Has anyone dealt with extreme hair loss? If so, does it come back?
I have hair loss but my rheumy thinks its from the lupus it does come back. She put me on biotin over the counter and it seems to help. She also suggested i shorten my hair which i am not going to do for personel reasons. My hair touches my behind and this is the shortest its ever been. I tend to loose more during the summer.
Oh yes! There are questions about the cause, several possibilities are autoimmune, Lyrica, undetected Thyroid problems, Sjogren's. Who knows what else could be involved!
I have only had little hair loss but all my eyelashes fell out. Thanks to being diagnosed with glacouma and started using the drops there growing back.
pb, I had no idea your hair was THAT long! I applaud you for being able to put up with the care! When mine touches my shoulders it drives me nuts, but coloring it is a factor too! I do my own coloring, and usually color the counter tops and floor!
My hair has been falling out for years, long before I colored it, so I suspect it really is autoimmune. It is thinnest where I need it most, top front! Even though you would think short would be best, it is less noticeable longer. It is also best longer as there is not need to tease it, or use root lifter and all of that goop!
I have massive hair loss. My hair was down to my buttocks as well, but I recently had to cut it to my head (chin area)as my pony tail became a rats tail, and looked bad. After I came home, I cried. I am growing hair back, but it isn’t nearly as thick as it was. I am heart broken with my hair loss, and I hope it grows back to the way it was.
I take Biotin, Zinc and Omega 3. It seems to help my nails, and maybe my hair. My rheumy told me we get new hair growth every 3 months, which I hope is true. But a nurse practitioner who had SS,said I will still lose hair until I get my SS under control. I think it is finally gritting under control, because I do have new hair growth.
I wish you luck. I know it can be devastating, with the hair loss. Hugs
Good topic, Confused. SK -- yes the front top is my worst part!!! I wish I knew a way to bring back my hair. I don't like other people being able to see my head. I tried a product online which had good reviews at Amazon, but I couldn't get my hair back being on it for 3 months. I tried so many things but another member suggested massaging coconut oil in every night. I think she saw new growth in 2 months. So I just started that. I use Caboki when I go out in public to cover up the horrible hair loss. Yes, I think it's most all SS because my thyroid has been normal again for months and no hair has been growing back. Then people talk about hormones -- but I went thru an early menopause 11 years, but I didn't lose this kind of hair until 2-3 years ago when I first noticed my mouth was so dry at night. So this is a SS thing for me, I think. So far I have saliva glands, just starting with dry eyes, hair loss, and pancreatic enzyme loss.
I've had moderate hair loss. But, the strands of hair are like spider web thick. Drives me nuts getting in my eyes and nose.
Colored my hair since I turned 40. Was at my wits end and wanted to shave my head and get a wig. Last Sept my "niece-in-law" recommended a hair salon. Went to a "hair stylist" and she came up with such a wonderful style. I wish I had done this sooner. New side part style and don't have to color my hair. The natural graying makes my hair look professionally streaked. People who look at it think I had the coloring done. Plus the side part covers my thinning top.
You got to hold on.
I just started to use this dark powder stuff on my scalp in the front.It works very good for me. It's so scary because my hair was always naturally beautiful, thick and shiny. It's like it was my crown. I'm praying that my hair comes back.
Fascina said:
I have massive hair loss. My hair was down to my buttocks as well, but I recently had to cut it to my head (chin area)as my pony tail became a rats tail, and looked bad. After I came home, I cried. I am growing hair back, but it isn't nearly as thick as it was. I am heart broken with my hair loss, and I hope it grows back to the way it was.
I take Biotin, Zinc and Omega 3. It seems to help my nails, and maybe my hair. My rheumy told me we get new hair growth every 3 months, which I hope is true. But a nurse practitioner who had SS,said I will still lose hair until I get my SS under control. I think it is finally gritting under control, because I do have new hair growth.
I wish you luck. I know it can be devastating, with the hair loss. *Hugs*
Yeah, that sounds very similar to the stuff I use, too, Confused. I pray our hair comes back, too. I really get my slapping hand twitching when my doctor tries to tell me "That's normal". It gets my ire up when they get that dismissive attitude -- which she gets all the time. This much hair loss is NOT normal. So I hope we can get well enough or something for it to grow back.
If no one minds, I'd like to piggy back on this, since I think the issues may be related. Is anyone else having crazy problems with their nails too? My hair goes through bouts of thinning but even when it isn't, it breaks very very easily. I take Biotin and Flaxseed along with my multivitamin with extra (plant based) Omega-3. It seems to be helping over the last several months. My nails, however, just don't seem to get better. I have to keep them short because they break very easily, and its usually a split or actually peeling apart. I have to keep them nourished and polished to have any hope at all of not dealing with the breakage. Plus they just look awful on their own.
Is anyone else dealing with this?
Yet again with the silent disease, LOL….my nails are always done so I look put together but its really self-preservation.
Absolutely! My nails do the exact same thing! My Rheum always looks at my fingernails! They tell such a story!
Seems you are taking all the right stuff, Enjoylife!
DLT, lookie here! I see this in my near future!
http://www.wigs.com/easibangs-human-hair-clip-in-bangs-1pc-by-easihair.html
I actually saw Daisy Fuentes on the Marie show, and she looked great, her hair was beautiful, at the end of the segment, she unclipped these bangs, even the close ups did not show any difference between these and her hair!
Thanks, SK. For some reason, I couldn't get that link to pull up. It sounds like those look very nice, though. It's nice to have things available like this so we can feel 'normal' on the outside at least until we can figure out another way to get our hair to grow back. I had a friend years ago -- and no one wanted to tell her -- that she had a huge bald spot on her head right at the crown. No one wanted to be rude or hurtful either and we assumed she knew, but it turns out she didn't until she saw her head in a video someone was doing! She went to a healer who told her to eat fish. She was a vegetarian and disgusted by that. But, she at the fish --- and that hair grew in. It was amazing. But I would think it was the Omega 3's -- which so many of us are already doing and it's not solving the problem when we have SS. I'm doing the coconut oil scalp massage (just on the front top) every night now so I'll let you know if I should see some new growth in 2 months.
SK said:
DLT, lookie here! I see this in my near future!
http://www.wigs.com/easibangs-human-hair-clip-in-bangs-1pc-by-easih...
A member on another group uses salmon oil sups, they are even higher in the omegas. Sorry about the link. Just google Daisy Fuentes bangs and it will come up. The human hair bangs are $99. I’m not sure if they have synthetics. I’ m on the phone haven’t figured out how to cut and paste links on this yet! You can occasionally teach this old dog a new trick, but it takes many tries! HA!
Omega-3 are difficult for me as I am allergic to shellfish & seafood. I take a 1000mg supplement but if anyone has any other hints on how to get a decent amount of it, I'm open to suggestion!!!!!!
http://www.wigs.com/wow-bangs-by-luxhair.html
Hopefully this link will work for you, it actually shows how you clip these on, and they are only $20.
Hi EnjoyLife - I'm also allergic to shellfish so I take Omega 3's from Chia Seed Oil in capsules or Flax Seed Oil.
Thanks for the link, SK! Unfortunately, I look hideous in bangs, but you look great in them!
DLT, you can always sweep them to the side! There is also a piece I've seen them put on Joan Rivers. I'll do my best to explain how it's worn.
If you part your hair to the left, to insert this clip, you pull your hair to the right, clip it in, and pull your hair over it to the left part, it goes UNDER your hair, this makes your hair look so much thicker! I'll look for it!