Losing hair with auto-immune disease/lupus. Help!

Alayna.SandeAlayna.Sande Registered Users Posts: 1
Last night I took the dreaded look at the back of my head. I knew I had been losing volume but I didn't want to face why. I have a large patch of my head losing hair rapidly.
Over a year ago I started having terrible joint pain and extreme fatigue. I started going to a rheumatologist and he suspected I had Lupus. He put me on Plaquanil and promptly retired. I went to another doctor who put me on Methotrexate. It worked a little, but it made me sick and my hair started falling out on top of my head. I was on it for about eight months before I couldn't stand it anymore. My doctors have refused to put me on anything else since I don't have a "concrete" diagnosis (but that's another story).

Anyway, I have been off my Methotrexate for 6 months and the hair on top of my head has started to grow back. In the last few weeks I've noticed my hair being shed in larger amounts and then last night saw the large thinning patch on the back of my head.
I know losing hair is a symptom of Lupus. Has anyone had this happen to them as a part of an auto-immune disease? Is there anything that helps? It may sound ridiculous but my hair was the only part of my body that was ok and that I could do anything with so losing that last bit of myself is really upsetting me.


  • curlypearlcurlypearl Registered Users Posts: 12,231 Curl Connoisseur
    Hey Alayna, I realize you posted a long time ago but just in case you are still on the boards I wanted to say I hope very much that you are feeling better. Does Rogaine (minoxidil) help when the thinning is caused by lupus?

    Good luck - please post back if you see this. If you need any suggestions for how to use minoxidil (you can get it generic at most drugstores) I'll be glad to weigh in.
    2/c Coarse hair med. density.
    Highly porous. Color over grey.
    I love all the Curl Junkie products. Still experimenting with gels and curl creams. Still hoping for 2nd day hair....
    Every day is a gift :flower:
  • CorkeyCCorkeyC Registered Users, Curl Ambassador Posts: 3 Curl Neophyte
    Alayna, I have an autoimmune disorder called lichen planopilaris that causes permanent hair loss. My particular type is frontal fibrosing alopecia, which is the loss of hair starting at the front hairline. My dermatologist has me taking Plaquenil (200 mg twice a day) and using Protopic, an immunosuppressant ointment, around my widow's peak area (where my hair is thinning/receding). In addition, she recommended Rogaine foam; it not only encourages new hair growth, but also keeps existing hair in the growth phase longer, which keeps hair from shedding. Good luck!

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