I am seeing the best dermatologist in the country on Friday. I have been battling with diffuse hairloss since March of this year. It bega with severe scalp burning and pain, an inflamation of some sort. Hair has thinned out about 1/3 through the entire head.
Prior to this about 4 years ago, I experienced some odd numbness and tingling and sunburn feeling on my face and arms - I was put on an antidepressant and it made me a calm numb person. Eventually this all passed and i felt great.
After having my son 2 years ago, some of the skin burning started to come back, followed by this hair thing in March.
I've read about all kinds of female hair loss however most of these people do not feel sunburn faces and arms or are awaken with searing scalp pain. I also get blue feet when cold docs said not classic raynauds but still they should not get blue. Other symptoms are achy joints that come and go, fatique, inability to sleep, and the most disturbing, thinning scalp.
If any women out there who have lupus had hair loss with it would you mind posting your stories? I hear it can be one of the first real symptoms of the disease. I have had my ANA and ESR checked over the years all normal even recently.
I know its not discoid leisons because there is not one particular spot, its really the entire scalp that is inflamed, so if you have SLE I"d love to hear from you.
Hi. I had the worst breakage along my hairline, plus general thinning and breakage throughout. I was Dx'ed with the SCLE in 2000 and was told I MUST wear sunblock, hats with brims, long sleeves, etc. The good news is that sun protection & Plaquenil have helped me on all fronts (fatigue, migraines, pain, anemia, photosensitivity, GI & urinary issues, etc.) And my hair was never exactly my crowning glory anyway!
Do you "do" sun? And are any meds you now take ones that can increase photosensitivity?
I hope your upcoming dermie appt. goes really well! Bye for now, from Vee
I also suffer from all over hair loss. I used to put my hair in a ponytail and I could just barley get my eleastic around twice, not I can wrap it around 4 times! I have brought this up to my doctor and the only thing he said was to try Biotin. It didn't help. I also get a bright red scalp from time to time. It is NOT sun related, the 1st time it happened the sun hadn't been out in days. It covered my entire head. It comes and goes and does not always burn. I brought this to my doctor also and he just looked puzzled and didn't have any input. Most recently I have been having a bad reaction to the sun. I'm using 45 SFP, hats, long sleeves, and just plain staying out of the sun. But I've been breaking out in hives all over my after being in the sun. I also get a burning on fire feeling on my face with deep purple/red splotches. ick!
Good luck with your appointment! Let us know what they have to say.
I don't have any scalp pain or redness but I do tend to lose a lot of hair now. I also have SLE. My problem is this...it didn't start happeneing until after I had my Lupus baby. What I mean is, women tend to lose a bunch of hair after having a child. That is because when we're pregnant we STOP lsing hair like we normally do. That is why pregnant women get thicker hair. It's not really getting thicker, we just lose less. Now after you have the baby you lose all that hair you kept. Now with most women the losing of the hair stops and we get back to nrmal. After I had my last child, while I had Lupus, it was like I never stopped losing the hair! Also, my whole hair appearance and texture changed! always had VERY thick, only skightly wavy hair. Now my hair is SO bushy, frizzy you wouldn;t believe it! I have to put tons of gel in it just to TRY to keep it in check. My hair is in no way thin, but now it is very course and frizzy...I hate it! Every time I wash my hair the drain is full of hair, and I find hair all over my clothes, the floor, and the brush gets full every time I bursh my hair. I don't know what the heck is going on lol.
I don't know if this will answer your questions - my mom (now passed away), had the classic Raynauds disease in her fingers from the time she was in her thirties. In her sixties, she started getting numbness and blue in her toes. He fingers actually got white and she even lost part of some of the tips.
She also had a very sensitive scalp, very thin hair and very sun-sensitive.
She also had many miscarriages - I know this happens to those with Lupus.
I often wondered if she had Lupus, but with her many other health problems, the doctors never got that far. She was a heavy smoker and died this year from emphasima and pnemonia (sp?).
I was tested for Lupus about 10 years ago, but was only diagnosed with hypothyroid, and my Aunt (mom's sister) is on many of the medications that people with Lupus take, but her Rhumatologist says it's Rhumatoid arthritis and Fibromyalgia - not Lupus.