16 replies to this topic

[aniwallar]

Well, I guess I'm goign bald..... Not only do I have ugly hands now and my mouth is getting smaller, not to mention what my skin looks like... but now I'm going to have to do a Britney Spears if this doesn't stop soon.
When I go to my doctor, he usually checks my hair but I don't know if hair loss is one of the symtoms of SS.
I have seen a lot of hair on the bath floor after I take a shower, but yesterday my hair was falling by chuncks.
Anyone going thru the same thing. Also, what is the name of this condition?

Ani

[barefut]

Hi Ani,

I have hair loss too. Mine is generalized thinning, not patches. It was one of my very first symptoms of autoimmune "stuff" almost 9 years ago.

I went to a dermatologist thinking I had developed an allergy to my shampoo or something. He asked me if I was nursing my 6 month old and I said yes. He said probably just a vitamin K deficiency and sent me on my way.

Since then I have had "episodes" or "flares" of hairloss where I will shed like crazy and then it slows down and normalizes. I'll even get regrowth.

BUT it is kinda scary I know. At first I didn't know if it was ever going to stop or if it would grow back. I would get literally a handfull out of my brush every day and I don't have much hair to begin with!

My bangs are really thin and you can see my scalp peeking through. It's not too bad, I'm sure only I notice my scalp staring at me. No one has called me baldy yet anyway!

Hairloss IS listed as a symptom of sclero. but I have not run across many others who have complained about it besides me.

Alopecia ("Allow pee shee uh") is a form of hairloss that is autoimmune. A friend of mine with MS also has Alopecia Areata, ("Air ee ah tah") total body hairloss.

More info online at the National Alopecia Areata Foundation.

As if the seriousness of this illness isn't enough, it isn't fair that we also have to deal with the changes to our physical appearance too.

I deal best with a dose of humor, otherwise I'd go nuts. Some people would say I've already gone there!

Hang in there,
Love,
Barefut

[Jordan's Mommy]

My daughter's hair thinned out considerably about a year after starting Plaquenil. Neither her doctors nor my friends noticed, but since I wash and brush her hair every day, I noticed. We cut off about 11 inches of her hair in June for Locks of Love, and since then, her hair seems to be much thicker on top than before. I think hair loss is a side effect of Plaquenil, though.

Jennifer

[epasen]

My hair is falling out too. I've always had thick long hair, but for about a year now, I notice a lot of hair on the bathroomfloor after shower too, in my hairbrush after brushing, on my clothes etc. That scares me. I haven't been worried before cause my hair has stayed thick, but few days ago I noticed that there's much less hair than ever before. I don't know what to do.

I hope that we can still keep our hair, because being bald would really get my selfesteem LOW.


Emmi

[Katherine]

I too have had that problem. My hair was very long & thick. It was a generalized loss , so it took me awhile to notice that wow, my brush & comb sure have a lot more hair on them these days. So , I cut it all off , and since then , I haven't noticed as much loss. In my case , I wonder if the sheer weight of it could have been a problem. Never thought I'd go so short but you know as it has turned out I wonder why I waited so long. My daughter has MS and she had this problem also, hers was due to a med she was on.

Short , not bald .
Doesn't blow into my face,
using less shampoo, (saving money for my drugs) LOL
And if need be , they do have some really cute hats out there now .
And wigs , LOL a different syle and color everyday.

Katherinne

[Katherine]

By the way, aniwallar,

are you having success with your efforts to quit smoking. Hope so !!!!

Katherine

[debonair susie]

Hi Ani and All,
I experience this a while before I was diagnosed (late '90s). I was terrified my hair would never grow back. I had thick, hair well below my waist and I lost 2/3 of it. So, like Katherine, I got my hiar cut to chin-length, which I think may have been a good thing, as it grew back in. Of course, the aging process has thinned mine out in the meantime.

Something else I'd like to share, since we're on the hair subject.
Hubby and I moved in to caregive my mother, who is legally blind, on O2 24/7 and has other health issues, including onset Alzheimers. Anyway, she had taken a shower (something that's quite an accomplishment, as she, for whatever reason, feels her "once-a-month showers"... if that often... are enough for her... sorry, that's another matter entirely). Back to the story... she had taken a shower and her hair was a very shiny, pretty silver, for which I said, "Grandma, your hair sure is a pretty color"! She replied, "Thank you... yours isn't at all shiny like it used to be"! Bam! "Thanks, I guess"!, I answered.
My comment... she isn't wrong, though. It doesn't seem to matter what I use to wash my hair, the shine is gone... I WILL say, however, that I do have highlights... greys, mixed with three-toned browns

Really though.. should I be using vinegar to shine it up... or what?
Thanks for any input you may have!
Hugs, Susie

[peanut]

My hair is thinning too but it's from the cytoxan. I use an expensive brand name shampoo that helps with thinning hair. Vitamins help too. I don't mind the thinning because my hair is super super thick.

peanut

[Patty]

Hi Ani and everyone,

I also had hair loss a few years back. It was right at the start of me getting ill. I still have some but not too much. I also had thick hair but now its thinner but hey nothing I can do.

Susie..... for the shine, they now sell hair shine spray in most stores. I have two bottles of it because I too lost my shine. I just spray it on after my hair is dry was washing and it looks great. I know Vee is a Hair stylest so hopefully she will jump in this thread and give us some ideas for all this.

[Shelli]

Hi~

I've been noticing the same thing. I turned 40 this year and thought it was more age related. I never made the connection. I use to have very thick hair as a child and now it's very thin compared to how it use to be. Everytime I was my hair to get a wad that I have to thow away than then there's even more when I brush it. There is hair all over my floor. I like many of you, just recently cut my hair shoulder length. I like it, just wish it was thicker, fuller and had shine.

[Piper]

Hi Ani & all, I have been going through hair loss off and on for awhile now too. I also wondered if it was related to this illness as I don't think I'm on any meds that could cause it. I know that hairloss is a symptom of lupus also.
Another miserable symptom.
Hugs, Piper

[aniwallar]

Well, I guess I'm going to have to cut my hair. It has taken me so long to get it to a lengh that I like and now this.
I had never have thick hair, I know I am very vain when it comes to this kind of things, but I really don't want to loose my hair. I'm going to go to the doctor and find out if there is a product that will help me with this.

As to my smoking, just couldn't quit for now. The pills really messes me up. I'm going to start again next week and see what happens. I will keep you posted.

Have a great day,
Ani

[Peggy]

I am experiencing the same thing but am attributing it to the cytoxan I'm on. I haven't had it going in clumps but just lots of hair gone each day and it's getting so very thing so I know it's only a matter of time. Let me know what you find out please.

[debonair susie]

Thanks a bunch for the tip about the hair spray, Patty... I had no idea there was such a product I'm going to pick some up!

Hugs, Susie

[Lillskuzi]

Me, too. My hair has been getting thinner and you can see my scalp on top. I get really self conscious about it. I wonder if it be a hormonal thing kicking in, too?

[Clementine]

My hair has lost it's shine too. I am sure it's all the meds building up on my hair and also side effects of meds. It couldn't possibly be decades of me over processing my hair, LOL!!!!!!!!!!!! Vee, Sheryl, I'm sure you get it, being fellow cosmetologists.
You can buy shampoo to remove build up or you can use vinegar, baking soda/water paste or even a beer. So many shampoos and conditioners are the culprit too. Mine's gotten thicker since I've gotten healthier but that's not saying much considering how thin it was to start with. Two years ago it was awful...broken, thin and dull. Now it's just very dry and dull .
I use all kinds of protein conditioners. If you want to know which one I LOVE, email me. I use the same shampoo (almost) as Peanut and hopefully it'll help too.
I think cutting it off is a great solution. I am thinking about chopping mine off.
Any ideas on a cute style? It needs to hide my tangelos.
Tangelo.

[epasen]

My hairstylist said to me when I first realized my hairloss, that after every 7 years people usually have time when their hair "changes", and losing hair sometimes is normal, but if it continues more than couple of months people should talk to their doctors.

Has anyone said anything to their doctors? What have they answered?

I'm really worried that I will lose all of my hair. I'm not ready, we have had a nice relationship together!

Take care of your hair
Emmi