View Full Version : Help Severe Hair Loss

06-29-2006, 03:28 PM
I have been diagnosed with lupus for about 1 year now, and I have started having severe hair loss, I have talked to my doctor about it and he just tells me that it is because of the prednisone and the hydroxychloraquin that I am on? I am not sure what to do and it is not getting any better. If anybody has any suggestions that would help it would be graetly appreciated. I really don't want to go bald, and also I am located in Colorado Springs, Colorado and I am having a very hard time finding a support group here. If anyone knows of one let me know.

Thank you in advance.


06-29-2006, 03:43 PM

I'm in Golden Colorado!! Nioxin shampoo and scalp therapy has helped me a lot!!! I've been dx'd just about a year too! Last July!!

Glad you found us!

06-29-2006, 07:13 PM
Thanks for your reply, I will have to try the Nioxin Shampoo.

07-02-2006, 04:49 PM
I know how you feel about the hair loss. I was newly diagnosed only on March 2006. Little by little I'd notice some hair falling out. My hair's been getting thinner and thinner. I used to have long thick hair, and now, its sooo thin. I think its the lupus that's causing the hair loss for me. I've noticed the hair falling out before I was on prednisone. I look at myself in the mirror each morning and want to cry. :cry: I miss my hair. I even bought my first clip on ponytail. I just started using the Nioxin product this weekend. Hope it works for me like it worked for others... Keep me up to date with your Nioxin progress... :wink:

07-03-2006, 09:25 AM
Hang in there Buddha Belly, It will get better, I went to the doctor this morning and he told me that the lupus and the prednisone puts your hair growth on a schedule, Normally your hair falls out in intervals out of different places at different times, and when you have lupus the disease makes your hair shedding syncronized and it all sheds at the same time, So he told me that instead of having hairloss a little at a time that I will now have "seasons" like spring winter ect. where my hair will fall out and grow all at the same time. He told me that the disease and the prednisone will have to same effect on my hair. He also told me that there is light at the end of the tunnel and I won't go bald!!!, then he said just consider this season "fall" because my hair is falling out, Ha Ha. At least he has a sense of humor. So just hang in there. As for the nioxin, I have been using it for about a week or so and I can already tell a difference so I would suggest it to anyone that is having problems of this kind. :roll:

07-03-2006, 11:30 AM
Wow, that is interesting about the "seasons." I'm not on prednisone but my hair is still falling out.

I have only used the nioxin for two days, but I am pretty sure there was less hair in the shower drain than usual today. I am optimistic!

07-03-2006, 01:44 PM
Thanks for the good news Jasminestellick! :D It cheered me up. :) I like that analogy about the seasons of hair loss. Now I understand why my hair is falling out. Good news though... I've noticed little hairs sticking straight up from the top of my head and some on the back. They're little baby hairs that are growing back. I'm so happy! :D The Nioxin is doing something to my head. Its like miracle grow for the scalp! I also noticed ever since I've started using Nioxin, less hair has been falling out. :D Can't wait til my hair grows back! :D

07-03-2006, 02:37 PM
Budda Belly,
I am glad to hear that you are in better spirits, As far as those little hairs that you are seeing, they are called "lupus hairs" yes they have a term for everything. Good luck with everything and if you just need to vent type me a line. This can be a very hard thing to deal with by yourself and family and friends don't always know what to say because they don't live it everyday. Keep your chin up!!!!! :lol:


07-11-2006, 06:38 AM
Mine kind of comes and goes but I lost a lot of hair before I was dx'd.

I started taking biotin supplements along with Omega oils (it's a mix if fish, flax, and borage) and that seems to have slowed it down. And the hair I have looks healthier.

07-11-2006, 06:54 AM
I"ve been using Nioxin for a little over a week now. I've noticed some progress, just wish it would work faster. My hair is still falling out, but I've been finding less amount of hair in the drain. So that's a good sign! :P I'm just getting anxious, because I see the little hairs sticking up everywhere. I've been using some hairspray or gel to tame those little 'lupus hairs.' I'm so happy that my hair's slowly coming back. :D I've also been taking Biotin as a dietary supplement and fish oil (which also helps with inflammation). Hope I get the same positive results that you got Ariel... Has all your hair grown back yet? I used to complain about how thick and long my hair was... Now I miss it so much. :cry:

07-11-2006, 08:34 AM
I'm glad it's going well for you two... I thought the Nioxin was helping for a day or so, but it seems to be falling out faster than ever now. I've been using the Nioxin for only ten days.. and there is more hair than ever in the drain. It feels so thin when I run my hands through it. :cry:

It's not that I'm obsessed with my hair or anything - it just feels like the last straw - what ELSE am I going to loose?!?!

Grr. Sorry - sort of depressed lately.

07-11-2006, 08:59 AM
My hair has gotten very thin too. This has gotten me so depressed. I can't do much with my hair right now. If I wear it down, everyone will notice my thin hair. But if I wear it in a pony tail, everyone will see my bald spots. So, I end up wearing it in a tiny bun. I sometimes wear a clipon ponytail when I go out. Its so sad, I know... I miss my hair. I get so self-conscious during the day at work, checking my head whenever I can, if any bald spots are showing. I started noticing my hair was falling out since February, before I was officially diagnosed with the Lupus. I ask myself each day, "when is it going to stop falling out?" I'm trying to stay optimistic. I do see little hairs (lupus hairs) growing back. I even see patches of hair growing back as well. Is it the Nioxin and the vitamins causing my hair to grow? HOPE SO... Is this just a phase? Will my hair grow back to how it was? This whole situation is frustrating me. I shouldn't complain so much, because I know there are others who are coping with other symptoms worst than hairloss. Sorry for being such a cry baby about this... :cry:

07-11-2006, 09:15 AM
I know it's hard, but it DOES take time, and SHOULD help... I can't say it helps everyone, but I know it helped my hair a lot... Give it til the end of the bottle and if it still isn't helping, don't get anymore! You should see SOME kind of improvement by that time! Another thing that I was always told was good for hairloss is taking prenatal vitamins... And apparently good for your nails, too if you have nail problems! So that might be another avenue to try??

I've got my fingers crossed for you!!! Keep us updated!


07-11-2006, 09:22 AM
Prenatal vitamins? :idea: Where can I get them? Is there a special kind to get? I'm using Hair, Skin, & Nails Formula by GNC Women's. It has 2500 mcg of biotin. Thanks for the tip! :wink:

07-11-2006, 11:32 AM
I'm sure those help, too! I THINK you can get prenatal vitamins at any grocery store... I'm not really sure... This is only something I have heard... Actually, I heard it in beauty school when we all cut each other's hair and eventually wanted it to be long again... I was told that they help your hair grow... Not sure about thickening it up or anything, but it would stand to reason, yes?

I haven't tried it yet, but it won't hurt you unless there is something in them that your dr. says you can't have... And also maybe compare it to the vitamin you are already taking... It may not be much different... I dunno!


Glad to help!

07-24-2006, 07:13 PM
I've been using Nioxin shampoo and conditioner for almost a month now. I'm also taking Biotin and Fishoil supplements. I've noticed some progress: :D I find less hair in the showerdrain. I've noticed patches of hair growing in different parts of my head. I'm so excited seeing the hairgrowth, but, now I have patches of hair sticking out, like I have horns! :lol: They're sticking up so much that gel can't even hold it down. O well. I shouldn't complain, because its GROWING BACK! :) Can't wait because my hair is so thin right now. :( Seasons do change. I've been in the fall for a while, but, I see that spring is coming soon for me. :B-fly:

07-24-2006, 08:11 PM
I am SOOO happy to hear this Buddha - Even horns are a good sign. :evil: :lol: :lol:

I think that my drain clog was a little smaller today too. I have been using the Nioxin about the same length of time.

I also got the prenatal vitamin with biotin and the Omega fish oil, but forgot to take it the last few days.

Congratulations on the new hair, and thanks to everybody here who gave us the hair-saving advice!

07-24-2006, 08:21 PM
:P Hi Sheryl! I'm glad that you're finding less hair in the drain like me. :D Let's keep our fingers crossed, I think the Nioxin is really working along with the supplements! Keep in contact and I'll do the same. Share your progress experiences. I love hearing positive stories about hairgrowth, makes me feel better... :wink:

08-06-2006, 02:23 PM
I'm sorry for being so vain, I just need to vent out my frustrations about my hair loss. :bad-words: I'm feeling sad and mad at the same time. :( :x Hairloss is no big deal comparing to others' health issues, I know.... :( I'm trying to be patient, and I do see some progress, after using Nioxin for a little over a month. I now have patches of new hair growth sticking up on my head. Its so hard to find a way to flatten it out, I also have little hairs sticking straight up on top of my head as well. Now I know how Alfalfa feels (from the Little Rascals). :roll: I have 1 hairstyle that I use each day, because its the only thing that I can do with it. I pull whatever hair I have left in a loose bun, or on the weekends, I just wear a baseball cap. 8) I say a prayer for hair each day. :angel: Is anyone else feeling the same way or having the same problem as me? :cry:

08-07-2006, 07:52 AM
Sorry to hear your hair is frustrating you :cry: I can only relate to the new little hairs that appear all around the front of my scalp. I also have those pieces that stick up on the top of my head :lol: Hope it gets better soon for you.

08-19-2006, 06:32 PM
I've noticed my hair falling out since Feb. or March of this year. Its now August, and my hair is very thin, but, less hair has been falling out. (Thank goodness because I don't have much to lose anymore) :( Its slowly growing back. Will it fall out again once it grows back? :?

08-22-2006, 08:26 PM
I found out I had Lupus because my hair was falling out 2 years ago. I had several large bald patches on the top of my head. I wore a bandana or a hat everyday.What wasn't bald was very thin, I could see my scalp through it. My doctor sent me to a dermatologist who gave me about 20 small injections of cortizone in my scalp every 4 weeks to stimulate the hair to grow again. It worked but then about 5 months later it started again(months before my wedding!!) I didn't pick out what I was wearing on my head till about a month before the wedding. It all worked out fine though and came back. I have not had a problem with the total loss since(still thin but that's better) The shots hurt a little so you guys can find a cure with a shampoo that's great. I wish you luck and you are not alone

08-24-2006, 08:57 AM
Hi guys,
Just thought that I would drop a line to let you know that My hair is definetly getting better, it is still falling out but much less now than before, so hang in there everybody. I am still using the Nioxin shampoo and conditioneer plus because that dries my hair out so much I have been going to my hairdressor every couple of weeks for a deep conditioning treatment, That is helping a whole lot and it is not too expensive. So I wish you all luck and keep your chins up.

Jasmine :lol:

08-28-2006, 06:47 PM
Just an update on the hair situation... I'm still religiously using the Nioxin Shampoo and scalp therapy. Less hair has been showing up in the drain. My hair is still very thin, but I've noticed that my bald spots are gone. I guess hair is slowly growing back in those areas. :) I now have short hairs standing up and sticking out of everywhere on my head. Its out of control. :crazyeyes: I can't wait until they are long enough to blend in with the rest of my hair. I just want my hair to get thicker. :cry: I went to a wedding yesterday. I put my dress on, did my makeup, then it was time to do my hair. I just looked at myself in the mirror and almost cried. :( I didnt know what to do with it. Its too thin to keep down, or tie in a ponytail. All I was able to do was pin it into a little tiny bun. :(

08-29-2006, 12:04 PM

Hi Everyone,
I say that half smiling and half crying. Vanity oh Vanity, why do we prize our hair so? BECAUSE WE'RE WOMEN !!!

I finally accepted that the beautiful free-flowing locks I once had, will be no more. So I've decided to embrace the baldness, and let my personality do all the wowing (smile). Cause Lord knows, the prednizone has already had its' way with my body (if you know what I mean, moon face and all....smile). I'm not sure how that's workin' for me; but I am a hopeful idealist.
Lots and lots of love to you,

09-14-2006, 05:42 AM
When we are diagnosed with LUPUS ther are usually underlieing other auto-immune disease's at work.

One that will cause HAIR LOSS is HYPO or HYPER thyroidism.....without the thyroid HORMONE your hair will begin to thinout quite quickly.

I always know when I have forgotten to take my SYNTHEROID for a few days when I look in the shower and see my hair.

It is a simple blood test to check for THYROIDITIS.....a TSH and T-4 test will tell the DOC wether or not you have it and if you do a simple pill once a day will not only prevent your hair loss but BOOST your FATIGUE!!!!

Hope this helps

STJAMES :wink:

09-14-2006, 05:53 AM
THANKS for the helpful info! Fortunately, slowly but surely, I feel like a baby, with the little hairs growing in everywhere. I'm pretty excited! Just wish the hair would grow at a faster pace... :wink: Can't wait to wear my hair in a big ponytail again...

09-14-2006, 06:04 AM
Hi everybody - I haven't bee posting too much lately - I was on vacation in August, and when I came back, couldn't access the board for a week or so. :(

I am going to ask for a thyroid test at my next DR. visit, St. James, thanks for the info.

Anyway, I thought I'd give a hair report - after loosing HUGE amounts all through July the fall-out slowed (thanks to Nioxin, I think). Now I am growing back spikes just like Buddhabelly. I was so happy to see them, I cried. I don't care how goofy they look as long as they are hair!

My "hair guy" gave me a cute short cut that will help with the spikes.

He said that the reason we loose hair, is the body knows hair is not as essential as hearts, lungs, etc., so when it gets stressed or needs to let something go to focus on keeping the rest of us healthy, hair is what it lets go first..... interesting theory,eh?

Hang in there all of you!

09-16-2006, 12:15 PM
Can I get Nioxin at the drugstore?

09-16-2006, 12:41 PM
No Nioxin is a professional brand you have to get it at a salon... Beauty Brands is probably one of the best places to go price-wise or Ulta...

09-16-2006, 01:34 PM
I get the Nioxin at a store in the mall called Trade Secrets - its sort of a Beauty Supply store. It's about $14 each for shampoo ("cleanser") and conditioner ("scalp therapy")

09-16-2006, 03:16 PM
thanks Sheryl I went to the local Pharmacy and they didnt have it...I will try Sally Beuaty Supply.

09-16-2006, 04:28 PM
Sally Beauty won't have it. They will have a knock off but it isn't as good and it dries your hair out more.

09-17-2006, 01:14 AM
Will other Pharmacys have it then? Or do I have to order it off line?

09-17-2006, 07:38 AM
No only salons will have it... Cost Cutters, Fantastic Sams, maybe Great Clips... Or any other salon should have it.

I think you CAN order it online, but I don't know for sure.

09-17-2006, 07:43 AM
I did find it online

09-17-2006, 07:49 AM
This is another place I found Nioxin online

09-17-2006, 08:04 AM
If nothing else you want the cleanser and the scalp therapy. And when you use it, you don't need much of each, it's VERY concentrated and should last you a long time!

10-09-2006, 11:46 AM
Like Sheryl, I had my hairstylist give me a short "spike" cut...it's trendy and when I spike it with gel, the bald spots and the short hairs just blend in. Of course, I look like Dr. Seuss's Thing One and Thing Two, but what the heck.
with this last awful flare, even with Nioxin I am losing more and more hair. I don't think I will go with the wig thing...just too uncomfortable and too hot, and besides, I've never seen wigs that didn't somehow LOOK like wigs.
What I'm going to do instead is buy the most gorgeous silk scarves I can find in brilliant colors and wear them with STYLE AND PANACHE! Heck, maybe I'll start dressing in flowing black things and talking with a wierd foreign accent. :lol:

10-09-2006, 01:02 PM
I continue to battle the hair loss...and after I bought my Nioxin my hairdresser told me to save my money....it doesnt work...if you hair is traumatized (by lupus chemo or whatever) nothing topical will stop it from falling out. She said it was like hitting your fingernail with a hammer....it will fall off no matter what you do. I have a bald spot on the left side of my crown in back....a severe discoid killed the folicles and I was told by the derm the hair will NOT grow back there ever. I deal with it...and pray the thinning stops sometime soon. I think i may go shorter just so it doesnt look like so MUCH hair...right now it is past my shoulders. But if I go spiked the golf ball sized bald spot will be very noticable.

10-14-2006, 05:48 PM
I apologize for being so vain but I have a question about haircuts and hairstyles. :? The hair that I've lost is slowly growing back. Most of the hair that fell out were mostly at the back of my head. The hairs on top of my head is still pretty full, which helps because when I comb it back, covers the thin spots. I used to have long thick hair, but now its very thin. I've noticed that the patches of hair that's growing back is healthy and soft, just wish it can grow a bit faster, but I can't complain because IT IS growing back. :) Has anyone changed their haircut or hairstyle due to their hairloss or thinning hair? If so, what haircut did you decide on? I can only think of cutting it short, but not too short. Dont want a boycut. I'm just bored and tired of putting my little ponytail into a itsy bitsy bun. Can't keep it down in a ponytail because its so thin, none of my hair ties can hold it. I need your help! Any suggestions? :?

10-15-2006, 01:21 AM
I am in the same boat...always had thick hair...mine is still past my shoulders but I am very thin on top. I wear a lot of head scargs...because my hair is long it gives the illusion that I have hair. I went to my hair dresser about a month ago ...I have gone to her for 20 plus years....she cried when she washed my hair....her hands were just covered with hair! She just gave me a trim, because she said at least i could cover up the thin spots. But I am tired of it. With the hair longer it seems like so much more laying all over the place. She says it is growing back but that it is falling out a lot faster than it is growing back. I am tired of sweeping up hair. I have three long haired cats and it is bad when there is more "my" hair than cat hair!

10-16-2006, 01:28 PM
I have utmost apologies to make here.....

In the past, especially in my posts, I've been somewhat "flippant" in my remarks about my feelings re: hair loss. Trying to keep up a brave front, saying I would just treat it like "c'est la vie,"...etc... I've used Nioxin but it hasn't helped me much. Lucky to those of you it did!

Well, being in the hospital with all the other problems, I didn't really want to talk (or think about) my hair. After all, we can live without hair, but we can't live without healthy GI tracts, lungs, bones, etc, right?

My hair loss was already getting bad when I got here. With the solumedrol, it has become UNREAL! Great gobs of it on my pillow all the time, all over my clothes, in the bathroom, on the floor...you get the picture. My trendy, spiky cut (which wasn't supposed to have a part) now has a natural 3-inch wide part in it. (see my latest Haiku)
I am freaked, but trying not to act like it, because my HUSBAND is so freaked out by it. I have tried in many ways to "warn" him this day would come, but nothing really prepared him for this. (He was sweeping up the hairs from my bed and pillow last night and crying, "How can you be so brave? I am the one who's supposed to be going bald!")

Question for you all: I do NOT want to go to wigs. I think they are hot, uncomfortable, expensive, and have almost never seen one that didn't look like a wig. I couldn't afford it anyhow.

Should I just go to my hairdresser and have her give me a buzz cut and get it all over with? With my spike cut, the bald places are going to show and look awful anyhow. Plus, it's still falling out, so who knows what will be left?

I have experimented with scarves. Right now all I have is a black one, but when I wrap and tie it, and put makeup on (I have a great bone structure) I see possibilities of looking exotic and kind of pretty. I tried looking up silk scarves on the net....whoooo expensive. Maybe I could go and buy the fabric in the colors of my choice (I'm thinking brilliant hues of turquoise and electric blue and purple and fuscia) and have somebody hem them? And are there any books on interesting ways to do scarves?

I know this is a stupid, trivial subject, but I still want to look beautiful...to my husband and to everybody and TO ME!!!! Thanks for your replies.

10-16-2006, 01:51 PM
Honey I feel your pain! I still have hair but am headed your way fast...it just keeps falling out. I got Nioxin so far not much help....I also have drops for my head....I too am tempted to just get it chopped off. I really feel that my hair has suffered trauma and nothing I will do will stop the traumatized hair from falling out. I guess the fear of just "getting it over with" is...what if it doesnt grow back? It is one thing to feel like sh*%t do I really have to look like sh@#t too? Plus I have the very bad butterfly rash on my face....rough red rash....I don't know if I can deal with a bald head AND a red scaley face too!
I guess I feel like many women...like the less hair i have the less of a woman I am.

10-17-2006, 06:13 AM
Oh, we are still very much WOMEN--just "follicularly challenged" ones....
Think of all the bald MEN we know...they live thier lives just as if they had hair. Think of Dick Cheney---ooo, bad example. :lol:
What I may do is have my stylist give me a buzz cut exept for the little fringe around my face and neckline....that way when I wear a scarf or hat, a *little* hair still shows....
I dunno...sigh...I used to be so vain about my hair.

10-17-2006, 06:15 AM
WHOA!!! I just typed "D*ck Cheney" and it changed it into meat flute. Now THAT is wierd!
It wasn't me! It wasn't me! :oops:

10-17-2006, 08:30 AM
THAT is funny!
As for the hair loss thing....has anyone gotten really really thin....and then had it grow back? I guess if it was Chemo and I KNEW it was temp I wouldnt stress so much about it. I always had to go have my hair "thinned" ...was thick as could be.

10-17-2006, 09:54 AM
Yes my hair thinned out a lot and now it is back to normal, except now it is curly.... And the nioxin really helped it stop falling out... It just takes some time

10-17-2006, 10:39 AM
Thanks Sole...that is good news to hear! I contiue to use the Nioxin...

10-17-2006, 01:36 PM
It would be SOO cool if it comes back curly...mine is straight as a stick and I always wanted curly hair!

Too bad the lupus isn't attacking the hair in my armpits :lol:

10-17-2006, 01:38 PM
Hope mine grow :P s back and I am a tall willowy blond :P

10-18-2006, 01:15 PM
I can't believe I'm not the only one with this issue. My hair loss started about a year after my diagnoses. It had got so bad I went and got a hair transplant. It helped some what But to be honest I am still not happy with the results, I cant wear my hair up or down. I have been wearing it pulled back with a ban-dana. I read a few posting on nioxin. I'm looking forward to trying it. Wish me luck

10-18-2006, 02:01 PM
My hairdresser swears Nioxin cannot work. She states the chemicals cannot penetrate the scalp (otherwise when you dye you hair you wouldnt have roots) to the folicles I think...it cant hurt. I take my meds, use the steriod drops for my scalp, use Nixion and PRAY. You are lucky that you can afford to do the transplants. I would like to have it done on one spot (I had a severe discoid on the back right side of my head near the top) the hair is gone and it will NOT grow back. I happened to see a pic that was taken of me and was surprised at just how noticable it was!

10-19-2006, 10:35 AM
Thanks for the heads up! Everyone on this site is so friendly and willing to help one and other...it's great!

10-19-2006, 12:10 PM
Well I did it...went to see my hairdresser and got it chopped off. It had been down past my shoulders now it is above chin length....She turned me on to Garnier Root lift...a spray you put on your hair to lift your hair, she also gave me a comb...and taught me how to "back comb" I dont mean to sound vain....but damn I look GOOOOOOOOOD! It was totally freeing! 8)

10-22-2006, 12:40 PM
:) That's great! Im excited for you. My hair was also long, thick, and way past my shoulders. Now its, well, whatever's left of it, is still kinda past my shoulders, its so thin, I barely can fit it in a ponytail with a tie. I have lots of patches of new hair growing in everywhere, but its not long enough to comb into my anorexic ponytail. :( I can't ever wear my hair down, unless I'm home, because its very noticeable that Ive lost much of my hair. :cry: I may have to cut it short, chinlength sounds good. So glad you like your new haircut! :D

10-22-2006, 02:35 PM
Trust me it is totally liberating! I feel fresh and hip! Back combing and the garnier root lift make my hair look so much fuller. I was wearing headscarfs every day. And it looks like so much more hair in the drain, sink, floor etc when it was long. I hated the hair everywhere. I had mine undercut....shorter underneath with the longer layers on the lop...it makes my hair look so much fuller...and I enjoy styling my hair again. Before i hate to wash it or comb it and would just throw a scarf on it. Plus the shorter hair that is growing in has a lot less work to play catch up.

10-22-2006, 02:50 PM
Wish you were here to go to the hairdresser with me. I really want to cut my hair, but, Im nervous to go. Ive become so self conscious. :( What will I say if the hairdresser asks how and why my hair got this way. :? Hope I have enough hair to comb back. That's what I do now to cover my thin spots and patches of growing hair. I'm sick and tired of not knowing what to do to my hair each morning. I wash it condition it comb it then what? I can't do much to it now, just pin it up somehow, its getting really boring. Thanks, you've given me the inspiration! :)

10-22-2006, 02:56 PM
I am really lucky...I have had the same hairdresser for over 20 years ...since i was in Jr. High. She always told me I would never have to worry about going bald! I went last month and she just cried because my hair was so thin and fell out when she washed it. Funny thing was she wasnt ready to cut it! I wish I was there to go with you...or that you were here so I could take you to my hairdresser. Bottom line is find someone you trust. Go for a consultation and explain what is going on. Get a teasing comb ...and some root lift....backcombing covers the thin spots better than a scarf every did!

11-30-2006, 12:27 AM
I remember when I was first diagnosed back in Aug. all the docs looked at my hair and told me that it would probably not fall out as usually the worst flare is the sign of the future and since I hadn't had any hairloss that was not apart of my "lupus".....well low and behold! My hair is coming out at 90 miles an hour! There is hair everywhere except on my head. I am using the Nioxin shampoo but find it super drying. My hair feels like a brillo pad after I shampoo then when I condition it then its ok. Is that what everyone else is finding? I have tried 3 different hairloss products and my hair seems to be falling out more. I get goosebumps when I clean the drain. I am taking lots of vitamins and fish oils but to no avail. Is this gonna stop? Is this from the prednisone? Is this from Imuran or Plaquenil? My doc says the prednisone but I am only at 5mg now so shouldn't it slow it down. My labs say that I am getting better. I know this sounds so petty but when you are walking around all blubbery with a moon face and now super thin hair, ya really feel self conscious. I guess this is my test in humility...never judge a book by its cover as you have idea what is happening inside....

11-30-2006, 02:40 AM
I was diagnosed in June....and my hair has continued to fall out...I tried the Nioxin and it did dry my hair out too...and I really dont see that it works. I have been on Paquinil only and my hair still falls out. I have come to the conclussion that my hair has suffered trauma and will fall out...new hair is growing in but not at the same rate. I got a teasing comb and I tease the very thin bald spots to cover it....It will end when it ends and thats all I know.

11-30-2006, 10:13 AM
I don't believe the hairloss is from any of the drugs. I found out I had lupus by going to the dr.BECAUSE my hair was falling out. I was sent to a dermatologist who gave me cortizone shots in my scalp to re-stimulate the hair folicles to grow. My insurance covered it as any other dermatology appt. and after about a month and a half it started working. For a brief moment it started to fall out again but just enough to scare me. It started to grow back again before I had more bald patches.This was 2 1/2 years ago; I still have thin hair but no more bald patches!
If you are still having no luck try going to a dermatologist.
Good luck. Hang in there.

11-30-2006, 12:43 PM
Thanks I see a derm...he is the one that diganosed me (I was mistakenly treated for thyroid for over a year) the derm gave me drops for my scalp which havent worked. I go back to see him 12/11 ...up till now he has blamed everything including my lack of response to Paquinil on the fact that I smoke. I am please to tell him shut up when i see him because by then I will be smoke free for almost two months. :lol:

11-30-2006, 01:32 PM
maybe you should try a new derm if he is not going to look beyond your smoking. I don't smoke but if he isn't willing to think of other methods because of it, get a second opinion. My derm also gave me some topical stuff to use along with the injections-kind of like a mousse-but i never did use it. The shots seemed to be the quickest results from what I have read of others efforts. Good luck and Congradulations on quitting smoking. In the long run you will feel Great!

11-30-2006, 01:37 PM
Well I just switched PCP's and today was my first visit with her...I expressed my frustration...I have another dermatological skin disorder which is NOT lupus related and the derm has been less than helpful on THAT issue as well...but he is supposed to be THE best in my area. So my new doc todaysuggested I go to the derm on the 11th and see if now that I have quit smoking he is "more helpful" if I do not feel better about this visit then I she will find me someone else ....

12-01-2006, 07:43 AM
I love this! "In the depths of winter, I finally learned that there was in me an invincible summer." Thanks!

I think maybe the Prednisone played into my hair loss, but really I think it was just my kidneys going bad. Now that I'm a bit better my hair is not as dull and it did grow back in, though I never had bald patches, only thinned a lot. The Nioxin didn't work for me, but kudos to those of you who have found success. I, too, cut my hair short (though I had done it before and liked it). Shorter hair defninely looks like more hair! I also started highlighting it (at a salon not at home!) because it adds a layer to your hair shaft - it definitely makes my hair seem thicker.

Thank goodness for hairdressers!

12-01-2006, 09:04 AM
I like natural henna because it thickens my hair and makes it look healthier and doesn't irritate my scalp like some of the other products do. Some people with lupus can have bad reactions to the chemicals in permanent hair dyes, so it's probably a good idea to steer clear of them.

12-04-2006, 09:56 AM
That's a good point, Marycain. I do have really sensitive skin, but use Aveda products which are much more natural than others - they have some that are all over color that eventually washes out made only from naturally derived products.

Anyway, I haven't had any problems with them. I've always wanted to try henna, since I'm kind of an organic food lover/naturalist at heart (the hairdying is my exception), but I'm so fair and I've seen it come out really dark or red on a lot of people. At my co-op the hennas look really dark.

12-04-2006, 12:01 PM
If you have your hair done at a salon, they should have neutral henna products - if you want to purchase from a co-op, make sure the product is cassia obovata - it doesn't add color. The red henna is lawsonia inermis, indigofera is "black" henna for darker hair, and you can buy pre-made henna-based products in about 15 different colors if you want to color gray. With any hair color products, natural or not, be sure to do a patch test first on a small patch of skin and wait at least 24 hours to check for reactions. My hair is really dark but has blue/purple undertones because my mom was native american, so it's almost impossible for me to find a hair color that matches, so a friend of mine who's an herbalist makes me an herbal rinse to maintain the color. As you've probably noticed from some of my other posts, I'm very interested in herbs and organic foods, especially herbal medicine, although I definitely use conventional medicine too :)

12-04-2006, 10:12 PM

12-19-2006, 01:27 PM
My hair has been getting messed up, too. It doesn't look bad, it doesn't even look thin. It used to be ridicolously thick but now it's more normal. Everyday, I'm noticing that clumps of hair are coming out as I wash and brush it... bleh :roll: i dont think it'll get bad...


12-25-2006, 06:50 PM
I am now used to being bald...and suprisingly like it sometimes: so...a list of a few POSITIVES with hair loss....

1. LESS TIME in the morning, shampooing and conditioning, and blowdrying and curling, and spraying.....now it's just 5 minutes worth of makeup and I am ready to roll.
2. People who don't want to stare at my head now stare into my EYES when they talk to me...it makes quite a difference!
3. When I wear scarves, people stop to say, "What a beautiful scarf!" and smile. wonderful!
4. I have again, had perfect strangers wish me better health and even say they will pray for me. Again, fantastic. Who DOESN'T need a few more prayers on their behalf?
and finally.....
5. I have discovered, in myself...where BEAUTY really comes from...it's how you behave, how you treat others, and how you feel about yourself. I was (still am) a vain person. I modeled in my twenties. I may never have learned this lesson at this deep level any other way.
It's trying to grow back, but only in patches...so my husband shaves me...GENTLY. I will do this until the patches disappear. Until then, I don't worry about standard conventions of "beauty..." I do know what real beauty IS.

Chin up, everyone! You are gorgeous! Love, Kathy

12-26-2006, 01:16 PM
What an inspiring post Kathy, thank you so much! I've just recently been diagnosed with skin lupus and dealing with hair thinning myself. It's wonderful to read encouraging words.

I've read this thread with great interest and am a bit surprised that no one has mentioned Rogaine. When I first started losing some hair my dermatologist recommended it in order to stimulate hair growth. It seemed to work just fine, hair seemed to be growing, though thinner than before (I too had crazy thick hair). So I stopped Rogaine. Mistake! I went back on it after 2 mos because I started to notice less new growth and now started losing lots more hair. But during my last visit with the doc, he mentioned it could be the Rogaine, stating that it will generate new hair growth but in doing so, will trigger hairloss as new hair starts to grow in place of longer strands.

I also use Ojon products as it leaves my hair very healthy looking. And since I don't have as much of it as I once did, I want what I do have looking shiney and healthy!

Warmest regards,

01-02-2007, 11:49 AM
err....by the way....I only wish I could make my hubby stop making "RRRRRRROWWWWW!"race car sounds when he's going over my scalp with a razor. He has never even nicked me, but dang it's scary.
boys WILL be boys, eh? :roll: I tell "Speed Razor" he needs to chill!