and wigs, I am back to shots. I feel like one more piece of hair and I'm done with TEC, BUT I am praying that this side-effect will taper off. Other side-effects have tapered off...yea!

I looked ay other M.S. sites and heard of women losing enough hair to quit, as that is the cure for their hair loss. Of course you still have that nasty 'ol M.S. to treat no matter what, and TEC has shown so much promise.

Maybe this is a rare side effect and I'm just one of the lucky ones. It did not happen until I was on it a couple months. Now I am getting ready to take a shower and crossing my fingers...

[Diamond57]

Tawanda, I also have a hyper thyroid which has caused me alot of hair loss. My hair stylist has noticed some improvement with biotin. My fear is when I begin rebif that's where maybe I might cut my hair and have it layered. It's long and I try to air dry it because I get so dang exhausted with showering.

Best of luck....
SusieQ

[Tawanda]

P.S.

I just did a quick Google search on "normal" hair loss which is between 50-100 strands (and in some cases as much as 150 strands), so I would be careful before blaming normal shedding on TEC too fast...

[Tide]

Age is also a big factor.

[trevvian]

I mentioned it to my neuro today. His immediate reaction was, "well, I'm glad you listed it as a low priority, because we're not stopping the Tec."
Said he hadn't heard this about Tec, but he'd put it in my chart.

It sucks. It's NOT normal hairloss; for the first couple months it came out & broke off in gobs. Like drain-clogging gobs...way more than 100 strands.

It's growing back, but it's thin, brittle & rough.

For me, it's still not a dealbreaker. I like the no-change MRI.

[Tawanda]

I mentioned it to my neuro today. His immediate reaction was, "well, I'm glad you listed it as a low priority, because we're not stopping the Tec."
Said he hadn't heard this about Tec, but he'd put it in my chart.

It sucks. It's NOT normal hairloss; for the first couple months it came out & broke off in gobs. Like drain-clogging gobs...way more than 100 strands.

It's growing back, but it's thin, brittle & rough.

For me, it's still not a dealbreaker. I like the no-change MRI.

I wonder if my neuro. will feign shock at our next appt. when I mention the hair loss like all of the other neuros. mentioned on this thread? It doesn't sound as if anyone is going bald and wearing wigs like chemo. drugs, so I can see why this wouldn't be a deal-breaker for you.

It is worse never knowing when a GI tract symptom is going to rear it's ugly head. While on Tec. I carried soda crackers with me everywhere (reminded me of when I was preggo!).

[Andrewf802]

I have hair loss

I have hair loss....I've been on Tec for about 10-11 months..
during that time..
I had terrible s/e...hunkered down and kept going
After all this time I still continue to get the itchy flushed sensation
I had thought that once I followed some of the suggestions on this board to continue...I would and did
It worked...wow how cool..
a month or so ago I felt the burn again..
The only thing I can say is that the severity of the flushing
has diminished to a tolerable degree....it last from 5 to 20 minutes...much shorter than when first started
Good luck to all

[Diamond57]

Biotin

@litlbi131....Hi there! I am not on Tecifedra. I am on Rebif and just started my first injection Sat. I'm scared to death of losing more hair and when I SAY more hair it's because I have a hyperthyroid. I used to have long thick hair and lost a TON!!!! Devastaing to say the least.

I have been on 10,000mcg of Biotin. Started out at 5000mcg. It took about 3 months and noticed my hair was less in the shower and my stylist has seen new growth. I'm not saying it's a MIRACLE but definately has helped. I'm even seeing new hair growth in the forehead area. Now, Im just hoping beginning with Rebif I don't lose anymore.

It's worth a try....and my Dr. said it's fine and its helped raising my B levels. I read lots and lots of reviews and it may not work and then again it might. The brand I use is Nature Made you can get at Walmart. I hope if you try you have some luck. Be patient. It was three months until I noticed growth. My stylist also recommended to only wash my hair twice a week. I know how devastating it is and feel for you.
Hope this helps.
My Best......

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

Susie Q

[Diamond57]

Sorry

I didn't realize I posted on this a million times!!! LOL!!! Well the cog fog kicked in!!! HA! @ least I can laugh about it.

Have a great day all!
Miss Cog Fog 2014

[Tawanda]

I didn't realize I posted on this a million times!!!

Hahaha! I have posted a million times too, but it's my haaaaair!!

I went to my best hair dresser last week (45 minute drive each way) and asked for advice. She noticed the thinning and breakage immediately and so we decided to bob it. She is the hair whisperer or something! Between the way she angled it and layered it up the back, my hair looks way thicker. Although I can't duplicate her prowess with the rounded brush, I do alright.

I was already in Biotin before Tec, but got spotty about remembering to take it and probably needed a higher dosage, too. I bought some coconut oil and shower caps for what I hope will be my new weekly conditioning treatment. I also got some new volumizing hair products.

I got Shingles and my neuro. told me to stop Tec about a month ago until things were better. I will probably never go back on the stuff, anyway, but go back to Avonex.

BTW, "WEN" for hair is a nice product. It is pricey, especially for many of us MSers on a fixed income, but this is my hair...and this is war!!

I am still very curious to know if anyone on this thread who is still on their TEC regime has stopped losing hair. How are your bathtub hair traps looking these days ladies? Any improvement? Sending you all good hair day vibes...especially you, Diane!