Hey everyone, I'm new here so bear with me! I was diagnosed last summer with DLE only (I was -ANA). I just started loosing my hair several months ago. Thank the lord I was blessed with a TON of hair so its not easily seen at this point. I was placed on plaquenil this week, fingers crossed that it starts working soon. Can someone please tell me about the Nioxin shampoo and their experience with it? I'm desperate to make this STOP. Thanks in advance!
Welcome, Treacy! I am experiencing a lot of hair loss as well and am looking for a solution. I had a ton of hair cut off hoping it would help. It seems to have, but I am concerned it will start up again as it continues to grow again. I will be monitoring this post to see if anyone has feedback on the shampoo you are asking about. I have never heard of it.
In oct 2012 I was told I have SLE and my hair loss has been insane. I had long thick hair and now it is VERY thin and brittle. I lost almost all of my hair. Not sure if it was from a flare or the meds. I can tell you its growing back and I havent lost much in the past week. I am crossing my fingers. I have not tried any shampoos etc because my doctor said it will grow back on its own. I did cut my hair when this first started and I think that has helped.
I do not have a solid lupus dx yet. However, I have lost a lot of hair. Its brittle and thin. I have had brittle hair a long time, but not hair loss/thinning. I have heard that the herb nettle is used in shampoos to make hair grow. Also, I heard chamomile tea and licorice root tea can be added to the shampoo. I am going to brew up some of the teas and add it to my shampoo to see.
I have not had dramatic hair loss, though it is much thinner than when I was younger. My hairdresser recommended Nioxin and I have been using it for a year. There are formulation for different types of hair including normal to thinning and visibly thinning. it is expensive but last forever on med. length hair.
My hair is much healthier now and has some shine to it. It feels thicker than it was and I am often complimented on how healthy my hair looks.
All I can say id give it a try and see if it works for you. I get mine in a beauty supply store in London, Ontario. I'm not sure that it is carried by many salons and it may take a while to find it. It also comes in several sizes so you can try it without spending a fortune.
Good luck.
I had really long, thick hair and for several years it was falling out, not at a normal rate, I decided to cut it short, it seemed to help for awhile,then it started happening again,now my hair is much thinner than it has ever been.I do not have a dx yet, but do have a lot of symptoms.
Nioxin helps it appear to look thicker. i would say for everyone, try to stick with sulfate free shampoo and conditioner. it seems to help you average person with hair loss. so it cant hurt for us.and you can find inexpensive sulfate free in walmart or target.
Ann A. said:
Dear Treacy,
I have no experience with the Nioxin shampoo. But I wish you the best of luck in keeping in your hair. I swim often and therefore keep mine very short - at least that is what I have been telling people for 40 years. I have tried many things to help my nails be stronger but so far nothing has worked. I hope you have better luck.
Good Luck
Hi Treacy. Even before my tests came out positive for lupus, i’ve been losing my hair like crazy. When i started taking meds like plaquenil and prednisone, it got worse. I almost lost all my hair. But it started growing back little by little. Now, though my hair still looks thin, i don’t look as bald as i would describe it. Not one shampoo helped control the fall. Don’t get me wrong. I’m not discouraging you to use shampoos you think would help. I’m just saying that losing hair is part of it. Sad, but true. But don’t worry. It will grow back. We just have to be patient.
At first when I began losing my hair, it was traumatic. I've finally cut it so that it is not as obvious. Your hairdresser can help you with a style. I was told this is one of the "normal" things we can expect. I must say, I am dealing with it better. And if it ever gets really thin there are many cute wigs available. Mine seems to come and go. It looks better at times and embarrassing at other times.
I've tried some of the thickening shampoos that seem to help for a while...then...I am thinner than ever. Please let us know how it works for you.
Hi all,
My hair is thinning, I keep it short, however, I can see my scalp at times. I used to have pretty thick hair and I thought that it was the plaquinil making it thinner. I am now trying some hair thickening products by Pantene. I saw them advertised in a magazine and I'm pretty happy with them so far. I am also taking Biotin, but it really does not seem to help. Hopefully, you can find something that works for you.
Jeannine
I started losing my hair at a rapped rate this year as I was having a bad flair. I’ve had Lupus for over 15 years and this ifs the first time I’ve experienced this side effect of Lupus. I started taking prenatal vitamins and everything I was losing was growing back at a faster rate. I have to wear my hair up in but manage to style it in a fashionable way. You can always buy hair extension to make it look longer. Stay strong I know losing my hair was devastating to me was I felt that was one thing I loved and made me feel a little normal.
Thank you everyone for the info! I spoke with my hairdresser today and we are going to try some extensions (since its just in the back underneath everything) and I am going to try the Nioxin. She said it works well. It wont make the hair grow back but will thicken everything that you have. I think the plaquenil has started to help at least on my hands, but it could be the new steroid spray. Either way, a good attitude always helps things heal as well.
Does anyone just have DLE? Or are most folks SLE. That has been hard because there isn't as much info on ONLY DLE.
Hi Treacy,
I have never heard of Nioxin, but my hair has been falling out off and on since I was 12, and what always brings mine back is a conditioner called "Mane 'n Tail". They carry it in most stores. It was made for show horses, to fill in any thinning part of their coat or mane. Then people found how well it worked in people. There's also shampoo but I haven't used that. I use about a nickel sized dab and massage it into my scalp, not the hair, then sleep with it on, then wash it out in the morning. I only did this 2-3 times a week and it still made my hair grow back in. The Dr. said my scalp was probably so scarred that I wouldn't get my hair back, but I did, thank heaven. I would get big bald patches and now it's thinning all over and I still stand by Mane 'n Tail.
Hi good luck with the plaquenal. Nioxin shampoo is the best hairloss product out there i am also a sle patient as well as a nationwide hairdresser
Hi I don't know the difference between DLE and SLE like i have but I started on plaquenil 6 weeks ago and my hair is growing. I don't know anything about shampoo but I doubt it will work.
Does anyone know the difference between DLE and SLE freightliner
DLE is discoid (skin) lupus. SLE is systemic lupus, (Internal) all of the body's systems.
Hi Treacy,I use to have big hair like 80s hair,my hair is now about 3 inchs long and spiked..I had a hard time with the whole hair thing and so did my husband and son..My daughters have been so sweet about it..My hair dresser got me the bosley hair care,I tried nioxin and didnt seem to notice a difference in my hair,she also told me to take this dietary supplement called "biotin" 1000mg a day,great for hair ,skin and nails..ITS working..good luck celeste
Thanks for the definition of DLE SLE I have SLE diagnosed 4 months ago. I had 2 quarters sized patches of hair loss on top of my head. I'm on plaquenil and it has helped my hair loss but more important its helped the sores in my mouth. they were awful I also have lichen planus which is a skin disease but maybe i have DLE. I unfortunately know SLE is worse. I have no stress in my life i'm 72 have a great husband and great kids.
Hello Treacy,
I have DLE and also loads of thick hair at one stage where i could sit on it...a chunk came out so i cut it short to find bald patches, i've growed it back shoulder length 3 times and it starts re-occuring besides the usual hairloss so now it's kept short and the hairloss slows down more i've noticed.
I can help with the shampoo as i use elvive and best of luck with the plaquenil as i take it also and before you started it have your eyes been tested with an opthamologist first to pass you to use the drug.
Terri :)