...and now...the hair loss...

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...and now...the hair loss...

Postby sh8un » Thu Jul 06, 2006 3:18 pm

Well...I guess I can not deny it anymore...I am loosing my hair. I think it is because of the Avonex but my Dr. wants to run some tests. I am not sure what to hope for. Do I want it to be Avonex which I THINK is helping me or do I want it to be something else???? What would I pick? This is going to be really vain but I love my hair. I always complained that I had too much but I just meant that I wanted the hair dresser to thin it. I did not actually want it to fall off of my head. I also love my eyes and b/c ON I am afraid that I will lose my vision in that eye too.
I would like there to be someone or something that I could blame for all of this. I also would like to tell him/her that I will no longer complain about what I have been given and that I love me the way I am. I will never say that my hair is too thick, or that I don't have enough eyelashes, or that my eyes are not slanted the ritgh way. PLease stop taking the things that I love. Sorry...it has been a bad day and I just feel like if I say those things loud enough that whatever is to blame for this stupid disease might hear me and realize that I have learned my lesson. I am well aware that you ppl who don't know may think I am crazy but I hope I am not. I am a control freak who is loosing her grip. That’s my excuse and I am sticking to it.
NN
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hair loss

Postby jimmylegs » Thu Jul 06, 2006 8:17 pm

hey s

if i could give you replacement hairs i would! i read that hair loss (alopecia) was reported in very very few avonex takers but it wasn't entirely non-existent! and also i read that the effect is reversible if you stop the treatment. have you researched other treatment options? is avonex your first type of treatment or do you have experience with others?

to help your hair regrow you may want to consider a full spectrum vitamin e supplement with all four tocopherols and the four tocotrienols also.

to digress, i just read that vitamin c can produce interferon in vitro! weird.
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Postby sh8un » Fri Jul 07, 2006 11:32 am

Hi J,
You are funny. I knew I could count on you for info. I thought that vit C was the cause of my MS but now this info. changes everyting. I went to my family Dr. today and he said that it could just be d/t stress. I have had some of that lately. When he pulled on my hair, the hairs that would come out did not have roots. meaning that they were just breaking off. He ordered a bunch of blood tests anyway to rule out other things. I always get worried when they order ESR but that's there too. My Dr. said that it would take 2 years for me to notice my hair being back to its original amount. I don't really care. I just want it to come back.
Thanx for offering me some hair :lol: hope you are blonde. I always wanted highlights.
It was just raelly hard b/c I thought that it might have to stop Avonex and since things are kind of calm right now, that thought really freaked me out. Not raelly sure what Avonex is doing but I don't want to change anything right now. I will read inot your sugesstions.
Thanx,
NN
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Postby jimmylegs » Sun Jul 09, 2006 6:03 pm

hi s yes i'm blonde haha, highlights are on their way ;)

that's great that your doc ordered some tests. do you know which ones? not my business - i'm just curious. are they examining the hair itself too? that could be a pretty interesting addition to the bloodwork.

i don't think i've seen esr on my requisitions before, that's an inflammation indicator i gather? i just got the elevated proteins and oligoclonal band thingies in the csf. boo!

here's a more general blurb i found on hair nutrition:

Healthy Hair Vitamins

Vitamin A - Antioxidant that helps produce healthy sebum in the scalp. Food sources: Fish liver oil, meat, milk, cheese, eggs, spinach, broccoli, cabbage, carrots, apricots and peaches. Daily Dose: 5,000 IU.
Warnings: More than 25,000 IU daily is toxic and can cause hair loss and other serious health problems.

Vitamin C - Antioxidant that helps maintain skin & hair health. Food sources: Citrus fruits, strawberries, kiwi, cantaloupe, pineapple, tomatoes, green peppers, potatoes and dark green vegetables. Daily Dose: 60 mg.

Vitamin E - Antioxidant that enhances scalp circulation. Food sources: Cold-pressed vegetable oils, wheat germ oil, soybeans, raw seeds and nuts, dried beans, and leafy green vegetables. Daily dose: Up to 400 IU. Warnings: Can raise blood pressure and reduce blood clotting. People taking high blood pressure medication or anticoagulants should check with their doctors before taking Vitamin E supplements.

Biotin - Helps produce keratin, may prevent graying and hair loss. Food sources: Brewer's yeast, whole grains, egg yolks, liver, rice and milk. Daily dose: 150-300 mcg.

Inositol - Keeps hair follicles healthy at the cellular level. Food sources: Whole grains, brewer's yeast, liver and citrus fruits. Daily Dose: Up to 600 mg.

Niacin (Vitamin B3) - Promotes scalp circulation. Food sources: Brewer's yeast, wheat germ, fish, chicken, turkey and meat. Daily dose: 15 mg. Warnings: Taking more than 25 mg a day can result in "niacin flush" - a temporary heat sensation due to blood cell dialiation.

Pantothenic Acid (Vitamin B5) - Prevents graying and hair loss. Food sources: Whole grain cereals, brewer's yeast, organ meats and egg yolks. Daily dose: 4-7 mg.

Vitamin B6 - Prevents hair loss, helps create melanin, which gives hair its color. Food sources: Brewer's yeast, liver, whole grain cereals, vegetables, organ meats and egg yolk. Daily dose: 1.6 mg. Warnings: High doses can cause numbness in hands and feet.

Vitamin B12 - Prevents hair loss. Food sources: Chicken, fish, eggs and milk. Daily dose: 2 mg. (jimmy comment - 2mg looks like maybe a typo! i megadose 1mg per day, maybe they meant 2 mcg?)

so, basically this looks to me like a b-complex with inositol and biotin, plus a chewable antioxidant including a and c would help. which i imagine you already take! or something similar.

i found a number of article titles linking interferon and alopecia but they don't have abstracts :( sorry ... so i can't figure out any potentially implicated mechanisms in hair health.

anyway best of luck, i will always picture you with beautiful highlights from now on :D
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Postby sh8un » Mon Jul 10, 2006 10:51 am

HI J,
Are you not on vacation girl? Thanx so much for all that great info? It always makes me smile how much info you have. ESR is for inflammation. They also ordered Thyroid workup b/c that would be the other biggest thing to look at. I think it'll come back normal though. Also some liver and complete blood count and protein levels and cholesterol. Some of it is b/c I have not had blood work done for a while. I know last time they checked my b12 that it was elevated. Yeah...that's all for now.
THanx again
I will keep you updated.
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Hair loss

Postby lyndacarol » Mon Jul 10, 2006 4:14 pm

Although I don't know exactly what this means, perhaps it indicates that vitamin D has a connection to some hair loss, which I also had for a while.

From the work by Reinhold Vieth, first posted by Nick on Regimens, Mega D: "Vitamin D nutrition probably affects health beyond just bone. The mechanisms involved in mediating the non-classic (i.e., non-bone) effects of vitamin D are probably through 1,25(OH)2D produced locally, using circulating 25(OH)D as the substrate. Many tissues possess 25(OH)D-1 -alpha-hydroxylase, including the skin (basal keratinocytes, and hair follicles), lymph nodes (granulomata), pancreas (islets), adrenal medulla, brain, pancreas, and colon (19). An even wider range of tissues possess receptors for 1,25(OH) 2D (VDR) (20)."
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Postby sh8un » Mon Jul 10, 2006 11:06 pm

Hi Lyndacarol
Thanx for the post. The thing is that I hvae been taking 1000IU of vit. D since April. Sometimes I even take 2000IU. Who knows what's causing it? Hopefully it's just stress. That's what I hope for. That I have that much stress that my hair is actually falling out. I always thought that was a joke :P Well...ha ha ha...
I am hoping that my tests come back normal. Then I will wait and see if it settles down or not. IF it gets really bad I will just have to switch to Rebif I guess. That's my plan for now.
NN
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Re: ...and now...the hair loss...

Postby NHE » Fri Jul 14, 2006 12:32 am

Sh8un wrote:IF it gets really bad I will just have to switch to Rebif I guess. That's my plan for now.

I'm not sure how switching from Rebif will help. Both Rebif and Avonex are interferon-beta1a. Only the dosage and the injection method differ, subcutaneous vs. intramuscular respectively. With respect to dosage, I've been told by a nurse that the absorption of a drug given by subcutaneous injection is around 40% while a the absorption of a drug given by intramuscular injection is around 80%. This difference may help to offset some of the difference in dosage between the two. Anyways, here's a link to the Prescribing Information for Rebif. I didn't see any mention of alopecia in the listed side effects, but I still can't see why it wouldn't be a potential problem.

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downtime

Postby jimmylegs » Fri Jul 14, 2006 1:40 am

hey sh8, no prob :) yes i'm on vacay that's why i have so much time to do nothing but post to thisisms hahaha ;)
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Postby sh8un » Fri Jul 14, 2006 2:19 pm

Well I think that the RN that I am dealing with right now is pretty retarded. She did not even know about the 4% of the pt reporting hair loss in the clinical trials. My blood tests came back "pretty normal." I am not sure what that means and will be requesting a copy of it. My Neuro. is on vacation and so the RN suggested I contact a clinic in a different city. She is just nuts. In her defense though I guess she is new at her job and that doesn't help me at all. I am sure she is trying her best. She is also trying to get me in contact with whoever is covering for my neuro. Which I thought was pretty smart of her. Somehow I don't think that I will be #1 on that DR.'s list of problems. I am sure there are far worse things that are happing in his pt's lives. I was also in contact with Biogen (yes, I know...not the best ppl to talk to about side effectsof the greatest drug known to man kind) and they said that other than 4% in the clinical trials, they had not really heard much about hair loss with Avonex. Which I guess could be true. Women hate hair loss. So...now I guess I will go back to my family Dr. who seems to be the only one left in town and see if he really thinks it's from stress. I have to say that I have been pretty stressed out and I am really hoping that stress in the cause. I also found this website http://www.aafp.org/afp/20030701/93.html for all of y ou who are interested. I think I am going to have diagnose myself and...if you are ready, i will share with you my diagnosis...I think and hope that I have Telogen effluvium. Which is either d/t stress or syphilis. So, I may be loosing more hair waiting about 2 years to see if my hair will regrow to rule out syphilis. I think I am going to be a Dr. at the end of all of this. I really don't think I have syphilis b/c…well…it’s just not possible. I will look into though. Gross. :?
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Postby jimmylegs » Fri Jul 14, 2006 7:25 pm

sh8: have u ever been this stressed before? did u notice any hair loss then? don't u hate it when it's like pulling teeth to get details of your own bloodwork. grr
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Postby sh8un » Sat Jul 15, 2006 12:46 am

First of all missy, it's Sh8un. Without the "un" it sounds like something not so nice :x . I should have thought that before I used this name on a non Persian site. :twisted: Yes...I really hate the fact that no one will just come out and say whatever the hell is wrong with you. No...I have never been this stressed in my life. This diagnosis has been, by far, the worst thing that has happened to me. It's been really hard as I am sure it would be for anyone having to be diagnosed with something like this. IT sucks.
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hair loss

Postby harvey » Sat Jul 15, 2006 2:56 am

hi im new to this and been checking out the post for a while
i was diognosed about 5 years ago but have hade ms since 98 when i had fisrt big onset thing when that had subsided i noticed my hair was falling out it was everywhere my gp thought i was astressd out mum as they do but it was about a year before it was back to normal it got so thin my mum asked me if their was anything she could do and i jokingly said please buy me a wig. Anyhow and have been expieriencing hair loss at the moment and hopefully it will just fizzle out like the last time i really think that this is linked to ms i dont know how or why but im sure it is
sh8un i hope it sorts itself out soon i know its really distrssing but hang in there takesare
tracy
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oopsie!!

Postby jimmylegs » Sat Jul 15, 2006 5:37 am

sorry sh8UN lol i was kind of doing the kathryn to kate thing hehehe
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Postby sh8un » Sat Jul 15, 2006 10:08 am

thanx Tracy...I hope it will stop soon too. I did have a lot of hair and at the moment it is only noticable to me. We'll have to wait and see I guess.

J, you see what I mean??? YOu have to include the "un." LOL :lol:
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