Question:
an wrote: > I have discoid lupus and have experienced a great deal of hair loss. > As a female this has been very distressing. I have had discoid lupus > for 11 years. I have tried creams (they thin the scalp), injections > into my scalp and plaquenil (caused nausea). I am at my wit’s end. I > have lost 50% of my hair and have resorted to hair weaves. This is > very depressing and I would like anyone who is in my situation or has > any alternatives to email me. The doctor’s have been no help and this > is creating a lot problems in my life. As a person who is very > confident and professional this is not an easy thing for me to deal > with. Help ! > — > Posted via Talkway – http://www.talkway.com > Exchange ideas on practically anything ™.
Although I have systemic lupus, I still have hair loss at times. I take plaquenil, but that doesn’t seem to matter. I use Rogaine for Women. I guess it works because my hair has grown back. It seems I lose it after a flare and then it comes back. I don’t know if it is the Rogaine or if it just comes back on its own. I panicked when mine first started falling out and you could see my scalp. I have thick, naturally curly hair and it was noticeable. When my Dr. started me on methotrexate he gave me folic acid and Leucovorin to counteract the metho. That seems to work well too. I hope someone will have a better answer for you. Maybe there is an herb that will help. Mary
Response:
I don’t know how bad the nausea was with the Plaquenil, but I have found that it helps a lot to split the dose and take half in the morning and half at night. Plaquenil had really helped me with lupus (systemic), and it seems that my hair has stopped thinning out. Anyway, best of luck with this! Anne – Hide quoted text — Show quoted text -an wrote in message … >I have discoid lupus and have experienced a great deal of hair loss. >As a female this has been very distressing. I have had discoid lupus >for 11 years. I have tried creams (they thin the scalp), injections >into my scalp and plaquenil (caused nausea). I am at my wit’s end. I >have lost 50% of my hair and have resorted to hair weaves. This is >very depressing and I would like anyone who is in my situation or has >any alternatives to email me. The doctor’s have been no help and this >is creating a lot problems in my life. As a person who is very >confident and professional this is not an easy thing for me to deal >with. Help ! >– >Posted via Talkway – http://www.talkway.com >Exchange ideas on practically anything ™.
Response:
HI An, I can truly unerstand your problem! I am no longer a professional since I was able get on disability in 84. I started losing my hair around 90. I am embarrassed to let people see mine, I have resorted to hats since 90 but it is immpossible to wear one constantly. Iaquired a wig from a cancer patient friend and feel better, I have been told the Lupus foundation can help with attaining one. I heard of medicine for it but I coundn’t pas the physical. There are times when I don’t care what people think of my hair problem. I lose family, friends, jobs, etc cause they can’t handle my lupus. But I have found other family, friends, interests that do not care if I’m bald or beautiful and I stick with them. Hope this helps some. write soon, Elfgirl – Hide quoted text — Show quoted text -an wrote: > I have discoid lupus and have experienced a great deal of hair loss. > As a female this has been very distressing. I have had discoid lupus > for 11 years. I have tried creams (they thin the scalp), injections > into my scalp and plaquenil (caused nausea). I am at my wit’s end. I > have lost 50% of my hair and have resorted to hair weaves. This is > very depressing and I would like anyone who is in my situation or has > any alternatives to email me. The doctor’s have been no help and this > is creating a lot problems in my life. As a person who is very > confident and professional this is not an easy thing for me to deal > with. Help ! > — > Posted via Talkway – http://www.talkway.com > Exchange ideas on practically anything ™.
Response:
I have discoid lupus and have experienced a great deal of hair loss. As a female this has been very distressing. I have had discoid lupus for 11 years. I have tried creams (they thin the scalp), injections into my scalp and plaquenil (caused nausea). I am at my wit’s end. I have lost 50% of my hair and have resorted to hair weaves. This is very depressing and I would like anyone who is in my situation or has any alternatives to email me. The doctor’s have been no help and this is creating a lot problems in my life. As a person who is very confident and professional this is not an easy thing for me to deal with. Help ! — Posted via Talkway – http://www.talkway.com Exchange ideas on practically anything ™.
Response:
I have been living with lupus for the past 22years and I have stories to tell about my battle with this contrary disease. this space is not big enough to begin my living hell experience with this chronic illness I have had from hair loss to being in a coma four times, to anorexia, to being psychotic,everthing that can possibility could happen. please e-mail me at DHFJGF1 @ aol.com for more information.
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