Are you losing some of your locks because of lupus? Hair loss isn’t usually listed among the core symptoms of lupus, but it does affect many people living with SLE (systemic lupus erythematosus) and discoid lupus. It may be caused by lupus itself, certain treatments for lupus, or other illnesses or health issues (such as thyroid problems or nutritional deficiencies), according to the National Resource Center on Lupus. How do PatientsLikeMe members manage it and try to protect their mane?
How members manage hair loss
A number of PatientsLikeMe members with lupus have mentioned hair loss in the forum, and some say that hair loss was among their first cluster of symptoms pointing to lupus or a health condition. (Join PatientsLikeMe or log in to see members reporting hair loss, its severity and treatments they’ve tried.)
The same tips and products won’t work for everyone (and remember to check with your doctor before trying new supplements or treatments) — but here are a few pointers and perspectives from members who’ve had hair loss.
“My hair has been falling out for 2 1/2 years. What’s helped me with it is coconut oil, hair vitamins (vitamin B, folic acid, biotin). This doesn’t stop it from falling out but it speeded up healthy hair growth.”
“Plaquanil causes hair loss. I’ve been on it for over 15 years. My sink and shower usually gets clogged up from my hair loss. I get sew ins or braids and wear wigs occasionally. Just last month I got my hair cut short to eliminate breakages.”
“My hair started thinning and getting coarse before I was diagnosed, but it falls out in masses after 3 weeks on Plaquanil. I can’t afford hair extensions, but my doctor and hair dresser both told me about the same product that people with lupus and cancer use….and it is MAGIC. It is called Toppik and it comes in many different colors and forms. I find the powder fibers to work best.”
“I started taking 5000 units of Biotin. See a huge difference the first month and the second month I actually had to get my hair trimmed.”
Others say that supplements and treatments haven’t helped in their case, so they stick with short haircuts, wigs and/or extensions.
Lupus News Today rounded up “9 Tips to Prevent Hair Loss,” including talking with your doctor about your treatments, keeping stress levels low, getting plenty of rest, and avoiding sun exposure and certain kinds of lighting that may contribute to hair loss.
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