[jrgator8815]

Does anyone else's shower drain look like a Wookie bathed in it? Every morning when I wash my hair I am cleaning out at least a handful of hair. And, the texture of my hair is changing. I don't use styling products, condition everyday, very limited heat (blow dryer) and it's still coming out. I don't have bald patches but it's depressing. I almost fear washing it because of what I'll see in the drain. My doc knows about it and wants to know if it gets worse, and I trust him. But I was curious to know if any of you have any suggestions. Shampoo or conditioners that help?

 

[Goony]

Yes I have the same problem. I have to clean the hair out of the drain every morning, and then after I comb my wet hair I have to clean out the comb and sweep up the floor of tons of hair, then after I dry it I have to sweep up the floor again of even more tons of hair. It's amazing that I'm not bald. I don't even shampoo my hair everyday, just a few times a week and condition in between and don't use any hair products and often just let it air dry.

 

[jrgator8815]

I've been doing the same thing after brushing and drying. You'd swear we had a golden retriever in the house shedding. I don't want to sound self-centered but my hair has been the one constant thing that has always looked good. My weight has been up and down, I went through acne as a teen, teeth aren't gleeming white, well...I'm no beauty queen, but my hair was always gorgeous. Pin-straight, stawberry blonde, and healthy. Shine and softness that even my kids picked up on. I can deal with aches and pains, but this is actually making me cry...on the inside at least.

 

[Scorpio Princess]

This has been happening to me too - awful isn't it

I used to have such thick, shiny hair but now it's just limp and dull. In fact, I used to wish it wasn't so voluminous - oh to have it like that again...

I've not got any specific bald patches (although I have had them in the past) - it's more of an all-over thinning. I've always lost a certain amount of hair when washing and brushing, but not like this. I also used to have a lot of 'new hair' - little 'fuzzies' along my parting and above my forehead/nape of neck - but that's dimished too. I just feel like a big old mess to be honest As if having spots, dry flakey skin and puffy eyelids wasn't bad enough!

 

[lazylegs]

Many of us have been in the same circumstance. There is hope though. Once the disease is more in control the hair loss will lessen.

There have been several past threads on the same issue. Search through the "Looking Good, Feeling Better" forum and you will find some things that have worked for others.

Take care,
Lazylegs

 

[pollianna]

yeah mine took forever to calm down, about 5 yrs. I use Nioxin and also Nourkin shampoos and conditioners. I find they help with the texture and look of the hair....They seem expensive but are worth investing in

 

[pollianna]

memory's no good tho :lol:

meant to add, recently mine has almost not fallen out at all , 5 months on Plaq and in a bad flare

 

[KarolH]

My hair is cut very short and was always a nice, full head of hair.....not any more. I do not have gobs of hair in my shower drain as I do not have gobs of hair on my head.:lol::lol::lol:

My hair loss has slowed some but honestly, even on Plaquenil I am still loosing hair. Even my eyebrows are not normal any longer and I do not have as many eye lashes either. Thank God for Mascara!!!

I know your frustrated but given time it should slow down some. Try to limit your blow dryer and styling products and use a good shampoo for thinning hair.

Hope to get to know you better.:wink2::wink2::wink2:

 

[Lorelei]

Same story here, In the diagnosis process, but went through a bad period once before and lost gobs of hair while this time it is much worse. I also hate to brush, shower and even cringe when someone touches my hair b/c I know so much is going to come out! I wash about two to three times weekly depending on activity. It comes out in the shower, then when I comb it out, then....when I blow dry----all over the floor and again after I use the brush curling iron. I am very gentle, but it won't stop. I am hoping to get some answers soon so I can halt it. I am taking a supplement of Biotin which is a b vitamin that is great for hair, skin and nails. I don't know how helpful it will be as long as the cause of the hair loss remains untreated. Hang in there, there was an end to the first period of hair loss and I am looking for the end of this cycle!
Lorelei

 

[debatat]

Hi, my hair loss was horrendous before diagnosis. I had nearly bald patches on the sides of my head and almost no eyelashes. My first steroid injection and my eyelashes grew back!!! I have had my hair cut short to cope with the hair loss and regular cuts help minimise the hair loss. I am on plaquenil and steroids and the hair loss is minimal except in a flare. I know it is difficult, but when you are on treatment it won't be as much of a problem. Hang on in there!!!

Deb

 

[Hatty]

Can I ask what you mean about the texture of your hair? I have incredibly bushy dark curly hair (hmm.. realise I'm sounding like a bison here) so you can't see thinness (yet!), but I do seem to be shedding a lot around the house (sound like a dog now) and plughole/brush/comb are chock-a-block. However, it also seems to be much sort of rougher and matter than it used to be, however many products I pile on it. I haven't had a shine for months. It hadn't occurred to me that it might be lupus related, but have had disease activity recently... is it likely do you think?

xHatty

 

[jrgator8815]

Wow. Sounds like we're all in the same boat. I agree, I only wash now 2-3 times a week, never wear a ponytail, no styling products at all, and blow dry on low heat and low setting. And it falls like rain. I got out of the shower yesterday and there was maybe 30-50 strands in the drain. I was so excited I scooped it up and ran it out to my husband. Gross, but it was a good "hair day."
As far as texure goes my hair was always soft, had a great shine, and never felt dry. Now it's dull, starting to frizz a little, and I can see it getting dry. I won't even talk about eye brows or lashes. My lashes are bleach blonde anyway so I live and die with mascara already. But, my eye brows have been missing since I was in middle school. Propane grill accident burned them off and they just never grew back in right. So I use a brow pencil to fill them in.

 

[Maz0252]

Hiya, I lose hair like anything. Hubby is always dehairing me!!! Our drains are terrible as I've lost so much and am now losing eyelashes. Luckily I've always had really thick hair so it's not noticeable...yet!

I'm just praying that when the disease gets under control so does my hair loss, either that or I am going to have one of the wackiest collection of wigs in Norfolk - always fancied purple hair but never had the guts to dye it...........................................

 

[Scorpio Princess]

I'm so glad others have mentioned eyelashes. Just the other day I really scrutinised my face in the mirror because my eyes haven't looked 'right' for a while, and now i've worked out why - I have about half the number of eyelashes I used to! I'm dark haired so never used to bother much with mascara, but now that along with eyeliner is the only thing that's making my eyes look even a little bit like they used to

I did get a little bit excited earlier though, when I spotted some 'new hair' at one of my temples - just started sprouting through. Let's hope it continues!

 

[jrgator8815]

ok, maybe i'm just in a bad mood today and i hope this doesn't offend anyone, but i saw a commercial last night for probably the most rediculous medical "breakthrough" i've ever seen. it was for a product called Latesse...i think i spelled it right. it is something that actually makes your eye lashes grow longer, fuller, thicker, etc. while this product could help many who have lost their eye lashes from disease like cancer, lupus, and the sort the way they advertised it infuriated me. models, and glamorous party scences, using the product for vanity. there are people out there suffering from devastating illness that there is no cure for and they have found a "cure" for thin eye lashes. i don't wake up every morning worrying about my eye lashes..thining or not. i worry that i may not be able to walk, or pick up my kids. i worry that my son will have uncontrolable nosebleeds because there is no cure for his bleeding disorder. Where are the cures for this kind of stuff?
told you i was in a bad mood...sorry.

 

[Coastiewife]

I totally agree!!!

I saw that commercial and thought the same thing. who fronted the money for that research I wanna know????

 

[leannelee]

hair loss after 10 years of lupus

I have had SLE for 10 years now I am now 29 and just started having a lot of hair loss recently. I had always had very thick coarse hair. I did have a baby by c-section 6 mos ago. So expected lupus to flare afterwards. But it is still hard because I have been thru so much with lupus. I would like to have my hair but lupus is like the devil I have to keep fighting him.
So I guess I will go buy me some head scarves and a wig and handle losing my hair with grace and as little whining as possible.:worried:

Anyways, It is especially hard to deal with all the physical changes lupus causes to your body. I pray everyday that god renews my spirit and helps me keep a positive outlook on life. Reguardless of all our pain, hair loss, swelling, rashes, fatigue, shingles, kidney failure etc.... I believe we all can get thru this and be made stronger thru our suffering.

 

[Lily]

Hi leannelee,

Sorry to hear about your increased hairloss ((((((hugs))))))). Often when this happens it is a sign of increased disease activity and the disease not being under control. What meds are you taking at the moment?

It's also an idea to get your thyroid checked out, that's another commonly overlooked problem that even lupies are not immune to. It's sometimes missed because the hairloss is blamed on the Lupus. Important to test.

I agree that we will all get through this, but as far as being made stronger by it, that's something that I could do without :wink2: I wouldn't wish it upon anyone!!

love
Lily

 

[leannelee]

I am currently suppressing my immune system on predisone, cellcept, and plaquenil. But still not doing the job so called my doctor yesterday to talk about recent hair loss she said will up the predisone dosage and try to get me in some kind of study. Over the 10 year period I have been fighting lupus, I have tried all the medicines approved by fda. My doctor thinks the study drug lymphostat b will be the miracle drug for lupus. Although the blyss study I was in which drug was lymphostat b help tremendously in lessoning my flares.But right now Nothing seems to suppress my immune system enough to control the lupus and stop my hair from falling out. Lupus is hard to deal with but there is no cure. I just try to stay positive and as strong as possible and keep fighting lupus.

I have noticed my hair loss is all over but the sides of my head are getting thinner than rest can see more of my scalp in these areas. Has this been the case with everyone else.

 

[Lily]

I do hope that they can get you sorted and some of the newer drugs are more helpful to you.

I don't lose a great deal of hair but what I do is definitely around the hairline worse than other places, seems to be common.

love
Lily