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Lupus and Hair Loss

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Lupus and Hair Loss
10/24

A common complaint of lupus patients is that they are losing their hair. While this may not be a life-threatening symptom, for most people it is a very distressing development.

I’ve had lupus for twenty years. I don’t know when my hair started to thin–I’m sure it was before I ever suspected I had lupus. I do know that as a young woman I had thicker hair and at one point in my illness, maybe five years ago, my hair was so thin that I used to joke about the number of parts in it.

But as lightly as I tried to brush off this cosmetic difficulty, there was really nothing funny about it. In the last couple of years my hair has come back–it’s not thick by any standard, but at least I can choose now where to put my part—my one part.

As I lost my hair, and then saw some of it grow back, I wondered what was at work. Was it my poor diet? I had cut out so many foods because of my volatile digestive system. Was it prednisone? Lupus?

Turns out, losing my hair could have been caused by any one of these.

Thinning hair may be a sign of active lupus. It also may be a consequence of taking immunosuppressive drugs. It can be a consequence of poor diet, or the inability to absorb nutrients from the gut (if the gut is one of the places that gives you trouble). Or, it can be the consequence of just being very sick. People with discoid lupus often get plaques on their scalp and this can cause hair loss.

It’s not always going to be easy for a doctor to determine what is going on, why exactly a patient is losing hair. However, it is possible that in a person with lupus whose disease has been relatively quiescent, hair loss could be a sign that the disease is becoming active. So this would probably be a good time to check with your doctor and have your labs looked at.

How to deal with the hair loss, if you can’t stop your medication, calm your lupus or improve your diet? There are a number of hair augmenting products, clip on pieces that can be purchased online. These include artificial bangs, to disguise a sparse hairline, falls, and pieces of various sizes that are attached to little clips and can be placed strategically around the head. These don’t always work well if the hair is really thin, because it’s hard to disguise the place where the hair attaches.

One solution that many people don’t find satisfying but which works fairly well, is to wear a hat. I have to wear hats a lot of the time anyway to protect myself from overhead lighting or the sun. The trick here is to have a lot of different hats in different colors. Dressy hats and sporty hats, etc. And then I try to make it look like it’s a style choice and not a necessity that I wear a hat. You’d be surprised at how many people believe this is true.

Finally, I just try to get used to the fact that I have thin hair. That I will never have a full mane, those curly locks that my sister enjoys. I think, if other options have been exhausted, we have to learn how to look past what people might see in us and remember that our value has little to do with the way we look. Anyway, most people aren’t as interested in our appearance as we believe them to be. Most people are actually thinking about the way they look.

Some information on hair loss can be found at:

Dr. David Fiorentino’s discussion about hair loss at the Lupus Foundation

Coping with Lupus related Hair loss

What to do about hair loss, SLE Foundation:

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