Major hair loss - Help

[lawnerd]

Hi!

Longtime no post. Been on Tecfidera for about a year. All going seemingly well, except hair loss is so significant I can no longer pretend it is not happening.

Was already taking 5000 mcg Biotin. I have just started a hair growth pill with additional Biotin, Vits A & C, silica, collagen, zinc,copper & calcium.

Rogaine literature indicates it is only for people with family hx of hair loss.

Anyone have any information to share on this subject?

I can't take other Orals for various reasons. Was on B for 10 yrs. I have significant scars and scar tissue from inj site reactions & can never take an injectable again.

Doc doesn't know what to do. I am scared I will need a wig soon if I can't reverse this hair loss.

Thanks much in advance for whatever wisdom you have to share!

lawnerd

[agate]

Hi lawnerd,
Nice to hear from you again.

Though I haven't tried Tecfidera, I'm fairly sure that hair loss is not among the reported adverse reactions:

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It's possible that your hair loss has no connection with the Tecfidera. I suppose you could stop the Tecfidera for a while and see if the hair loss stops.

This may not be much comfort, but they're making attractive, easy-care wigs nowadays.

I'm sorry I can't be more helpful.

[Cherie]

Please ask your doc to do a thyroid panel thyriod problems are probably the number one cause of hair loss in women and as Agate said, it is not one of the listed side effects of Tecficera. When My hair was thinning badly on an Interferon, my stylist suggested Nioxin shampoo. It did help thicken a bit and seemed to slow the loss. I would not stop the tecfidera without first consulting your doc to see if s/he agrees with that plan.

[Lazarus]

Hello old friend...
You have gotten good advice so far. Don't assume a cause and effect relationship. You might be missing the real cause.
Besides, many of my friends have chosen to go bald and they look beautiful.
Men do it all the time and look really good.

I am sure you must be upset...perhaps someone else will come along with more experience than I have.
I am still on rituxan and doing really well. How die you end up on Tecfidora? Has it been helping?

[Earth Mother 2 Angels]

((((((lawnerd)))))) ~

In addition to having your thyroid checked, you might also ask your doctor to do a CBC and a complete metabolic panel. Of particular interest: hemoglobin and iron (anemia), as well as your hormone levels (estrogen, progesterone, and testosterone).

Hope you can determine the cause and remedy it.

Love & Light,

Rose

[renee]

Lawnerd-
Are you experiencing hair loss solely on your head or is it happening elsewhere?
Could make a difference.
My best.
-r

[jendie]

I lost a lot of hair when I turned 40, my second husband filed for divorce and just left that hanging, along with him using our son as a weapon. It was finalized 2 years later. Stress can also cause hair loss. The Nioxin suggestion is a good one. My mom is a licensed hair stylist and she is the one who suggested Nioxin to me. First when I was getting the Novantrone treatment... bleh, chemo.

[lawnerd]

Hi, Thanks to all of you for your thoughtful replies. Even if you don't come up with a "cure" for me, it has made me feel good to hear from so many of you that I remember going back thru the years.

I feel like my posts tend to be too long. Thus, I didn't include a lot of background which I knew to be significant. Let me try to fill in the blanks - briefly . . .

Just had CBC and complete metabolic panel. All very good, best ever in some respects.
+ cholesterol: HDL 55 [best ever] LDL 47 [heart attack in '05]
+ fasting glucose - 87
+ liver and kidney function #'s all good
+ hemoglobin - 14+ [can't recall exact. Was borderline low in May. Been taking iron since then.
+ Think I had thyroid tests in May and all OK [I am going to look back to be sure I did have those tests in May.]
+ BP - normal [I have bad Reynauds and take meds. Had gotten too low, but back in "OK" range which is probably going to cause me problems as weather gets cooler.
+ weight - even that was "good", back in triple digits, barely, but 3 digits. [Wt has been creeping down for years now, no one can say why and docs don't seem to much care unless I mention it or it gets below 100

Time-wise - Tec seems to fit cause/effect. It was/is the "last" thing I want to be the cause b/c I know of no reasonable alternative.

Best I can tell I am only having hair loss on my head. In fact, my fingernails are growing better/faster than seemed like they were doing say 6 mos ago. But I think fingernails getting "bad" relates to the Renyauds and winter.

I know hair loss is not listed as a side effect of Tec. But I have seen some posts at MSWorld from others who think Tec causing hair loss, including a couple who stopped the Tec and hair loss stopped.

My GP has told me to get info about local rep for Tec and give it to his office so he can make appointment for "us" with them. Don't hold out much hope there. I expect, at best, we will fill out some FDA report and become a number for someone's statistics.

My long-time neuro has moved away [to other side of country] again. I am to see new doc in old neuro's office next month, suppose to be good with MS but I don't want to wait til then and don't see point of trying to get his attention by phone sight-unseen or even after/at 1st office visit.

I am not quitting the Tec. For various medical reasons, I can't take any of the other DMDs. I was off all DMDs for about a year during 2012-13 while waiting for chronic wounds at B inj site reactions to heal. MRI I had right before I started the Tec was not good. MRI I had about 6 most after I started Tec was stable again.

I will ask GP about hormone tests when I get back in touch with his office. I have felt rather hormone-less for several yrs - age 58. I have some topical estrogen but have pretty much quit using it b/c not covered by new Obamacare ins and very $$. I have intended to start using it again b4 I go for a gyno check up. With heart attack history, I am not sure taking hormones for hair will be recommended even if my levels are low/out of whack.

I will look into the Nioxin, seems like I used it years ago for some reason that I can't recall.

Hair loss is getting obvious. Person at Doc's ofc that I hadn't seen in awhile mentioned that I looked different and asked what I was doing differently. When I said I was there about hair loss, she said, with an apology, that she thought that was the difference.

As awful as wearing a wig would be from vanity stand-point, there is another issue for me. My having MS is only known by a few people. For professional reasons, good idea for me to keep my MS a secret. Likewise, lying and saying stress is the cause would not be good professionally. Not sure what I will do or say.

Thanks again for all of your ideas and your support. I hope all of you are continuing to do well. [I was sad to see Cat's recent post.]
lawnerd

[agate]

lawnerd, your concern is understandable. Nobody wants hair loss unless it's stylish to be bald (and it is, at least for men, in recent years). Nobody would need to know you're wearing a wig, however. They're making them so well now that they look very natural. I don't see how wearing a wig, even if people knew you were wearing it, would be a giveaway for your MS. Many people wear wigs for a whole variety of reasons.

I was wearing one for a while some years ago just because my hair was in an impossible state and I didn't want to bother getting it professionally "done."

I'd be far more inclined to go with the wig than with any hair-growth products.

Another solution might be to wear a small cap. I've seen quite a few people doing this. There are some very unusual and nice-looking ones.

Jendie, you're so right about stress. And it sounds as if you had major stress going on.

[Virginia]

Hi Lawnerd,

I can't add much to what is being said, but I am going through some of that myself. I had such thick hair that it is hard not to recognize it. It seems every time I start a new medication the hair loss starts. Also, I am hypothyroid which will definitely do it in some people. I haven't tried the Nioxin, but that may be something for me to try also.

I did have a wig at one time (not because my hair was that thin at the time) because I just wanted to have something fast and simple when I didn't feel like doing my hair. It was alright for awhile, but I found even the most comfortable ones to be not so comfortable after having them on for a number of hours. That varies with individuals. However, I know that like Agate said, there are some that you absolutely can not tell.

Mostly, I just wanted to say hello to you and if you find an answer to this problem please let all of us know.

[lawnerd]

Agate, thanks but . . . In my life, I wouldn't have a wig on for an hour without having to start fielding questions. That would only be the people close enough and/or with the nerve to ask me directly. The other people would be asking friends of mine about it. If for not other reason, people would ask out of concern that I have cancer. I would have to come up with a cover story.

No, a wig does not = MS. However, in my world, it does = some problem.

As far as wearing a wig, I have some concern that wearing a wig can't be good for scalp health which could contribute to the problem. Also, close friends who have been thru chemo recently all say that their wigs are uncomfortable and hot and they have had very nice, expensive wigs.

Just can't see myself going there. But then, I know better than to say "never".

Called Tec folks at MS Active Source today. The man acted like they have never had such a report. He said he will have drug rep contact my doc [my doc wanted me to get info so his office could initiate the contact, but Active Source wouldn't give me that info.] I will follow up with my doc next week if I haven't heard from him.

Thanks for everyone's expressions of concern and ideas,
lawnerd

[keiranphillips]

Hi Lawnard, wondering if the hair loss stopped when you quit tecfidera? My wife has just stopped taking it because of the hair loss. Hopefully this will stop it falling out.
All the best
Keiran

[Sunshine]

Wow.
Just because Active Source says no one hasn't reported hair loss, doesn't mean they're telling you the truth. They said same thing to me when I had side effects, and other people told me they called in same side effect concern.

[Sunshine]

Hi Lawnard, wondering if the hair loss stopped when you quit tecfidera? My wife has just stopped taking it because of the hair loss. Hopefully this will stop it falling out.
All the best
Keiran

Welcome Keiran

[agate]

Hi Lawnard, wondering if the hair loss stopped when you quit tecfidera? My wife has just stopped taking it because of the hair loss. Hopefully this will stop it falling out.
All the best
Keiran

Welcome, keiranphillips!


I hope lawnerd will be here to reply.