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y3lhsa
10-23-2008, 03:11 PM
i lost a big portion of my hair. Also my scalp has became infected and is really gross. I wear a scarf to cover my head because it has become a big black scab on my head. Its so hard because my dermatologist wants me to pour vinger all over my head. and every time i try to i just start shaking and tears start pouring out. Has anyone have this done to there head that are having a better time than me?
:[

i also have lupus scars on my cheeks, ears, eyes, eye brows, nose inside and out.

i don't know what type of lupus i have but its shows on my skin but also in my blood and liver too. :[

sits_inthe_corner
10-23-2008, 05:40 PM
Gentle hugs to ya y3lhsa

You are having a really rough go of it. My hair has started to fall out, but I do not have any sores. I do get sores in my mouth and some times on my face.

I use fletcher's Liquid soure-mouth medicine that works really well for the mouth sores. I've been tempted to use it on my face. I just might, next time I get a facial sore.

Vinigar sounds rather ummm how can I say this...brutal?

Hang tight, I'm sure some of the other members on the board will be able to help you with some information.

You should ask your doctor to print a copy of the lupus information in your file for your own records and ask them to explain it to you. If there's anything you do not understand you can come here and ask.

We have a lot of very informed folks here to help you out as well as lend you a shoulder to lean on.

So keep checking your post :)

KathyW1958
10-24-2008, 05:27 AM
Hi y3lhsa,
Welcome to the forum. I am sorry to hear what is happening with you. It sounds like have Discoid Lupus that has crossed over to SLE, Systemic. I only have the SLE and so I have never had the scalp sores. I am wondering if you are on Plaquenil and have they put you on Prednisone or Imuran? I lost a lot of my hair right before I got diagnosed, but I never had the sores. The thought of putting vinegar on the sores sounds horrible and I think that it would sting terribly. I hope that you can get this cleared up. Maybe Saysusie or Rob would have more information and Oluwa too. Please keep posting ok.

Hugs,
Kathy

Saysusie
10-25-2008, 09:18 PM
It sounds as if you've developed a fungal infection, which is not that uncommon with lupus scalp lesions/ulcers. Usually, hair loss due to Lupus lesions alone responds to treatment of the underlying disorder. However, treatment of fungal scalp infection requires 6 to 12 weeks of oral medication, such as terbinafine (Lamisil) or itraconazole (Sporanox), with or without shampoos containing selenium sulfide (Selsun Blue, Head & Shoulders, others) or ketoconazole (Nizoral).

The vinegar treatment is a well known one for scalp infection. However, it is usually combined with hydrogen peroxide as follows:
Dilute them by 1:10:
1 part Apple Cider Vinegar
1 part Hydrogen Peroxide
with 10 parts water.

Use like a shampoo and rinse after the shampoo is "finished" to make the cure for scalp infections even more potent. Leave the mixed solution on your scalp for about one minute before rinsing it out with water. Repeat this again if the infection is severe. . Avoid getting the solution in your eyes as it may cause stinging. You do not need large amounts of the concoction, only small amounts... just enough to get it to the scalp.

Another effective solution for use, if you have a severe form of scalp infection (and loss of hair) is to use pure tea tree oil plus lavender as follows:

The mixture is
4 parts tea tree oil to 1 part lavender oil.

Be aware that you may feel a painful sting, so you may dilute this further with olive oil or aloe vera oil. Leave it on for the whole night. Warning: the quality source of lavender and tea tree may vary and may not work with the same degree.

I hope that you find some relief and that you and your doctor find a treatment that works for you.

Peace and Blessings
Saysusie

Tiva
10-28-2008, 05:50 AM
I know exactly how you feel and I feel horrible for you.

I too have painful, scabby scalp lesions taking over my scalp. I've been using Nizorol shampoo, topical steroids and all kinds of other fancy things...lol. None of it has worked. I recently took two weeks of strong antibiotics for it and it did help for the time being but as soon as I was done the meds it came back with avengence.

I find the best thing for it is to wash with Dexidin or hibitane surgical scrub. I don't know why it works better then the prescribed soaps but it does.

At this point I will try anything so I will try your dr's advice with the vinegar, I'll be sure to let you know if it works well enough to endure the pain....lol.

y3lhsa
11-03-2008, 02:52 PM
i am on Plaquenil. my hair is starting to sprout back in certain spots of my head. There is a light at the tunnel.


it helps so much if you get an injection in your scalp from your dermatologist. the scabs are slowly coming off. but is sure is painful. :mad:

KathyW1958
11-03-2008, 03:11 PM
hi y3lhsa,
I am so glad to hear this good news. Hang in there and you should eventually get all of your hair back. I will keep you in my prayers.

Hugs,
Kathy