View Full Version : Hair Loss...????

03-13-2009, 06:35 PM
just wondering, have any of you had any kind of hair loss since being diagnosed with lupus ? because i noticed that when i wash my hair and when i brush it, there is always some hair in the drain trap and in my brush...its not like alot, but still. its something that i brought up with my doctor and they said to just keep an eye on it. is it because of the medicines i take? cuz i know methotrexate is a chemo drug...but anyways, is there any way to stop this from happening?
i would hate to have noticeable hair loss :hissyfit:

Angel Oliver
03-13-2009, 06:56 PM
Yes i have experience with hair loss. Please do not worry, not everyone loses their hair.But if you do it will grow back. But remember it may not happen, so just wait n see.

I had long hair.Just got it to where i wanted it.Had it straightened,the colour was fab and it was so shiny....everyone commented on it.I loved it.I hid behind it...it kept me warm. I could wear it up wear it down, have pigtails, have platts....i loved my hair.

One day i noticed as i washed my hair, the bath was full of thick hair. Its normal to lose 150/200 hairs a day if im not mistaken or thats what i was told.

As the weeks went on, my Mam commented about the plughole having so much hair and had i cut my hair in the bath i said no.
Later that week i went out. I had 2 platts in. Someone said....why is your hair all spikey on top. I didnt know what they meant and ignored the comment.
It was only when i got home i realised. As i unplatted my hair...you have 3 strands.....one of the strands was all in my hand....not attached to my head.OH PANIC!!! I ran and shown my Mam and i realised i could cover it up. I kept an eye on it. In fact everyone at home did.....because my hair was thick.You could clearly see i was extremely thin and had a couple of small(but to me massive) bald spots.
Things got so bad my pillow was covered in my hair. My hairdresser came round and put a conditioning treatment on to help.As she brushed my hair i could see...hand fulls of hair..i just cried.
As the days of finding hair everywhere went on...i made a decision. I went to the hairdressers the following night and had the lot...shoulder length hair all chopped off.
I felt bare...naked...cold ears..cold neck. But you know what. What a relief. I was torturing myself keeping the long hair. I decided i would grow it again when i was ready. It was so much less hassle. It took me 5 or ten minutes to wash,dry and style.Instead of the 2 hours with long hair.
I kept my very short hair up until last March. I am growing it a little now. Go to my album and see my many hair doos.
When i went very short...i wore caps, hats, scarfs oh i was so trendy so fashion had to be top of the list.I even wore a wig,but it itched and didnt use it.
I was on NO medication.It just happened when i first got sick.My first symptom.Doctors didnt seem interested at what was such a major event in my life.
But you know what.....dont worry.It will grow back and what fun i had with short hair.I am going to go back to short again soon as i am finding it hard to lift the hairdryer.Yes its a shock....but for me...a blessing in disguise...i had so much fun.Everyone said i looked good with short hair.

But listen...this was my story and may not be your story...so keep an eye on it...but please dont worry...it may not even happen.


03-13-2009, 08:18 PM
Ashley, I have the same hair loss as you. Every time I wash my hair, there's hair in the drain and quite a bit on the brush too. I started with very thick hair, so it's not too noticeable really. I'm not on any of the chemo meds, but I notice the hair loss is always worst a few months after a major flare. I do color my hair every few months, but other than that I try to use gentle shampoo/conditioner, no hair spray, and no other hair products. I heard that helps a lot and it has seemed to minimize the hair loss over the last year. I agree that it doesn't happen to everyone, and at least for me the lupus symptoms keep changing. Sometimes the fatigue is the worst, sometimes it's pain, sometimes it's new stuff, like the brain fog I've had lately. But you may never have any worse hair loss than you do right now, and it can get much better too.

Angel, wow, what an experience. You have a wonderful positive attitude about it and JI love how you used it to experiment with new hair styles.

sick n tired
03-13-2009, 08:59 PM
Hey Ashley,

My hair falls out right before a flare..then falls out all throught it. I know I am getting better when it stops falling out like that.:skeptical:

Angel...I am thinking of getting my hair shorter, too...Washing my hair sometimes tires me out and then I am unable to dry it.:yes:

Angel Oliver
03-14-2009, 06:17 AM
Well im going to leave it maybe a couple of months. My friend actually bought me a hair straightener you see. Its helped allot, i do use all the heat products as not to damage my hair.But i feel a bit bad,because i know it costs so much.

But its fun and so much easier. It feels really weird at first...you feel the cold n your head and ears at first, really weird after having thick hair like i do. But you get used to it. Then it becomes fun. Oh to get up wash your hair, it dries in minutes then style for a few seconds.Oh no more aching hurting arms when lifting that hairdryer. I'll let you know when i have it done. If you have it done, you'll love it. If not hair grows back fast, so no big deal. Goodluck and let me know if you have it done.


03-14-2009, 06:29 AM
Hey Ashley,

My hair falls out right before a flare..then falls out all throught it. I know I am getting better when it stops falling out like that.:skeptical:

Angel...I am thinking of getting my hair shorter, too...Washing my hair sometimes tires me out and then I am unable to dry it.:yes:

I have the same thing going on, right before a flare and through the flare. When I am not flaring, I have no hair loss.


03-14-2009, 09:51 AM
yes, i too suffer with hair loss during a flare. Sometimes i go to my hairdresser, and he finds groups of new hair growing.....so yes it comes out, but then it grows back. yuk.....

i still have mine long, but it is definitely thinner.

tiggerlishus - Heidi
03-14-2009, 11:53 AM
hi all its interesting how some of you have different times i will have have to keep a diary and see if it differs i know when my mum comes to stay she has said have i got a cat cause with having no strentgh to hoover some times you can really see the hair loss and in the comb and for the bath i really hate that job makes me gag pulling hair out from there!! my hair use to be soooo thick i used to have it thin out now i do everything i can to get volume!! i wish i wasn't so beauty consious cause my mum cut my hair short as a child i hate it so much i never had it done again but it would help soo much thou it does get slung or tons of mouse shoved it in to keep it curly and not frizzy! :wacko:

03-22-2009, 08:14 PM
I suffer from a lot of hair loss too. I can't stand it when I'm cooking and have to worry about hairs getting into our food.

03-23-2009, 05:30 AM
I also suffer from hair loss, i have kept mine long it is thinner now but i not ready to cut it off like my docs says she said i won't notice it as much but have had long hair since high school and i don't want to go short. some weeks i notice more loss than others. i see all the stubs on my head with new growth so i know it is growing again. don't panic its just another symtom to deal with. as gotten older with it the new hair is now comin in grey and thats worse for me. haha:yes:

03-23-2009, 07:03 AM
I've noticed that mine goes with the flares as well. It's nice to know that it's growing back in, but I really hate those short hairs sticking up! :yes: Nothing will make them stay down. I really don't want to cut my hair short again. I like being able to curl it - if I have the energy, or to pull it up. When it's short, yes it's easier, but you're very limited w/it.

03-24-2009, 05:02 AM
yeah i can see the new hair growing in too.
and its extra obvious because the new hair is darker, since i dye my hair [[my natural color is brown]]
... but i mean its a good sign! haha

03-27-2009, 11:01 AM
yeah i hate that too but mine are grey and always seem to pop up right wear my part is down middle of my head. and drives me crazy:hissyfit: