HI JANE... I WAS HAVING THE SAME PROBLEM AND I KNOW HOW IT HURTS.. I AM SORRY YOU ARE HAVING TO DEAL WITH IT ON TOP OF EVERYTHING ELSE...... A FRIEND FROM HERE TOLD ME ABOUT FOLIC ACID... I TALKED TO MY RHUEMY AND SHE PUT ME ON IT AND IT HAS HELPED ALOT!!!! I NOW TAKE LOTS OF VITAMINS TOO... I AM NOT TELLING YOU THIS IS YOUR ANSWER BUT TALK TO YOUR DOCTOR MAYBE IT WILL HELP YOU...GOOD LUCK SWEETIE.... HELYN

im 31 yrs and my hair has been falling out by hand fulls for a while. it had slowed down a bit the past few months but im not sure why. i have SLE Lupus. i have only been dx since 07. it falls out in spirts. sorry i can't help much....

Thanks Tina and Helyn,
Helyn... I know you still have hair on your head! How about you Tina? I started out with thick hair. Now my hair is thinner than ever but still covers well. My fear is that it will get to the point that it's noticable.
Thank you for responding to my post!
Jane

HI JANE... YOU ARE TOO FUNNY....FROM MY PICTURE IT LOOKS LIKE I HAVE LOTS DOESNT IT... BANGS AND CURLING WHATS LEFT ON TOP HAS HELPED.... IF I PULL IT BACK OFF MY FACE YOU CAN SEE THE BALD SPOTS THAT ARE STARTING TO GROW BACK...ANOTHER TRICK I DO IS WHEN I BLOW DRY I DO IT UPSIDE DOWN WITH A LITTLE HAIR SPRAY AND SCRUNCH IT... I NEVER COMB IT , AND ONLY USE A PICK...IT IS VERY THIN AND FINE NOW AND VERY FRAGILE...IF I PUT IT IN A PONY TAIL ITS ONLY ABOUT THE THICKNESS OF A PENCIL.... I ALSO HAVE DYED IT BACK TO ITS ORIGINAL YUCKY BROWN SO IT LOOKS LIKE THERE IS MORE OF IT AND IT HIDES THE GRAY......AT ONE POINT IT WAS VERY NOTICEABLE AND GAVE HUBBY AND MY LITTLE BROTHER LOTS OF AMMO TO RETURN FIRE FOR ALL THE TEASING I DID TO THEM...LOL I AM GLAD YOURS ISNT REALLY BAD AT THE MOMENT... I THINK IT IS A LUPUS THING THOUGH... AS IF WE DONT HAVE ENOUGH CRAP TO DEAL WITH...I TOLD HUBBY I CAN HANDLE THE NEW WALK [LIKE AN OLD WOMAN] THE LOVELY NEW SHAPE [ROUND].. THE AWFUL DISCOLORATIONS ON MY FACE AND CHEST [THANK GOD FOR BARE MINERALS] BUT I CANNOT DO BALD....NO WAY NO HOW!!!!!!UNLESS OF COURSE IT ALL DOES FALL OUT, THEN I GUESS I WILL HAVE TO.BUT FOR NOW I WILL FIGHT IT AND PRAY...HAHAHAHA!!!! LOVE YA DARLIN ...KEEP YOUR CHIN UP!!! HELYN

My doctor put me on 800 mcgs. of folic acid daily when I started taking methotrexate shots. However, my hair had been coming out whenever I wash it to the point of clogging up my shower drain. The folic acid has helped some, along with the fact that I have naturally curly hair ... which makes it look thicker than it truly is.

I read somewhere that the supplement, biotene, is supposed to be good for skin and hair.

Also, coloring one's hair can affect it falling out when you have Lupus.

Anyway, I wouldn't hesitate in taking the folic acid. I'd ask the doctor about the biotene though as I don't know if it would react with your other medications.

Good luck and, remember, the hair DOES grow back in most cases.
peace and love .... Kyle Anne

Thanks eva so Kylie Ann. It is a comfort to know it will grow back. I guess that's what I was most worried about. Adding baldness to all the lovely physical changes this disease brings would be terrible.
Jane

Jane,

There's another possibility> Although hair loss CAN be from lupus, it doesn't mean it is. Menopause and stress are two common causes of alopecia.

I suggest that you get your doc (maybe a dermatologist) to check it out. Rule out other possible causes. Some times something as simple as low blood levels of certain minerals (like folic acid) can increase hair loss.

I don't remember what you're taking, but a number of lupus drugs (like MTX) affect cell division and lack of cell division keeps new hair from growing in and can make it SEEM like you're losing hair when it's that new hair isn't coming in. Are you noticing more hair in your brush or on the floor? Or does your hair just not look as full. (I know you said by "the fistfull" but it could be you're just using the expression.)

I am thankful that this is one problem that I haven't had since right after the birth of my daughter. Then my hair fell out in handfuls too, but that's normal post-birth.

Tracy

Hello,

I had this problem when I was first diagnosed. I use to have long beautiful hair down to my waist for years up until my early teens. After being diagnosed it started to fall out, although scary, after a couple months it started to grow back. It use to grow a little over an inch a month. Now it grows about half an inch. I use pantene shampoo, I try not to use hair dryers, straightening irons and dyeing it. I also take folic acid. I would talk with your doctors if he/she can give you vitamins, also protein helps grow hair faster. But be cautious and just ask. I thought losing my hair was depressing but you can also use extensions, wigs ( like I used at first). For me and others hair is important part of who you are at least in my case it is part of my identity since I have had it for so long. Dont beat yourself about it. Best wishes!

Thank you to everybody who replied to my post. One thing I didn't mention is that my scalp feels bruised a the root of the hairs. I remember this feeling when I lost all my hair from the liver failure. I do take a multi vitamin. I will add folic acid after speaking with my Rheumy. I did lose some hair when I went thru menopause but this is different. My brush is full every week, there's hair in the drain and on the towel and in my mouth after a shower. BLahhh! I have had very thick hair my whole life and now it is almost thin. Good thing I had lots to begin with.
Again thank you for your advice.

Hi Jane for yrs i have has hair loss and my doc put it down to the meds i take for my DVT and PE , well befoe i was told i have SLE and now they decided its the pupus causing my hair loss. you know when i go have my hair done i feel like crying as the big mirror infron of me give sme a very good view just how bad it is at times . Nothing i can do but smile and get on with life .

Terri hxhxhx

Jane

I started losing my hair many years ago after a big flare. At the time I lost pretty much my whole hair line and a few spots on my head. I should add that at the time I had a rash all over my face and body so I assume it was in my scalp as well. Back then there was no plaquenil so there wasn't much they could do for me. I thought it was going to be permanent. It was devistating. I know it's only hair but most women understand how important it is to our being.

Anyway, although I never got my hairline back most of it came back leaving me with very fine hair and no bald spots - better than nothing I guess!

I had started losing my hair again last year and I know it was due to stress not lupus or meds. My hairdresser suggested folic acid - you guys are so smart - and I really think it worked My hair has been hanging in there - no strands in the sink - hurray! There's also a product called Nixon (I think that's how you spell it) and it's for thinning hair. I've used it and it worked very well.

Finally, I hope you checked with your doc about this. It may be related to some meds you're taking or the lupus itself.

Sorry for the novel. Wishing you all good things.

Dale

The rheumy asked me this question,, and this is something that has been happening for the last couple of months. My family says its driving them crazy because they see my hair everywhere. I started to take folic acid and hope it will help. I can tell you I have never had this problem before. Im not dx with lupus but doctor is sure its a systemic problem. I will get the dx in april.

Oh yeah does anyone know where to buy a hair net? lol

Mine tends to fall out every few months. I have long and fine hair so really notice when it starts coming out.

Hi Jane. I just wanted to add. The pain and tenderness on the scalp was worse for me while trying use regular shampoo. I use Johnson and Johnson baby shampoo when it gets bad. And as bad as this sounds I only brush it when I absolutely have to. I use a lot of spray detangler to make this easier. Hope this helps.
Hang in there- Sue