View Full Version : Hair Loss?

06-05-2008, 03:58 PM
Hey Folks

Just popping in from my vacation to ask a quick question (and of course because I'm missing you all terribly :) )

I've started to hurt again this past week, mostly in my wrists and my pelvis so I think I'm possibly having a flare even though the plaqunil has been working so well.

Anyway, I seem to be molting suddenly. Every time I run my hand through my hair it comes away with about 5 long strands of hair, which in a day ends up being quite a lot. I'm constantly picking it off my clothes etc and its starting to worry me.

am going to try and see a doctor about it as soon as possible but until then, can those of you with this problem tell me. With Lupus does the hair usually fall out in clumps or is it more like a general thinning like what seems to be happening to me?

Thanks again ~hugs~


06-05-2008, 04:20 PM
I was just reading to find out about this. I don't have a diagnosis or anything, but my hair has been thinning like this. I thought that it was normal because I do tend to shed a lot, but today I found a bald spot near my hair line on the side of my head. I am pretty upset. :( I wish that I had an answer. I just have the same question.

06-05-2008, 04:28 PM
I don't have an answer about the hair.

I'm on plaquenil as well, and I've been in a great deal of bone pain today. My feet, shins ribs. I just hurt.

06-05-2008, 05:11 PM
Hey Claire....

I hope other things are better for you...and your vacation was marvelous..

Thinning hair is common with IT...Mine thins all over, with the root bulb, follicle on the ends. Do you have the bulb? If so, it isn't breaking off then. Also medication can cause hair to become dry and brittle, and break off then.

When I have a thinning bout it grows back. I look like I have a halo of fuzz when the light is hitting my head. The hairs growing amongst the long hair...that is a sign of a flair without pearls, or just having IT...or could be just stress...

Naturally we shed about 50 -100 hair strands a day...do you think it is more than that? Do you leave lots on your pillow?

If you have discoid IT..you will have patch loss and no regrowth from my reads.

Have you combed your hair less lately throughout the day than you use to?

Follow this link for other reasons...images...



06-06-2008, 08:40 AM
I had the all over thinning. No bald spots though. Fortuantly it finally slowed down. It was so bad, it came out in handfulls when I washed my hair. I kept a bottle of Draino in the bathroom and poured it down the drain whenever I washed my hair to keep the pipes clean.

06-06-2008, 10:29 AM
It is common, with Lupus, to lose and/or have thinning hair. I lost ALL of my hair in three locations on my scalp. It is usually a symptom of active disease (lesions in the scalp, discoid lupus, etc.) Fortunately, in the vast majority of us who have suffered hair loss, the hair re-grows after successful treatment, though hair regeneration is often notoriously slow.
Hair loss occurs in 50% of people with Lupus. Most of the time, it occurs during or following an acute flare up and is usually accompanied bya fever.
Hair loss may also be caused by infection or by the use of corticosteroids or other lupus medications. A severe lupus flare could result in defective hair growth, causing the hair to become fragile and to break easily.
But, as I mentioned earlier, the hair usually grows back. For me, it grew back in a totally different grade and thickness (or lack thereof), but it did grow back!

Peace and Blessings

06-06-2008, 06:41 PM
In having lupus for 22 years now, I have lost my hair 3 times. The first time it began growing in while it was still coming out. I believe it had started to come out at the root, then as the meds began doing their job, it was just brittle and breaking as the new growth was coming in. When I finally went in to get it cut, it was about an inch and a half long. The second time, it was a very slow thinning (over 3 months). I had large bald patches. Then the high doses of prednisone made it very brittle. That time I was able to get a very short pixie while the bald patches grew back (lucky they were all in the back). The last time it went really fast. I went from bra strap length hair to fuzz on the scalp in less than 3 weeks. So I'm always paranoid about my hair. A few weeks ago this recent flare I began noticing a few more hairs on the pillow, but the meds seem to be doing their job and I haven't noticed any more hair loss YAY!

Like Saysusie said, each time mine came in different. Before Lupus, my hair was just sort of wavy. After the first loss it grew in SUPER curly! And the color became more auburn instead of just reddish brown. The second time it was less curly and more auburn. And now I have wavy/curly mixed with a solid red/auburn color. I do also get my hair detoxed at my salon. It strips the medication build up in your hair (the roots). (Only do this when you are NOT in a flare!)

06-07-2008, 08:45 AM
Hi all,

I have a similar question...but a little different. I haven't lost hair on my head but have lost it under my arms. I'm not complaining...I don't have to shave there anymore but just just wondering if this is "normal" for anyone else?

I also have been on 20 mg of methotrexate for over a year so am wondering if this could be the cause or could it be just good old sle?


06-07-2008, 12:26 PM
Thank you so much for all the responses everyone!

I just wanted to add a note for mackie. I haven't lost any under my arms but I have a large bald patch uhhhh down below that I didn't have before :oops: Not sure if its related but I would assume it is. Hateful disease!

Thanks again folks ~hugs~

06-07-2008, 12:36 PM
Hey..me too. My patch has thinned too... :shock:

My underarms could have been Madonna's but today barely enough to make a one turn spit curl.

Legs..one, two razor strokes..done. Sparse.

Overall my body hair has thinned...especially after my last doosy of a flair without OPI nail polish....


06-07-2008, 12:39 PM
I'm not saying we're old...

I think this is normal as one matures....

ducks and runs.....

PS me too

06-07-2008, 03:37 PM
Hmmmm...very strange. I still have the hair on my head, all my "girl" hair down there, and all my leg hair that I always had. Just the hair under my arms has disappeared. Zip, nada, nothing. I don't miss shaving my pits but was just wondering if anyone else has had this experience from sle or if maybe it was the methotrexate.

Now if only my legs would do the same thing......


Pretti in Pink
06-08-2008, 05:39 PM
I've only experienced the slow growth of hair on my legs, everywhere else growing like a weed. But when I was on cytoxan the hair on my head and under my arms were very thin.

06-09-2008, 07:31 PM
I have a thin patch right above my left temple area...and that is where I have these "break outs" periodically.....

06-13-2008, 11:03 AM
My hair starts thinning everytime I go into a flare. I also notice that it gets very 'flat'. I will drag myself out of bed in the morning to get ready for work and am trying to get some body with the round brush but my hair just lays there. A week later and I am feeling better and my hair perks back up, it is really weird, it's like my hair feels bad too. :)

I also lost about 80% of my hair a couple years ago. It started growing back while I was losing it so I had the fuzz halo too. Wasn't very attractive. I got a pixie cut though and that looked much better, even gave the illusion of less prednisone puff in my face.

Anyway, my rheumatologist said it is hair loss from lupus and I have heard the tiny little hairs that are growing back called 'lupus hairs'. I think it is just a symptom of lupus that some people have and some don't.

06-13-2008, 11:45 AM

I have problems with thinning and loss of hair too. The hair on my legs has thinned out big time too. My hair on my head thinned out a lot from what it was. Right before I got diagnosed I had bald spots on my head and it was ugly to say the least and scarey too. The hair under my arms and down south have thinned out too. I think it is absolutely due to Lupus. The medicines help some, but I guess this is a problem that is comon to a lot of us with Lupus and especially with the folks that have the discoid from of the disease.