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