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Thread: I am new and confussed

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    Default I am new and confussed

    What in the world is happening to me. I was diganosed in June, my hair has fallen out, so on Saturday I had it shaved off. I feel really crazy. I need a cap that does not itch to stay warm at night. I am scared about this stupid, disease that just decided to hyjack my body....help

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    Default Hi, and welcome

    It's okay to be confused - we all are when this disease first hits us. Hair loss is pretty common, unfortunately, but unless you have scarring from scalp lesions, it generally grows back. It may be a different color or texture when it comes back, so don't be shocked if you go from straight to curly, or the other way around. In the meantime, it's important to protect your scalp both indoors and out - a good sunscreen and a tightly woven hat that doesn't let sun through will protect you from sun exposure. As far as night time - I found that men's nightcaps are generally made of really soft material that doesn't itch - they may look dorky but at least they are warm. You can find them in the mens department at a lot of stores.

    Learning as much as you can about this disease is a good way to get a handle on it, and get over some of the fear and confusion. There are several books for newly diagnosed lupus patients, and you can also get more information from the resources links on this forum. If you have started on medication , it mat take a while to kick in, but hopefully, you will start to feel better soon. Lupus is a lifelong, chronic disease, but most people learn to manage. As you become more experienced with the disease, you will learn what your body can handle, and what things may trigger a flare up of the disease. I know it's very hard right now, but it does get easier. And there are always people here to listen and try to help.

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    Default

    Hi and welcome to the forum. There are a lot of nice people that come in here. There are a lot of very knowledgeable people that will be able to answer all of your questions. I have SLE and have had it most of my life. I lost a lot of my hair right before I got diagnosed back in 1994. I have been on medication the whole time and have been doing pretty well with flares here and there. I just want to welcome you to the forum.

    Hugs,
    Kathleen

    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    Default Thank you for your kindness...

    It seems everyone is kind, and thank you sor your support. Has anyone decided to walk around with their hair shaven and had to answer lots of questions on lupus? I wonder what I should do. the wig itches, so I must do something.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Hello Very Happy :lol:
    As Marycain has pointed out, your hair will eventually grow back. Since you have shaven your head, please be careful to keep it protected from the sun as this may aggravate the lesions that caused the hair loss.
    Many people put a wig stocking on their head before placing the wig on. Have you tried one of those? Doing so might prevent a lot of the itching that the wig causes.
    Again...your hair will eventually grow back once the medications start to take effect. Are you taking plaquenil or any other type of hydroxychloroquine? They generally take several weeks or months before you begin to see the effects, but they work rather well in healing the lesions and helping your hair to begin to grow back!!

    I wish you the very best,
    Peace and Blessings
    Saysusie

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    Default it will get better

    i know thats not easy to believe right now but it does get easier. somehow you learn to cope with all the medication, the routine of appointments and the changes your body goes through. my hair has changed to, its like straw, and i haven't cut it since i was diagnosed (18 months) for fear it won't ever grow back! but just coming to this website (which i am also new too) helps we know the frustrations and the ups and downs of lupus, you will cope in your own way, feel free to chat anytime
    love lizzy bee from australia

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