2 posts tagged “hair loss”

Hair loss with lupus: Tips and treatments others have tried

Posted 7 days ago by

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 acidbiotin). 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.

Have you experienced lupus-related hair loss? Join PatientsLikeMe or log in to connect with others on this topic today.

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Coping with Changes in Physical Appearance

Posted January 24th, 2013 by

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful?

A cute hat can help to cover thinning hair or bald spots.  Image courtesy of Stock Free Images.

Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:

  • Using attractive scarves or hats to cover thinning hair or bald spots
  • Experimenting with different cosmetics to see what works best
  • Treating yourself to a spa manicure and pedicure as a pick-me-up
  • Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
  • Soaking in a scented Epsom salt bath to ease pain and relax
  • Consulting with a hair stylist about better styles for thinning hair
  • Using gentle, non-drying facial cleansers and lotions
  • Switching to an electric razor to improve ease and safety
  • Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.