Help Severe Hair Loss

vernb2 · Posted: Thu Nov 30, 2006 1:40 am Post subject:

I was diagnosed in June....and my hair has continued to fall out...I tried the Nioxin and it did dry my hair out too...and I really dont see that it works. I have been on Paquinil only and my hair still falls out. I have come to the conclussion that my hair has suffered trauma and will fall out...new hair is growing in but not at the same rate. I got a teasing comb and I tease the very thin bald spots to cover it....It will end when it ends and thats all I know.
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In the depths of winter, I finally learned that there was in me an invincible summer.

christina · Sea Monkey Joined: 31 Jul 2006 Posts: 12

I don't believe the hairloss is from any of the drugs. I found out I had lupus by going to the dr.BECAUSE my hair was falling out. I was sent to a dermatologist who gave me cortizone shots in my scalp to re-stimulate the hair folicles to grow. My insurance covered it as any other dermatology appt. and after about a month and a half it started working. For a brief moment it started to fall out again but just enough to scare me. It started to grow back again before I had more bald patches.This was 2 1/2 years ago; I still have thin hair but no more bald patches!
If you are still having no luck try going to a dermatologist.
Good luck. Hang in there.

vernb2 · Posted: Thu Nov 30, 2006 11:43 am Post subject: thanks Christina

Thanks I see a derm...he is the one that diganosed me (I was mistakenly treated for thyroid for over a year) the derm gave me drops for my scalp which havent worked. I go back to see him 12/11 ...up till now he has blamed everything including my lack of response to Paquinil on the fact that I smoke. I am please to tell him shut up when i see him because by then I will be smoke free for almost two months. Laughing

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In the depths of winter, I finally learned that there was in me an invincible summer.

christina · Sea Monkey Joined: 31 Jul 2006 Posts: 12

maybe you should try a new derm if he is not going to look beyond your smoking. I don't smoke but if he isn't willing to think of other methods because of it, get a second opinion. My derm also gave me some topical stuff to use along with the injections-kind of like a mousse-but i never did use it. The shots seemed to be the quickest results from what I have read of others efforts. Good luck and Congradulations on quitting smoking. In the long run you will feel Great!

vernb2 · Posted: Thu Nov 30, 2006 12:37 pm Post subject:

Well I just switched PCP's and today was my first visit with her...I expressed my frustration...I have another dermatological skin disorder which is NOT lupus related and the derm has been less than helpful on THAT issue as well...but he is supposed to be THE best in my area. So my new doc todaysuggested I go to the derm on the 11th and see if now that I have quit smoking he is "more helpful" if I do not feel better about this visit then I she will find me someone else ....
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In the depths of winter, I finally learned that there was in me an invincible summer.

Missy · Posted: Fri Dec 01, 2006 6:43 am Post subject:

I love this! "In the depths of winter, I finally learned that there was in me an invincible summer." Thanks!

I think maybe the Prednisone played into my hair loss, but really I think it was just my kidneys going bad. Now that I'm a bit better my hair is not as dull and it did grow back in, though I never had bald patches, only thinned a lot. The Nioxin didn't work for me, but kudos to those of you who have found success. I, too, cut my hair short (though I had done it before and liked it). Shorter hair defninely looks like more hair! I also started highlighting it (at a salon not at home!) because it adds a layer to your hair shaft - it definitely makes my hair seem thicker.

Thank goodness for hairdressers!
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Missy

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

I like natural henna because it thickens my hair and makes it look healthier and doesn't irritate my scalp like some of the other products do. Some people with lupus can have bad reactions to the chemicals in permanent hair dyes, so it's probably a good idea to steer clear of them.

Missy · Posted: Mon Dec 04, 2006 8:56 am Post subject:

That's a good point, Marycain. I do have really sensitive skin, but use Aveda products which are much more natural than others - they have some that are all over color that eventually washes out made only from naturally derived products.

Anyway, I haven't had any problems with them. I've always wanted to try henna, since I'm kind of an organic food lover/naturalist at heart (the hairdying is my exception), but I'm so fair and I've seen it come out really dark or red on a lot of people. At my co-op the hennas look really dark.
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Missy

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

If you have your hair done at a salon, they should have neutral henna products - if you want to purchase from a co-op, make sure the product is cassia obovata - it doesn't add color. The red henna is lawsonia inermis, indigofera is "black" henna for darker hair, and you can buy pre-made henna-based products in about 15 different colors if you want to color gray. With any hair color products, natural or not, be sure to do a patch test first on a small patch of skin and wait at least 24 hours to check for reactions. My hair is really dark but has blue/purple undertones because my mom was native american, so it's almost impossible for me to find a hair color that matches, so a friend of mine who's an herbalist makes me an herbal rinse to maintain the color. As you've probably noticed from some of my other posts, I'm very interested in herbs and organic foods, especially herbal medicine, although I definitely use conventional medicine too Smile

Missy · Posted: Mon Dec 04, 2006 9:12 pm Post subject:

Thanks!
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Missy

bthny10 · Posted: Tue Dec 19, 2006 12:27 pm Post subject:

My hair has been getting messed up, too. It doesn't look bad, it doesn't even look thin. It used to be ridicolously thick but now it's more normal. Everyday, I'm noticing that clumps of hair are coming out as I wash and brush it... bleh Rolling Eyes

i dont think it'll get bad...

-bethany
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Courage doesn't always roar. Sometimes it's just that little voice crying "I will try again."

littlered · Wolf Joined: 20 Sep 2006 Posts: 549

I am now used to being bald...and suprisingly like it sometimes: so...a list of a few POSITIVES with hair loss....

1. LESS TIME in the morning, shampooing and conditioning, and blowdrying and curling, and spraying.....now it's just 5 minutes worth of makeup and I am ready to roll.
2. People who don't want to stare at my head now stare into my EYES when they talk to me...it makes quite a difference!
3. When I wear scarves, people stop to say, "What a beautiful scarf!" and smile. wonderful!
4. I have again, had perfect strangers wish me better health and even say they will pray for me. Again, fantastic. Who DOESN'T need a few more prayers on their behalf?
and finally.....
5. I have discovered, in myself...where BEAUTY really comes from...it's how you behave, how you treat others, and how you feel about yourself. I was (still am) a vain person. I modeled in my twenties. I may never have learned this lesson at this deep level any other way.
It's trying to grow back, but only in patches...so my husband shaves me...GENTLY. I will do this until the patches disappear. Until then, I don't worry about standard conventions of "beauty..." I do know what real beauty IS.

Chin up, everyone! You are gorgeous! Love, Kathy

DeliaS · Newbie Alert Joined: 25 Dec 2006 Posts: 3

What an inspiring post Kathy, thank you so much! I've just recently been diagnosed with skin lupus and dealing with hair thinning myself. It's wonderful to read encouraging words.

I've read this thread with great interest and am a bit surprised that no one has mentioned Rogaine. When I first started losing some hair my dermatologist recommended it in order to stimulate hair growth. It seemed to work just fine, hair seemed to be growing, though thinner than before (I too had crazy thick hair). So I stopped Rogaine. Mistake! I went back on it after 2 mos because I started to notice less new growth and now started losing lots more hair. But during my last visit with the doc, he mentioned it could be the Rogaine, stating that it will generate new hair growth but in doing so, will trigger hairloss as new hair starts to grow in place of longer strands.

I also use Ojon products as it leaves my hair very healthy looking. And since I don't have as much of it as I once did, I want what I do have looking shiney and healthy!

Warmest regards,
Delia

littlered · Wolf Joined: 20 Sep 2006 Posts: 549

err....by the way....I only wish I could make my hubby stop making "RRRRRRROWWWWW!"race car sounds when he's going over my scalp with a razor. He has never even nicked me, but dang it's scary.
boys WILL be boys, eh? Rolling Eyes

I tell "Speed Razor" he needs to chill!