Hair Loss : (

[Teaspoon13]

Hi everyone

Having been diagnosed 3 weeks ago with SLE, I'm still a bit shell shocked. I am just coming out of a 4 week flare up and have lost a lot of hair, this has never happened before in my ' flare ups ' so am freaking out. anyone got any tips or words of wisdom !!!

[Paul_Howard Partner LUPUS UK]

Hi Teaspoon13,

You might find our factsheet, 'Lupus - The Skin and Hair' helpful. You can read it online at lupusuk.org.uk/want-to-know...

Have you been wearing a hat? It has been quite sunny recently and unless you're protecting yourself this could be contributing to your hair loss. Have you started on treatment since diagnosis?

If you need any information about lupus we have a free information pack. Just send me a private message or email [e-mail] with your name and address if you'd like me to send you one.

[Teaspoon13]

Hi Paul,

Thanks for your reply. Yes I've been to 'Lupus UK' site and got your info pack, its been a big help.

Been put on Hydroxy and Vit D tablets. GP and Rheumy been fab. got appointment next week with nurse so hopefully get afew answers.

As for the sun : ( Yes I have a hat ready and waiting. but not been out due to Rash ect.

Thanks again Paul, and everyone on this site I have found it so helpful and a fab place to chat, rant, and get advice.

[Purpletop]

I lose hair all of a sudden when my lupus flares - it is THE symptom by which I measure whether I'm generally in a flare or not, the other symptoms are too random to give me an accurate picture.

There is nothing we can do to stop it falling other than stop the flare - my rheumatologist puts me on a short course of steroids immediately when this happens, to stop my losing too much. I'm already thinning at the top because of mycophenolate and hydroxy, I don't want to lose it all!

[Natura]

I have been losing hair from time to time in clumps. It actually grows back and I have short little hairs all over the top of my head. I didn't think there was anything u can do about it. Not really helpful, sorry..

[emmalemon]

Dear Teaspoon, I was diagnosed almost 11 yrs ago now. My doctors would tell you my worst problem was my kidneys, but to me it was the hair loss. I stopped brushing it completely because every time I did it came out in clumps. At the time it was very long but the best recommendation I had was to cut it all short, like Natura says below I had lots of short regrowth, it looked much thicker and having had long hair for most of my life it was a fun change. After my Meds ( Hydroxy, Mycophenolate, steroids, Vit D) kicked in it grew back, look at my profile pic it was taken last year! Don't worry to much about it , easy to say I know! Hope this has helped, e x

[madmagz]

Hi Teaspoon

Firstly welcome to our world, you are probably going through all sorts of emotions right now and hair loss really is not making you feel too great I expect, don't panic love. I have had several different colours and textures of hair since being a lupie! Sometimes I lose patches others the lot, that saves me a fortune on hairdressing....yes I have a strange sense of humour but it keeps me going. I have just celebrated buying a comb after being bald for over three years. I have generally had a pretty full head of hair come back and been able to grow and style it just like everybody else, now when it goes I just think here it goes again admittedly though the first time I was gutted. DO NOT FREAK OUT STRESS MAKES IT WORSE!!!! Do keep your head protected from all UV light that means protect it from low energy lighting and florescent lighting too. Keep it well moisturised and if you get sores see your doc and listen to any advice given, I would say that if you have creams for other parts of you write down which ones are for where and when you should apply them so that you get it right. I have loads and would not like to get it wrong! There are shampoos when your hair comes back that are available either on the internet or some chemists for thickening up hair, I am using one called "Thick and Fuller" only available on the internet but worth it.

Good luck and I hope it comes back soon

Madmagz x