[Janny06]

Hi all,

Just found this site while researching hair loss associated with Lupus. I was diagnosed with SLE 2 years ago and so far I have suffered inflammation of the lining of the heart and lungs and rheumatoid arthritis in my shoulders and hands. All have been controlled fairly well.

About 2 months ago I started to develope leisions on my scalp. I have had hair loss associated with it. I am afraid the hair losss is going to be permanent. Unfortunately one scar is rather large and there will be no way for me to cover it once the leision is healed.

After the intial tears and trauma, I am wondering what my next steps are. Is there anyone here dealing with the same issue? Have you found anything that helps regrowth, or strengthening the remaining hair....or maybe wigs or extensions?

I am worried not only about my professional appearance but my personal appearacne as well. I know this should not be my main concern, but as I start to feel better physically, appearance has become a huge concern for me. I am in a new relationship and have not approached the subject of my health yet. I think a big bald spot is going to be one heck of an ice breaker while introducing the topic!

Thanks so much for any info, it is truly appreciated

 

[keebler]

Hi Janny,

Welcome to the lupus site. It nice to meet you.

You have been threw a lot with you lupus. I am sorry to hear about your new problem.

Someone will come along and post about your problem with your hair. This site is full of caring and helpful members.

Take care,
Lyn

 

[pollianna]

Hi Janny, I'm sorry you have such symptoms. I too have the hair loss but mine is thinning. I use nioxin shampoo and conditioner, it seems expensive but it's so rich that you need a tiny bit to wash your hair and my 100ml bottle lasts for months. The conditioner goes quicker tho. There's a vitamin spray that you can buy too. I am totally transparent at the front and have the M recession. I found that painting my scalp with brown or black eyeshadow is a good way to cover the pink of the scalp and matt hides the shine. Why is bald shiny? what's up with that? I did try a hair shakey thing topper I think it was called, it was awful, all over my face after shaking it onto my crown. Eyeshadow is wonderful, doesn't run and it's suitable for sensitive skin. Kudos on your new relationship

 

[KarolH]

Hi and welcome to the board.

Like Pollianna, I have thinning that has become worse now and has turned to hair loss, mostly in the temple region. It seems to be getting worse daily. I have told myself if it continues to get so bad I will shave my hair and buy a nice wig.

I was told after being on Plaquenil for some time the hair would come back but that has not happened. It is disheartening but for myself I have bigger fish to fry and decide I would not worry about it and make myself sick.

I have checked out some wigs that are nicer then my real hair ever was. I am sorry your dealing with this too. I hope yours stops but if not you may want to jump on the same wagon with me and look for a nice wig.

Hope to get to know you better and come join us in the chat room sometime.

 

[Clare.T]

Hello Janny
Appearance is all important for everybody especially these days, I am sorry to say, in personal and professional life. If nothing can be done about the problems, then you do have to be strong and console yourself that it isn't or shouldn't be the most important thing and all those awful cliches about beauty being skin deep and not judging books by their covers etc come to mind. Not that they ever inspired anything but fury in me.
We have every right to be concerned about our appearance.

I wonder what your rheumy has to say and if you have seen a dermatologist. Often rheumatologists are dismissive of skin problems as they regard the internal organ damage as more important and also they tend to know little about treating skin lupus, if indeed that's what the problem is. It sounds rather like discoid.

My concern would be to stop the lesions speading by medicines usually the anti malarials, and trying various topical treatments. Having one obvious discoid scar is bad enough because the hair won't grow again.
If it is discoid, avoidance of UV light including fluorescent and halogen lights is also important whenever feasible. I hope very much it can be controlled.

Best of Luck
Clare

 

[Primrose1960]

Discoid Lupus

Hi Janny,

I have discoid lupus of the scalps with balding patches all over. My dermotoligist prescribed plaquinel (anti malaria) which I have been taking twice a year for about a year and it has slowed down the balding.
A skin biopsy was done on my scalp to confirm the diagnosis and you need to get a referal to a dermotologist.

I have my hair at shoulder lenght with a few layers and with clips can hid the patches quite well. If you have a good hairdresser they can be of great help in cutting a style to disguise the baldness. I have to say I used to be mortified going to the hairdressers but they are great and very understanding.

Because mine is Discoid Lupus the hair will never return, my only regret is not taking the anti malarias sooner which may have prevented further hair loss but I was never on any medication and didnt want to start taking meds. long term.

My advice would be dont waste time, get it checked out to see if it is Discoid Lupus on your scalp or just another side symptom SLE.

Best of luck,

Primrose

 

[LolaLola]

Hello Janny, Although my hair isn't as good as it was, I don't have the problems you do. I have no lesions or scarring, just can't take chances with my hair any more. I keep mine short and just have fun with earrings and things.

Having a new relationship must be great but really scary too. I wish you all the best with it. The more you can come to terms wih this yourself the more comfortable other people will be with it. I agree with Clare, the world can be a fickle and vain place unfortunately but I am sure you are gorgeous anyway!
x Lola

 

[onetay]

Welcome Janny,
I have some hair loss but since I had a lot to begin with it is not noticable. I am sorry that you are going through all this especially since it seems that things are getting better for you now. I wish you the best in finding help and maybe talk to a dermy they might be able to help since it is a skin issue.