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Jennyfoo
06-25-2008, 09:33 AM
anyone else having massive hair loss?

I am so upset over this. I just spent the past 2 years growing my hair out from a short 'do and it's past my shoulders and hubby loves it. Unfortunately, it's gotten so thin it looks awful. I have to wrap a rubber band one more time around it in order to hold it in a ponytail than I did a month ago. I was cleaning out my dresser last night and found the 10" braid that I'd cut off about 5 years ago to donate to Locks of Love(I never got around to it. LOL) and OMG! My braid is so thick. My hair is about 1/2 as thick now. When I wash it, I get hair all over my hands. I keep finding hair on my shirt, in the car, on the baby, all over. It makes me so sad.

Will it grow back? Will it be funny-looking- sticking up all over when it does? It's thinning, and I have a couple of small bald patches where I have scalp sores. but mostly just thinning. Ugh, should I cut it all off again and go for a short 'do again? :(

Saysusie
06-25-2008, 09:42 AM
Hair loss, unfortunately, is a common symptoms of Lupus. In almost all cases, it does grow back. Like you, I had several completely bald spots on my head and had to wear a wig for a time.

My hair did grow back, but it was not the same thickness or grade as before. My hair is now a very fine texture, extremely curly, and very soft. Before it was so thick that it was a nuisance, it was always very curly, but it was also coarse. I actually like my new grade of hair because it is much more manageable than before. However, this does not happen to everyone. Some find that their hair grew back exactly as it had been before.

Now, with any new growth of hair, it will, at first, come in like baby fine hair. You will have to treat this new hair gently and take care of it while your hair regenerates. As you know, your hair is continually growing. So, you must condition it, cut it, and keep it protected while it grows. But, it will grow back!

Peace and Blessings
Saysusie

Jennyfoo
06-25-2008, 09:59 AM
Thanks saysusie! My hair is already ultra-fine baby-fine grade hair, so I already have to treat it gently.

My adopted 4 y/o daughter has ultra-curly hair- not kinky, but very curly and very fine-textured. She's black and I've found lately that her hair has been a real pain to keep up- literally. My hands just don't work as well as they used to and braiding her hair is painful. She's sporting ponytails right now and I twisted the hair in the ponytails into teeny ringlets so it's not "too puffy". She doesn't like it puffy. Hehe.

I may have to wait and see how my hair comes back in. If it's too crazy, I may have to go ultra-short pixie 'do again. Not my favorite, but good for new hair growth.

cheryl_v
06-25-2008, 10:16 AM
Hi Jennyfoo. My hair is thining real bad too. I use to have a short hairdo I kept for a couple years. Mine looked worse when I tried to go back short. The scalp stood out a lot. I let it get shoulder length, and that works well. I can pull it up in a hairdo and cover thining areas, that way not really noticed. Like Saysusie, mine grew back softer and more managable. It's always been straight, but thick and frizzy. I hardly ever wore it down, was hard to manage. Funny, it looks better down now. On top its still thin, bought new wide headbands in great styles. Covers up and looks good, everyone compliments my headbands. If they only new they came from the Dollar Tree :lol: . We all love our hair and understand, please try not to stress too much over it.

Razzleberry
06-25-2008, 11:19 AM
My hair seems to fall out in cycles ...bad flare = thin spots somewhere. The first time it fell out uniformly and was everywhere ...all over the bathroom floor, the bed, me, hubby. What a pain. The new hair that came in was curly ...I have (well had) super straight hair. It was interesting :-)

Now I just get spots that thin ...a lot ...then grow back in. I think the key is knowing what is happening. The first time you freak, the next time you just deal with it.

mamashell
06-26-2008, 09:23 PM
How does your hair grow back. Is it from the medication you take? What do I need to do?

Saysusie
06-27-2008, 09:38 AM
The medication helps to heal the lesions in the scalp. Once those are healed, the hair will grow back. Also, the medications help to slow down or reverse symptoms of the disease. Once this occurs, the hair will grow back. So, in essence, yes...the medication precipitates the regrowth of hair.

Peace and Blessings
Saysusie

kimb
06-28-2008, 08:47 PM
JennyFoo
I am sooo with you, on the hair falling out, all over everywhere!
My hair used to be very thick, and long. I have lost 3/4 of it. I loose gobs and gobs when I wash it or brush it. I find most of it under my pillow and around the vaccum beater bar. I joke to my girls that I am waiting for the 'hair fairy' to find it under my pillow and bring me some new hair!!!!
One thing, may sound gross, but, I dont brush my hair every day. I run my fingers through it to fix it. I brush it only before and after I wash it.
My hair lady knows I have lupus and thinning hair. She layers it very lightly to make it look a little thicker. Before, I had it all one length, it looked very thin and stringy. So much better if you get some layering. Keeping it long enough to put in a pony helps too.
Waiting for the 'hair fairy',
Kim :wink:

jessicalove:)
07-15-2008, 05:28 AM
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Hello, i read your post and i can relate toyour story. I am 22 and I was recently diagnosed in January with SLE. I have lost 50% of my hair, it has thinned so bad that i was shammed to go outside. it is still long, but very thin. I have always had thick hair, so it really bummed me out. so i put 3 extentions in my hair and i love it. I have an older friend who hair was down to her rear but she lost all her hair in 2001 from Lupus and now her hair is thicker and longer than it was before, it even changed her texture. So you may have lost it temporarily but you will reap the benefits but, in the mean time just wear curls or buy some extentions. I really hoped this helped!
God Bless!

Faith
07-15-2008, 08:55 PM
Hi Ladies,

Nioxin shampoo and scalp therapy helps grow the hair back. I didn't believe it until I noticed it mhyself. No longer gobs of hair on the floor and in the drain. Thank goodness. Everyone is different; what might work for one may not work for another.

Faith

kimmyb45
07-29-2008, 06:05 PM
Yea I also have massive hair loss. Ive started out with long straight hair. Then it started thinning when I was diagnosed to I stopped getting relaxers when I was 15 and I completly changed textures. Now it was really soft and got curly whenever I wet it. As soon as I started taking chemo about 5 months ago, my hair has been thinning sooooo much. Now Im am 20 years old and have to go to school and to work with a wig on. It doesnt bother me much but i desperatly want my own hair back. i miss it so much...... plus its just way to hot for wigs right now lol. Sometimes it makes me so upset when i see other people walking around with there hair downand I wish that could be me again.... I kno it will eventually grow back but for now its jus very depressing. :(

Faith
08-06-2008, 02:38 PM
Kimmyb45,

Hang in there, it will come back eventually. I had long hair for 25 years, and kept losing more and more. I finally just had it cut into a bob and I love it. I also use the Nioxin shampoo and scalp moisturizer which helps prevent hairloss.

My heart goes out to you.

Faith

livingINmyDayDreams
08-27-2008, 06:10 PM
I use Nixon as well, it really helps. My hair is all over everything and it makes my brother so mad. It gets stuck to everyone's feet and everything else. Actually at christmas time last year I wrapped my presents for my friends and my hair got caught in the tape. It was funny.
But yeah, the Nixon really works. My hair is pretty much back to normal but I still lose it everywhere too, but no one would ever know because it grows back just as fast.