View Full Version : Lupus and Hair Loss

10-29-2006, 05:21 AM
I seem to be losing hair -- not quite chunks, but significantly higher volume whenever I brush or wash it. I'm confused as to whether this is due to the Lupus and what role Plaquenil plays in it. What I've read online seems inconsistent.

Is this a temporary thing, or can I expect it to be an ongoing problem?

How many people have found the vitamin products useful? How long did it take to see a difference?

How do Nioxin shampoo products help and what products among the many in their suite have those recommending them found most helpful? How long did it take to see a difference?

10-29-2006, 06:15 AM
I'm on Plaquenil and have the same thing going on. I'm losing gobs of hair when I wash it.

10-29-2006, 07:13 AM
For many people the hair loss seems to be related to disease activity - for others it's a constant problem. Hair loss is a side effect of many medications often prescribed for lupus patients, including plaquenil, blood thinners, anti-depressants, birth control pills and blood pressure medicines. Hair loss can also be caused by thyroid problems or hormonal imbalances, so it's important to talk to your doctor, to make sure your hair loss isn't caused by something other than lupus. I think many of us tend to blame lupus for all our symptoms and sometimes forget other thingsa can go wrong too.

You shouldn't use rogaine or similar products without checking with your doctor first - they may contain ingredients that interact with your meds, and these products can also irritate your scalp. A good quality shampoo that contains amino acids can help strengthen your hair - your hair stylist can help you pick one right for your hair type. You should also stay away from hot oil treatments and permanents that inflame hair follicles, and anything that stresses your hair - hot blow ryers, curling irons and hot rollers, and wearing your hair in a ponytail or braids can all increase hair breakage and loss. Wearing a hat to protect your hair and scalp outdoors is also important.

I have lost almost all my hair several different times and it has always grown back. Discoid lupus affecting the scalp can cause permanent hair loss in affected areas, but most lupus-related hair loss usually isn't permanent.

10-29-2006, 02:45 PM
Hi I have that too, it seems for me to come and go there will be a few weeks where my hair will be falling otu more than usual and then it will stop and seem to grow and get quite thick.

I haven't been on plenquenil but I think i've heard that it coudl cause that. When I was put on predisone I had some pretty good hair loss happening and I had to chop off my hair pretty short.

I would mention it to your doc so that he can rule out other possible problems like your thyroid.

I became pretty fond of scarves, they are great and fashionble

take care

12-06-2006, 07:42 AM
Well, I have been experiencing a little hair loss for about 5-6 days now. I don't really know how to react. I have been so emotional and moody. I finally broke down and told my fiancee last night because he could not understand why I was acting this way.
It is just so embarrassing and scary and makes me feel like less of a woman. I also don't want people to look at me like I have a disease. Luckily, I have really thick hair, so you can't even really tell. But I am still kinda scared. I am thinking of getting back on anti depressants because I am getting so emotional and have been snapping at Travis soo much.
He is being great about everything, and says that he is gonna be here for me through everything.

Miss Sunshine
12-06-2006, 11:38 AM
I lost all my hair in 2 weeks, this time last year actually. Started out as alopecia totalis, which is all the hair on your scalp.
And now I have alopecia universalis, so no hair anywhere, no eyebrows, no eye lashes...you get the picture.
I was put on Plaquenil to help the hair grow back, helped a bit, the patches grow and fall out again.
Yep, it's pretty hard in this society to loose all your hair at 26. I was engaged, but we broke up soon after, actually, on Valentine's Day, after 5 years. You think you know someone, go figure, hair is all that important.
Yeah, loosing your hair when you don't have a real reason, I always feel like if I was going through chemo it would at least seem purposeful, if that makes sence.
NIOXIN is what I use on my scalp, I leave the conditioner on as long as possible, a good 15mins. I love the tingly feeling, gives me hope that it will inspire new growth one day...

12-06-2006, 12:04 PM
Wow. My grandma is like that, no hair anywhere. I am hoping that I don't end of like that at 22! I guess I will deal with it if i do.
I kind of feel the same way. BF says he will be with me forever, but what will happen if I really do lose all my hair?? I guess I've proven to be tough and will pull through it either way.

12-06-2006, 12:16 PM
I have heard that Anthralin, a psoriasis treatment, has been used by some dermatologists to regrow hair in complete alopecia where it is auto-immune and not genetic. Has your doctor ever mentioned this as a possibility?

Miss Sunshine
12-06-2006, 02:45 PM
Yep, I tried all doses of Anthralin, which is a compund that is mixed into a cream you apply at night. It irratates the scalp, itches like crazy and burns after months of usage. I had the steroid injection into the scalp as well. I've pretty much tried it all, the vitamins, the natural hair growth "potions", the have been for sessions of scalp massages.
So, it gets to a point where you put on your wig , draw in some eyebrows and I can put on fake lashes in 3 secs (no kidding)and move on...

12-06-2006, 03:02 PM
Have you ever had the genetic testing to see if you have the gene for alopecia universalis? I'm not sure how expensive the testing is, but apparently doctors have isolated one particular gene which many people with AU share. If you do have the gene, it might explain why none of the treatments seem to work for you.

12-09-2006, 12:11 AM
I am going through the motion right now of losing a considerable amount of hair. It started about two months ago and I started to use a VICHY woman's hairloss product that really made my hair nice but didn't stop the loss, Nioxin which made my hair feel like a rat's nest after washing, and now I am using just a good quality shampoo. MY drain is heaving from the amount of hair clogging it, my garbage can is full of hair after I comb it, the floor is full of hair after a super quick blow dry and my clothes are continuously covered. I am being encouraged to cut my hair short but my husband says I will look worse (thanks)...It is sooooo thin especially at the back and sides. I am taking Plaquenil as well as Imuran with prednisone so those are my culprits. Hello depression......I hope that one day it will grow back Auburn and wavy....LOL since I am nearly all gray if I didn't colour it!.

12-09-2006, 09:06 AM
I don't know about the auburn but you've definitely got a chance at the curly - my "new" hair is so curly it's comical - especially because I've always had long straight hair. But, hey, it's hair! You might ask whoever does your hair about a neutral henna treatment to thicken it some and strengthen the hair shaft. A lot of lupus patients have trouble with the dyes used in some hair-coloring products, so you need to be careful about that.

12-09-2006, 09:56 AM
Once again MARYCAIN, I always appreciate your responses. I would love curly hair! My hair used to be auburn but as I am so grey now, I have gone lighter but now paranoid about colour and highlights due to the loss factor. Henna is the big thing here but you must do it a lot if you have grey and many Western hairdresser have told me that too much henna clogs your hairshafts and causes hairloss and you would be surprised how many women here are balding due to extreme henna use. 80 year old women are walking around with pitch black hair. Sort of abnormal in Western society...I cannot handle the dark colour of henna as I am so white (and red skinned due to extreme sensitivity) and look like Medusa with dark hair. So do I go grey and bare it for a while or do I colour it and watch it thin out? Right now it does nothing for me and looks so dull. I guess I will just grin and bear it!

12-09-2006, 11:12 AM
Actually what I use is a neutral product that doesn't add any color at all, and I only use it about every 4 months or so, so I haven't noticed any damage, but will certainly keep an eye out! Thanks for the warning! I guess from an herbal standpoint what I'm using is actually "senna" (cassia obovata) rather than "henna" - true "henna" is red (lawsonia inermis) - but most stylists refer to all these products as henna. Same botanical family but different herbs. So the "senna" doesn't cover gray or affect your color, just the texture of your hair. My hair was very glossy and shiny pre-lupus - it grew back curly and frizzy and with no shine at all, and this smooths the texture and gives it a nice shine.

The pitch black hair color you're referring to in many of the Saudi Arabian women is what's called "black henna" but the herb involved is indigofera tinctoria, which literally stains the hair black. I've seen it used a lot for tattooing in other parts of the Middle East and Asia, but not so much on hair. It would definitely look strange on someone with red or blonde hair.

You can buy just the herb cassia obovata in many health food stores because it has other medicinal uses, and just mix it into a paste with warm water and use it as a conditioning pack. Just make sure it is actually this herb and not one of the others, and it shouldn't affect the color at all. Cassia obovata smells like fresh cut grasss - that's how you can tell it's the pure herb. :)

Some natural things you can do to improve your hair's health and shine -

olive oil is a great conditioner - you can massage it into damp hair and leave it for about an hour before shampooing your hair. You can also buy shampoos and conditioners that are olive oil based -Olivella has a great line of hair and skin care products.

Catnip, sage and rosemary are available in most health food stores and in the dried spice section of groceries, or in teabags. Any of them are good for your hair or you can use a mixture of all of them. Rosemary may also help your hair grow. Brew a very strong tea with the dried herbs or teabags aand let it steep for at least 30 minutes. You can use it as a rinse after shampooing, or as a pre-treatment before shampooing. If you use the sage consistently, it helps cover the gray and restore your natural color. If you were a natural redhead, using a rinse of brewed rosehip tea will help restore the red and make your hair shiny - brunettes can use this to bring out red highlights.

Hope this gives you some ideas!

12-10-2006, 07:45 PM
Great idea on the neutral henna.....My hair is very dull and thin now so I will try. I have also tried a new Aveda product called Pure Abundance (shampoo and conditioner) It works well to make hair appear thicker. But it does dry the hair out a bit so I don't use it everyday....and its pricey stuff.
A word about hair dyes. I have been wanting to highlight my hair because I guess I would like a little pick me up. Do you know what the concerns with lupus patients are? I have read alot of conflicting stuff.
Tanyaw - I am sure things will get better. My hair is not great now but better than it was a couple of years ago so its good to know that it can improve.
Biotin and evening primrose oil are both supplements that I use to help skin and hair and I do notice a difference when I don't take them. Happy week to everyone!

12-10-2006, 08:34 PM
Mine is still falling out in places, trying to come in in others. It's very fine and pale and soft where the new hair is; the "old hair" is quite dark and thick, but as it's falling out more and more, I have reconciled myself to the fact that, sooner or later, it'll all be gone. I have posted this before I think, but my husband is shaving my head once a week until all the "old" stuff is gone. Then we'll leave it alone to grow and thicken (hopefully).It probably sounds silly to do this, but I can't stand the "old" dark patches...makes my head look dirty. I'd rather be pink and clean all over my head than have it look dirty in patches!
I've been told my my doc NOT to try Nioxin or any other "scalp" treatments...he's very anti chemical. I guess this means no more dying my hair red anymore (sniffle). But I'd rather be healthy than have a headful of red hair and be sick as a dog.
Right now I have a love/hate relationship with my baldness. Some days when I have my makeup on I feel really ok about it. People tell me I have a gorgeous face and ladies, if there's ever a time to accept a compliment, THIS IS IT! The bald look is kind of cool with great earrings, funky, trendy clothes. It's a lot harder to pull off with more traditional styles, and those are the days I reach for scarves. (I have been given a few, and I've made several out of old clothing, and silk I bought at a fabric shop.) I *may* decide to invest in a good wig in a few months...right now, I just can't justify the expense.
Wouldn't it be cool if some celebrity decided that bald was cool and all of a sudden we started seeing Paris and Milan models strutting down the runway bald? :D

12-10-2006, 08:35 PM
There was a "study" done in 2005 that reported that using hair dyes and lipstick increased a women's chances of developing lupus by about 40% - it raised a lot of eyebrows and a lot of concern. But when you actually look at the study, it was done by recruiting women to fill out a questionnaire over the internet, and the incidence of "lupus" was strictly self-reported - none of it was based on actual patients diagnosed with lupus in a controlled study. And none of the actual clinical studies have shown a correlation between using dyes and developing lupus. That being said, many of the commercially available hair dyes contain ingredients you might not really want on your head including petroleum, coal-tar derivatives, lead acetate, and oxidating chemicals such as ammonia. These can be very irritating to your scalp, and women with lupus can be more prone to allergic reactions. And if you have any lesions or inflammed areas on your scalp, you should check with your doctor before using anything. There has been some concern that the coal-tar based dyes increase the risk of cancer, but the studies are conflicting. As a general rule, "permanent" hair dyes contain the harshest chemicals and probably pose the biggest health risk.

Henna and other plant based products come in a variety of shades and can be used to color gray or darken hair, but not to lighten it. Anytime you are using a dye, whether plant or petroleum based, you should always do a patch test on a small area of skin first, and wait to see if you have an allergic reaction before using it on your scalp. Plant based dyes will generally not last as long, and you may not get the same intensity or variety of colors, so it may be harder to match your existing color if you're just trying to color gray. You can also try "kitchen color" by using products like sage and rosemary.

As far as salon products, Aveda are probably the safest to use, because they use mostly plant extracts and no petroleum solvents. There may be other salon products that don't use petrochemicals, but Aveda is the only one in my area that I know doesn't use them.

Hope this helps!

12-11-2006, 10:01 AM
I use the Aveda Pure Abundance hairspray - and I swear it makes my hair bigger. I also use Aveda hair color and have not had any problems.

I like Avalon Organics hair and skin products, too and they follow EU chemical standards (no parabens, grapeseed oil, etc.).

12-14-2006, 12:04 AM
I finally did it and got all my hair cut off. I was so disgusted with the huge (and I mean huge) amount of hair that I pulled from my drain last week. I was scared to look at it as it looked like a dead animal. My pillow in the morning was no comfort or my comb after washing. NIOXIN ruined the texture of my hair so it was totally dried out so i had to do something. Now when I blow dry I can really see how thin my hair has gotten around the sides and back as well as around my forehead. I had to colour it as I am so grey and only 36, so some things need to be done... I wish that we had an AVEDA salon in this country but no such luck. I am now using Kerastase by L'oreal ampoules for hairloss which are super expensive and I am struggling with that but I will just have to cut corners in other places. My husband has yet to see my ahir and he will hate it but I did it for my moral, not his. My advice is do natural things like MARYCAIN suggests and supplements are what I am relying on to make my hair come in nicer and thicker than before!

12-22-2006, 06:05 PM
I'm 27, have had lupus since I was 14. My hair started coming out when I was a sophomore in high school (15-16yrs old). It was devastating - especially since you are judged so much by how you look in high school. It lasted for about a year - it was so thin. It started to grow back in the beginning of my junior year, so I got it cut short so it could all grow back evenly. It was growing back much different than it used to be though. I had ringlets. Today my hair is long and curly/wavy. It took me going through so much emotional trauma in high school to get hair that is gorgeous! (weird)
When it was falling out - I tried everything...and as much as products say they make your hair thicker - they don't. Maybe there are new products out now, but as much as I'd like to think they were making my hair thicker, or look thicker - they weren't. Just stay strong and fight through!!

01-09-2007, 07:48 AM
Well, if it doesn't work out with me substitute teaching, I can always apply for a job as a crash test dummy (joking)