Lupus & Hair Loss

According to the LFA, “Hair loss occurs in about 45 percent of people with lupus at some time during the course of their disease.”

A silly cartoon, but I do think this is probably what I look like in the bathroom every day.

The loss of your hair, especially if you are female can feel very devastating.  It was one of my first symptoms of lupus and definitely one of the most noticeable to me.

There are two different types of hair loss (alopecia) with lupus.  One type is the hair loss associated with discoid lupus, which is normally caused by a rash which can lead to scarring.  Both the rash and the scarring can cause the hair loss.  In this case, the hair loss is normally irreversible, which is why early detection with discoid lupus is so important!

The type of hair loss I’ll mainly be talking about today is caused by systemic lupus.  Your body attacks your hair follicles.

Poor, poor hair follicles.

It is normally loss all over the scalp, but can fall out in patches.  When I had my first real flare, I had loss over most of my scalp, but had one half inch bald spot!  Sometimes even just tugging on your hair can cause it to fall out into your hand. This type of hair loss is normally reversible once you get your flare under control.

Sometimes drugs, such as prednisone and other immunosuppressive therapies may cause the hair loss and may make your hair thin or brittle.  Once you stop the medication, your hair loss should stop.

So, what can you do for SLE hair loss?

  • Get your disease under control.  I know, I know, if you could, you would.  Just do your best, and sometimes the knowledge that you’re doing all you can will help your peace of mind.
  • Try not to tax your hair and scalp.  Some experts say that dyeing your hair and having perms etc are not going to cause more damage and loss… but I can’t imagine that all those chemicals are just GREAT for your scalp.  In my own experience I can tell a big difference if I try to be gentle with my hair. I lay off the blow dryer and straightener except for a couple of times a week and try to cut down on my washings.  I may not look like a fashion model, but if it means I will have MORE of my own hair, so be it.  Besides, air dried hair just goes along with the malar rash, right? 🙂
  • Take some biotin.  My rheumatologist recommends taking it, and I notice my hair has grown faster (as do my nails) which is great if you’re getting any new growth.  Or, if you’d like to get more biotin from diet alone, up your intake of brewer’s yeast, nutritional yeast, liver, cauliflower, salmon, bananas, carrots, egg yolks, sardines, legumes, and mushrooms.
  • Don’t use Rogaine.  It isn’t made for this type of hair loss.  Ask your doctor about it and he/she will tell you the same thing.
  • If your hair loss is significant, don’t be afraid to look into a hair piece or wig.  Be careful with extensions as they can be damaging to your hair, but there are all kinds of clip in hair pieces and extensions.
  • Be patient.  Unfortunately, hair loss happens fast, and regrowth can take awhile.  I think this is just another way we learn to really appreciate our health.  I appreciate every little new hair I get. 🙂

I have been losing my hair the last few months, and though it isn’t super noticeable to others, it is to me.  It is scary and frustrating.  I am doubly scared because I am getting married in about 6 months and I’d like to have some hair on my head!  I try not to stress about it, because stress doesn’t help my flare AT ALL.

A couple weeks ago, my fiance and I were getting ready to leave to go out. I combed my hair after a shower and my hands were FULL of hair.  I couldn’t help it.  I cried.

My fiance saw me and just hugged me a long time.  He said he loved me, hair or not.

I’m not going to tell you it isn’t tough.  But be strong, because you are.  You can deal with it.  Your hair does not determine your worth as a woman.

Hair or no hair, I’m going to look fierce at my wedding.

24 responses to “Lupus & Hair Loss

  1. I think you will look beautiful on your wedding day. Thanks for sharing this information

  2. Hello, good informational post. THanks for sharing all this info on lupus. Good job spreading awareness!

  3. Glad to know I am not the only one. Thank you for writing this blog. –Lisa

  4. Just found your site. I recently started losing my hair. I have lupus and sjogren’s. I havent tried hair pieces yet but I would like to. Do you have any suggestions?

    • Hi Cara! I haven’t tried any yet, but have looked at some in stores. I’d like to get one to try out before my wedding, so maybe I will do that and review it here! Thanks for visiting and commenting!

  5. I’ve been losing m hair for years now. When it first started it would grow back in grey, however lately it falls out every time I shower or run a brush through it. Some of it will never grow back b/c of scaring. I too have handfuls of hair falling out, it’s not easy to deal with. I know there is nothing that can be done, but I still cry. I have a wig, but I don’t use it yet. To cover the bald spots I use and eyeshadow primer and eyeshadow that matches the color of my hair and apply it to my scalp. It makes it less visible. Just try it!

  6. Losing your hair is depressing. Thank you for posting this and giving me a bit of hope.

  7. very good , thank you for sharing.

  8. Not that you ever want someone to go through what your going through, but when you find someone that is, it’s a weird sense of peace knowing you’re not alone 🙂 Thank you for sharing!

    Heidi

  9. I was diagnosed in 2010 with Sjogrens and SLE. For the past few months my hair has been shedding. Now it has fallen out in patches. I cry a great deal of the time for the embarrassment. I won’t allow my fiance or children to see how bad this looks. I currently wear wigs. I want to get my hair braided but not sure if more damage will occur. Your post is motivating. One day I will get the nerve to not worry about what others think..

    • That is so tough! I just saw this comment, but I hope it may be getting better by now, or that you’re able to deal with it a little more. I know just being gentle with your hair is best, so I don’t know that braiding would be best. I know a lot of women who feel better once they even just shave or cut it very short. I think if I were to deal with that much loss again I may just shave it. When I was in the midst of my worst loss I just kept getting it cut shorter and shorter. Good luck and if you see this response, let me know how you are doing!

      • Hi,
        I was diagnosed in 2010 with SLE. I understand exactly how you are feeling. Over the past few months my hair had fallen out terribly bad. I began taking hairfinity vitamins and went to RRickys and purchased Shea Moisture’s thickening shampoo for fine, thin hair. Ive been using both products over the past month. My hair has since stopped falling out and im beginning to see some growth where I had seen some balding. Hope this helps

      • Hi,
        I began taking hairfinity vitamins and went to Rickys and purchased Shea Moisture’s thickening shampoo for fine, thin hair. Ive been using both products over the past month. My hair has since stopped falling out and im beginning to see some growth where I had seen some balding. Hope this helps

  10. Hi!
    Great informative post. I, too, have lupus and started a blog to spread awareness and give advice based on my experiences. Over the summer, I lost a lot of hair because of a major flare up. It got so frustrating to see and feel the awful patches that I shaved it all off bald two days ago! Quite a scary decision but I feel so free now! I’m on Chinese herbs and using various oils (flaxseed, castor oil, vitamin e, coconut oil) to help nourish it. I’m hoping for the best and right now getting used to my new do!…er…or lack thereof.

    P.S. Your husband sounds a lot like mine. Hang on to him 😉

    • Thanks so much for stopping by! What is your blog, I’d love to check it out!

      • Brightness419

        Dear,

        How is your hair now after using biotin?
        Any improvement?
        Did have any better solution?

        • Biotin doesn’t necessarily help with lupus hair loss itself, but it greatly helps to grow your hair faster and thicker when it does grow back in. Unfortunately, you have to get the flare causing the hair loss under control. Sucks, I know. But, once you are able to do that the biotin helps greatly to speed up the process of hair regrowth. I take it constantly, whether in a flare or not. Hope this helps!

          • Brightness419

            Thanks dear,
            I tried to stop the flare up, but I could not, my doctor says that the lupus is already under control…

            Do have any certain product which stops the flare up.

            Thank you once again.

          • Other than medications your physicians can give you, the only advice I have is to eat cleanly, drink lots of water and get plenty of test.

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