Hair loss

[Liz2304]

I haven't yet disclosed this , but as well as my SLE , I also have significant hair loss the hair loss has now been diagnosed as alopecia. My partner noticed my hair was falling out more and more and this was the first signs something was wrong, I used to have lovely thick hair now and it's very thin and I can't really do anything with it . Does anyone have any recommendations of shampoo to help with my hair. 16 months later my hair is still failing out?

[Tonk]

Hi Liz2304,Some of the medications we take for Lupus can make one's hair fall out.

I had clumps of hair falling out with Methotrexate. My rheumatology consultant changed my medications, and that stopped the hair loss.

Hope this helps.

[FandNnan]

Hi Liz, See the post from SurferGuy yesterday. He's used products that I had not seen before and felt that he'd seen some improvement for his hair loss. 😊

[Carcrashgal]

Get yourself referred to a hair clinic if you can - it's not the same as Alopecia, but I developed telligen effluvium (dramatic hair loss likely due to massive antibiotics; it became much more common after Covid) - I got it after several weeks in ICU with pneumonia, sepsis and kidney failure, and no one was at all bothered as it wasn't life-threatening. Eventually I discovered only minoxidil *might* help, but it wasn't guaranteed. I was told to use Johnson's baby shampoo as it's very gentle. I'm lucky - my hair did eventually start to grow back - but I'm still using baby products. . . I think a hair/scalp expert is best placed to help you. Good luck!

[Liz2304]

My hair was falling out before any of the medication it was one of the signs something was wrong , which finally led to my SLE being diagnosed.

[Lizzo32]

Hi,

I totally sympathise and empathize.

I have confirmed diagnoses of SLE, DLE, SCLE, am a type1 diabetes sufferer for nearly 35 years, have primary hypothyroidism plus psoriatic nail dysfunction now appearing (brittle, sharp, split) = sad 😢.

Before my diagnosis of SLE, like yours it was very thick now it’s thin, wispy, dry and tends to fall out➡️ the acknowledged “ lupus hair” symptom.

Before my 2016 various lupus diagnoses I shaved it all off in complete frustration BUT it grew back with a few bald patches due to better lupus management control: MMF, levothyroxine etc.

My reasoning : lupus hair (recognized condition) is an autoimmune condition and autoimmune alopecia is definitely associated with T lymphocytes and/or autoantibodies attacking hair follicles which cause the hair to be weak and fall out!😱 but the good news is that if your medication is working OPTIMALLY for you and dosages are correct(we’re all different) then it will grow back and less will fall out!☝️

Others here have highlighted drug side effects eg METHOTREXATE, MEPACRINE etc? Have never been on those so have no experience of those adverse side effects.

Hope the above helps?

❤️

BTW Beware of hair clinic technicians and hairdressers etc. They do not usually understand lupus and its complicated medications we have to take but may have some knowledge of autoimmune alopecia. Highly expensive “hair loss” creams, lotions, shampoos etc will NOT do nor work!

Don’t be taken in by the Tik Tok, YouTube adverts on hair loss “treatments”/nonsense !☝️

[Liz2304]

Thank you so much for your advice its nice to know people are dealing with similar issues as me 🙂