I am in the middle of being diagnosed with sle , my long think hair has become very thin and fallen out and when it does grow

[fairy_leggins]

back its coming back gray , has anybody had this? , Its really getting me down

[poodlegal]

hello,ive had grey hairs since been a teen,although my hairdresser tells me it isnt that bad i think its loads! have it coloured regulary.I too had long very thick hair but the tablets i take for lupus made it begin to fall out and it went very thin so i know what you are going though,my bed was covered every morning,i couldnt run my fingers through it without it coming out and its gone very course and wire like,what stopped it was i had it cut,use to be to my bottom so cut it to shoulders,it was more managable and stopped falling out,its growing back now and getting thicker but texture still same,having it cut is something to think about,ive also heard that when lupus causes you to lose hair its the result of a flare so maybe once its under control your hair will stop falling out? ask your doc,take care,keep us posted x

[janjan78 in reply to poodlegal]

that's interesting..........thanks for that poodlegal cause that actually explains a lot for me too!!!! mmmmmm.......really beginning to think I've had the runaround from the docs for a number of years now & it's not PCOS (hair thinning/falling out is a major symptom of that!) but several "flares" of lupus.......cause PCOS is there all the time & lupus tends to have ups & downs which is more what I've been experiencing.........will let you know what the results are when they come back.........badgered the locum here into doing a load of blood tests while my own GP was away.....but on saying that it didn't really take much persuasion when he read my file & seen I hadn't had my APS/ANA etc tested in 10yrs!!!!!! =O jan.xxx.

[ChelseaStark in reply to janjan78]

Good luck stay strong and keep on going.

[ChelseaStark in reply to poodlegal]

I would recommend doing a coconut oil treatment. It will help with softening your hair.

[fairy_leggins]

thank you . after reading meny post on this site i have related to a lot . after meny years of beeing told that i was making things up and i was just lazy thats why i was so tired . its nice to filnaly meet people that i can relate to . I never knew that Lupus existed untill last month where befor hand i was being treted for rheumatoid arthritis as it runs in the family but they ruled it out so they compared the symptom to sle and they said i have a high chance of having it just got to wait till my bloods in july .. but i was a littl bit silly and have read a bit to much into lupus and scared myself silly :} Fiona

[Hidden]

If there is adrenal compromise (during a flare up and or on a chronic basis) there is a high probability of hair loss and or thinning hair.

Be certain to protect yourself in the sun. Wear a hair. Sunburn on an unprotected scalp is dehydrating and can be a painful bother.

Be well.

[willow80]

I have lost lots of hair and when mine grew back it was very, very curly and the texture was coarse. When it gets wet it curls into tight ringlets. I had a slight wave before but nothing like this. I can't wash my hair every day as the hair that comes out is incredible. I know we lose a certain amount of hair but this is far more than we should lose.

Wishing everyone well and has anyone had this experience too?

[fairy_leggins]

yes willow i had this still do , i was taking to my boss about it and she said to me every body loses alot of hair while washing it . so i took a photo the next time i washed it and showed her and she was gob smaked with how much i lost . just when mine grows back it goes gray

[Acorn1]

Hi there,

I've lost a lot of hair over the last few years since my Lupus has got worse, particularly around the hair line at the front. I have very fine patches either side of my fringe. When it grows back it's fine and coarse. It is grey too but I'm 40 so I expect that now.

I use Charles Worthingtons 'Results - Stay Smooth' on damp hair before blow drying it with a barrel brush. This smooths out the frizzy hair along the hair line. It's quite heavy serum though so you only need a tiny bit. I also use a thickening mousse on top of the serum prior to blow drying to thicken it up. I have to be careful whilst using the barrel brush because it does pull at the roots but I usually save the blow drying for when I'm going out.

On a special occasion I use a non-permanent dye the same colour as my natural hair, on the day of the occasion. This thickens up my hair and makes it look shiny and smooth for a day or two. I know we have to be careful with chemicals, but I'm sure there are more natural hair dyes out there, I just haven't looked yet.

There are ways of getting around your hair loss as long as you tackle it head on (pardon the pun!) and don't get too down about it. I went to my hair dressers and explained the situation so she cut my fringe in such a way as to hide the worst of the patches.

[JSue]

yes this happened to me too. taking Plaquenil (hydroxychloroquine) helped a lot -- when i lower the dose the hair loss increases so i know it is connected. I have also used non-perm hair dyes -- they thicken the hair and it looks nice for a couple of weeks. now i'm 48 my gray has increased (white really!) so i have started using permanent hair dye and i try to have it done at a salon -- very expensive, but it looks so much better. i also use conditioners, and other products to nourish my hair to make it shiny, etc. whatever smells nice and doesn't weigh it down - i try it! eventually i had to use scalp cover (spray on, cosmetic creams) when the hair loss increased and you could see my scalp around the centre parting especially. Finally my lupus doc prescribed Minoxidil and it has resulted in some regrowth -- not a lot but some and i'm thrilled with that. The hairs that grow back are WHITE and some grow in places other than my head!! So basically my hair is still thinner than it was, but i'm not so depressed because i've tried these various methods to improve the situation. don't give up (i know it's very depressing) because there are things to help.

[lupylupus]

I have lost loads of hair around the front and sides. I hate it, and constantly feel bad about it.

I have a volumiser fitted and it helps a lot, but nothing looks as good as your own hair.

The medication I have been taking for ages now seems to have stopped it getting worse, but I was going to my GP for many years about my hair loss ,before I was diagnosed. It took a new GP when I moved to send me to the hospital for tests. Until then they had been testing me for thyroid function only and of course it was normal every time. I am sure they thought I was just mad!

I could have had so much more hair now if only thery had understood lupus they way we all do!

I am the sort of person who puts up with the way I feel and gets on with it even if I feel sick. I never seem to know how bad I feel until I start to feel better. I know I have felt bad at times and had many flares in the past, but to be honest i never really know if I am having one or not unless I have a rash and my hair falls out!

How do you all really know if you are having a flare? I can feel tired and rather low at times, but at 65 I would have thought that was going to be the case anyway!

I have had lupus for years now and still find it difficult to understand. I used to get the most horrendous feelings of anxiety that was unlike anything I have ever had before. It would wake me every few minutes at night and it culminated in a hot sweat afterwards. I had this day and night. It was really horrible. Since taking Mycophenolate this has almost completely stopped and I feel fantastic by comparison.

I would love to know how you know for sure about your flares please? It will help me to understand myself better,

My best wishes to you all and thanks for all your support on this web site. x x x

[ChelseaStark]

I know what you're going through. I was losing a bunch of my hair. And when it started growing back. It came back silver. Over the Super Bowl weekend I discovered a white streak in the back dead center of my head. That was the last straw. So I decided to dye my hair.