Hi hon,
Fortunately I was blessed with "big hair" so when I was losing it it wasn't really noticable. It got real thin there for awhile and now it's growing back in- of course, the new hairs are gray! I'm 47 so that is to be expected. I noticed on your profile that you don't list any medication, are you on anything for the lupus? Most common medication is the plaquenil- it stopped the rash and the hair loss within a few weeks for me. Now, I get hair loss when I'm in a flare. Hang in there and talk with the people here, we all understand what you are going through. xoxoLyn

I am losing hair also. I have been for about three months. I knew something was wrong with me. I went to the dr. and after blood tests was told that I was boderline / positive for lupus.

My daughter's hair is constantly falling out from Lupus. She has to sweep her bathroom floor every morning after brushing her hair. Thankfully, hair is always in a state of growth so try not to worry. This is a common problem even for people without Lupus. I have CP and my hair falls out from the drugs I am on.

I lose hair also. I take 5mg biotin everyday for it as well as use hair care products containing biotin. I experience alot of regrowth from this regimen.

Yes...hairloss was the symptom that scared me enough to get me into the doctor when I started getting sick. I was losing a ton of hair. Once I started Plaquenil, that was the first symptom to go away. Now, I'm on MTX, so I'm back to losing hair again.
If you're not on Plaquenil, I would recommend getting on it soon. It will help.

I also had long thick hair all my life and looking back now a few years ago, my hair would fall out in strands all over the floors before I was diagnosed. After being diagnosed and on prednisone it was coming out in clumps in the shower and noticeable all over my pillow. I started getting patches on my scalp and my hair thinned so much. I wasn't happy with how it was looking so I decided to cut it very short. Anyhow I cant say for sure if it's the plaquenil that made it grow back or the lower dosages of prednisone or if it just cycles that way, but it can grow back. I didn't use any other products. Mine is growing back drier and curlier tho, and trying to be patient. Oh yea I notice white hairs too, but I hear that can be "new" hairs ocming in. Do you notice sometimes it's half white and half color? Still it looks white so I pluck out one or two here and t here, hehe. Anyhow hang in there, Anita. It's no fun losing your hair but you're not alone.

Yeah I lost a lot on the top of my scalp, but it grew back.Did worry me for awhile....Deb

When I lost most of my hair shortly after diagnosis, my NP put me on Folic Acid. It completely grew back and hasn't fallen out again. I also think it helps me overall. I have ran out of it at times and I feel more run down and tired without it. Hope this helps, ask your doc. It is not an expensive drug. :) C

I have been experiencing hair loss for about a month now, i have just recently had an appointment with my specialist who said this is the effects of a Lupus flare and its just got to take its toll. I am devastated beause there is nothing i can do about it. I read on another group that Bioptin can help with this i am thinking of giving it a go.

yes, I am losing hair also.. it comes out in clumps when i wash it and its all over my brush and my combs and split ends galor... but it doesn't last long.. just try not to stress out about, you will not go bald, you will just be a little thinner for awhile

Yes I do,wene first taking Plquenil my Doctor gave it to me so I wouldent loose my hair,but I dident begin to loose my hair untill I took the Plaquinil. I hate brushing my hair after washing it cuz all the hair that comes out in my brush. Yes this is normal for US.

Same with me. When i started taking plaquenil and medrol my hai fell out so much. Its still falling out alot and it sucks and is very frustrating. I can seriosly sit there all day and pull out strand by strand, sometimes 5 strands come out at a time. =((

Hi,

For me, the hair thining out and shedding seem to go hand in hand with the flare ups. I pull back my hair into ponytails or a bun so its not so noticeable.(I use plastic hair clips-gentler on the hair)

MY hair has definitely thinned. I don't know if it is the disease or the meds. Either way, I guess I've just accepted it along with the extremely dry rough skin, blurred vision, rhumy, light sensitivity, etc. I HATE IT ALL!!!