For those of you that lost your hair due to lupus, what did you do during the time of regrowth?
Mine has been a very expensive, time consuming and lots of travel process to hide it. I'll still be paying next year, but the feedback from others has been a little esteem boost.
Hi, once I started methotrexate it grew back.. it was slow for me about 4 months. It still won't grow a lot. I have seen my nails and some arm hair regrowth since Benlysta.
I have a good friend that is a master hair colorist. I was very blessed that she had access to really good wigs for a lower cost. About $900 each at her cost. I have 3. Tons of hats.Yes, very expensive.
When I lost my hair, I was so depressed. I am now just getting my self esteem back. 2 years.
Wish the best to you
Hi, i had.lost 75% of my hair when i started on methotrexate, it took a few months to grow back but i use to keep if in a ponytail the whole time becausr i had patches everywhere… But now thank god its finally long and thick…but my haur is super straight and the new hair the grew back its super curly…
I was extremely depressed when I lost my hair it has been on different occasions. The first time I would buy wigs because I was working and very self conscience about my hair which at the time was very thick. The second time I just taught myself how to do a quick hairweave so that I would not have to see the patches. Thankfully I haven't lost any hair in the last year and it has grown back to the point I don't show any sign of hair loss.
I usually keep my hair in a pony tail. Every once in a while I wear cosplay wigs (anime-ish inspired colored costume wigs). I never really dyed my hair anything other than natural colors so sometimes it's fun to wear a blue or purple wigs. As for my natural hair, I continue giving it conditioning treatments and trimming when necessary.
-Shu
Before i had Lupus 5yrs ago...i could sit on my hair it was that long and thick until i woke one morning and a chunck had came out over night..so i skinned my head and i found several 50p sized bald patches ontop of my head they growed back grey, then since that i've growed it back 3times to shoulder length with it still brushing out besides washing it and the last time it went all thin in the middle of my head at the back...so i've skinned it again on grade1 and it's stopping like it....i don't care what other's think, my hubby does'nt mind and if anyone does stare if i go out because i do get odd looks....i stare back. To me at least i am keeping hair growth still there and i'm a person who's not out to impress other's.
I am loosing my hair. Its the worst thing ever. Im 27 and loosing my hair. Ahhhh but if it gets to bad i will just shave it off. And buy wiggs.
Benadine, that's great that your hair has had regrowth so quick. Mine started to grow after chemo treatments for nephritis. But because I have 2 cowlicks in the back I will need most likely 12 inches to comb over. My hair was mid back before. I have about 6 inches regrowth now, in 10 months. Two girls complimented me tonight at the beach on how perfect my hair was, I just smiled. I've not let them know yet about my lupus. Before the wig, I was very self concious and depressed. Its sort of a relief, but still constantly worried about it coming off at work and high winds. Thanks for sharing:)
Bernadine said:
Hi, once I started methotrexate it grew back.. it was slow for me about 4 months. It still won't grow a lot. I have seen my nails and some arm hair regrowth since Benlysta.
I have a good friend that is a master hair colorist. I was very blessed that she had access to really good wigs for a lower cost. About $900 each at her cost. I have 3. Tons of hats.Yes, very expensive.
When I lost my hair, I was so depressed. I am now just getting my self esteem back. 2 years.
Wish the best to you
Dunnia, thanks for sharing. Yes 75% is about what I lost, a gal from my lupus support group told me not to cut what I had left. That was some of the best advice because I have enough to pull back the new growth into sortof a pony tail for exercise. I have fine straight hair, so I've already got my difficulties. But its so interesting to see what my natural color is after coloring it most of my life.
Dunnia said:
Hi, i had.lost 75% of my hair when i started on methotrexate, it took a few months to grow back but i use to keep if in a ponytail the whole time becausr i had patches everywhere.... But now thank god its finally long and thick.....but my haur is super straight and the new hair the grew back its super curly......
Nudirection, I can totally understand about the need at work. I've had others (guys) tell me they don't understand why I want to hide it and everyone would understand. I believe we as women like to look beautiful or at least normal, I know I do. I've noticed in more than one post about patches, I've been asked this by my dermatologist and endocrinologist but haven't. It was alopecia totalias, but stopped at 75% because of chemo treatment. Hair loss is something I pray I'll not experience again. But if I do, well I know what to do.
NuDirection said:
I was extremely depressed when I lost my hair it has been on different occasions. The first time I would buy wigs because I was working and very self conscience about my hair which at the time was very thick. The second time I just taught myself how to do a quick hairweave so that I would not have to see the patches. Thankfully I haven't lost any hair in the last year and it has grown back to the point I don't show any sign of hair loss.
Cosplay, now that's fun. The funny thing is 2 years ago I made a hair album showing me in my blue, orange and red wigs for fun. Then I met a jewish orthodox family that told me about the custom of wives wearing wigs. I never expected 4 months later to wake up with a flare of lupus and losing hair. I'm so glad to know about options before everything went down. It sounds like you had some fun with it shu:)
Shu D. said:
I usually keep my hair in a pony tail. Every once in a while I wear cosplay wigs (anime-ish inspired colored costume wigs). I never really dyed my hair anything other than natural colors so sometimes it's fun to wear a blue or purple wigs. As for my natural hair, I continue giving it conditioning treatments and trimming when necessary.
-Shu
Wow, Tez_20, that's gotta be hard to have it so long. Mine also was long and it had take 3 years to grow that length. That's a good attitude. Tonight at the beach I saw a little girl bald, she was having fun with her family and friends. I smiled and thought how nice it is that we live in times when people are more accepting and aware that we are not immune to cancer and disease. People are getting younger and younger all the time, the same with lupus. In my LS group one girl is 16 years old.
Tez_20 said:
Before i had Lupus 5yrs ago...i could sit on my hair it was that long and thick until i woke one morning and a chunck had came out over night..so i skinned my head and i found several 50p sized bald patches ontop of my head they growed back grey, then since that i've growed it back 3times to shoulder length with it still brushing out besides washing it and the last time it went all thin in the middle of my head at the back...so i've skinned it again on grade1 and it's stopping like it....i don't care what other's think, my hubby does'nt mind and if anyone does stare if i go out because i do get odd looks....i stare back. To me at least i am keeping hair growth still there and i'm a person who's not out to impress other's.
27 is young. The gal that leads our lupus support group was 25 when she lost hers. She's been a great help in guiding me through some of this process. But I did a bit more research in wigs and traveling 2hours to chicago for many apointments to make it look as close to what I had before. But even better, now I'm hoping that my real hair can look simliar to what my wigs look like.
I started with wearing hats and transitioned to the wigs and then bought hats and had the hair sewn in them. I hope you can find some good stylist and options. Mine has taught me self maintenance at home with the right products and a steamer (mine is synthetic).
sunshinespraypaint said:
I am loosing my hair. Its the worst thing ever. Im 27 and loosing my hair. Ahhhh but if it gets to bad i will just shave it off. And buy wiggs.
Hello greensurfer,
My neighbour used to plat it for me and because i never had it layered she used to say it's like an horses tail but to grow that length it only take nearly 2yrs, it grows a fare bit first then really thickens out...it hurst me more when i see young girls and women with beautiful long shinny hair and i look back at how mine was done and i have 2" cut off it every 3mths and a deep auburn colour on it.
Well loads who know me say it does suite you, you carry the right shaped face for it so i'm lucky it's those that don't know me who stare mind you, having scares on my head off seizures does'nt help but in my eyes i'm still keeping growth there.
Now here in the UK for some reason people don't except illness like they do where you are or in the states, adults besides kids can be so cruel...they see someone having a seizure to them it's like a freak show if they've not seen one before and the kids here are so cruel to one another.
It's different people and different attitudes today...the teenagers here seem to be lacking less brains than when i was their age. xxx
greensurfer said:
Wow, Tez_20, that's gotta be hard to have it so long. Mine also was long and it had take 3 years to grow that length. That's a good attitude. Tonight at the beach I saw a little girl bald, she was having fun with her family and friends. I smiled and thought how nice it is that we live in times when people are more accepting and aware that we are not immune to cancer and disease. People are getting younger and younger all the time, the same with lupus. In my LS group one girl is 16 years old.
Tez_20 said:Before i had Lupus 5yrs ago...i could sit on my hair it was that long and thick until i woke one morning and a chunck had came out over night..so i skinned my head and i found several 50p sized bald patches ontop of my head they growed back grey, then since that i've growed it back 3times to shoulder length with it still brushing out besides washing it and the last time it went all thin in the middle of my head at the back...so i've skinned it again on grade1 and it's stopping like it....i don't care what other's think, my hubby does'nt mind and if anyone does stare if i go out because i do get odd looks....i stare back. To me at least i am keeping hair growth still there and i'm a person who's not out to impress other's.
Kids are cruel everywhere, just look at the teens that were ripping on that bus monitor in NY (I think) http://www.cbsnews.com/8301-501465_162-57458063-501465/bus-monitor-bullied-video-goes-viral-inspires-$223000-in-donations/
But there are people who care, just as you can see those who donated money and I'm sure people around the world will think twice before they say something.
Tez_20 said:
Hello greensurfer,
My neighbour used to plat it for me and because i never had it layered she used to say it's like an horses tail but to grow that length it only take nearly 2yrs, it grows a fare bit first then really thickens out...it hurst me more when i see young girls and women with beautiful long shinny hair and i look back at how mine was done and i have 2" cut off it every 3mths and a deep auburn colour on it.
Well loads who know me say it does suite you, you carry the right shaped face for it so i'm lucky it's those that don't know me who stare mind you, having scares on my head off seizures does'nt help but in my eyes i'm still keeping growth there.
Now here in the UK for some reason people don't except illness like they do where you are or in the states, adults besides kids can be so cruel...they see someone having a seizure to them it's like a freak show if they've not seen one before and the kids here are so cruel to one another.
It's different people and different attitudes today...the teenagers here seem to be lacking less brains than when i was their age. xxx
greensurfer said:
Wow, Tez_20, that's gotta be hard to have it so long. Mine also was long and it had take 3 years to grow that length. That's a good attitude. Tonight at the beach I saw a little girl bald, she was having fun with her family and friends. I smiled and thought how nice it is that we live in times when people are more accepting and aware that we are not immune to cancer and disease. People are getting younger and younger all the time, the same with lupus. In my LS group one girl is 16 years old.
Tez_20 said:Before i had Lupus 5yrs ago...i could sit on my hair it was that long and thick until i woke one morning and a chunck had came out over night..so i skinned my head and i found several 50p sized bald patches ontop of my head they growed back grey, then since that i've growed it back 3times to shoulder length with it still brushing out besides washing it and the last time it went all thin in the middle of my head at the back...so i've skinned it again on grade1 and it's stopping like it....i don't care what other's think, my hubby does'nt mind and if anyone does stare if i go out because i do get odd looks....i stare back. To me at least i am keeping hair growth still there and i'm a person who's not out to impress other's.
Hi greensurfer,
I watched that link and read the info, how disgusting towards a woman of her age...that's what i meant before we have it here bad with kids that age and alot older, it's like generations now are missing marbles to how we was....i was brought up to respect people but all you get today is abuse.
Tez, even in my day in the 80s kids were like that. Its this unending cycle that we see in society, sometimes we just become more aware of it. That video brought back memories of my time on the bus and what kids did to our bus driver. But some of the things they said in the video, no I didnt' hear. And to post it online, wow.
Well i think it's terrible how the lady suffered the abuse but it was excellent how much money was raised in helping her to achieve what she wanted but money can't replace what she went through and how certain words totally upset her....when i was 16 in the 80s i'd have been took for someone in my 20s as i had my head screwed on.
greensurfer said:
Tez, even in my day in the 80s kids were like that. Its this unending cycle that we see in society, sometimes we just become more aware of it. That video brought back memories of my time on the bus and what kids did to our bus driver. But some of the things they said in the video, no I didnt' hear. And to post it online, wow.
have any of you lost leg hair, underarm hair and bikini hair? Oh, and thinning arm hair. I'm not complaining about this, but scared its headed for my head. :-(
Hair loss was my first indication that something was wrong with me.. At first I put it on my beautician saying she used dirty tools in my hair and it caused my hair to come out and sores all over my head.. Then a few months passed and it was still coming out badly and shedding like crazy, I always had an excuse as to why.. Then finally I went to be seen because of some other problems that I began experiencing and that's when I found out it was lupus.. My doc put me on biotin to help with the hair loss and it seems to be working pretty well.. Finally I decided to do the weave thing (couldn't take that crap in my hair) so I went with a full wig that my cousin custom created for me right on my head.. I wore that for about 3 weeks let me tell you what took the cake. I was walking across campus (I work at a college) and it was windy out, and yep you guessed it my dang wig went flying off my head and I was more embarassed that I would have been to just be walking around with a half bald head... from that day on, I put a lite texturizer in my hair and decided to curl the little bit I did have.. I was lucky that when my cousin was doing my wig that she actually cut my hair into a cute little style to even it up and it was really kinda cute.. Needless to say I"m still adjusting to this short style and maybe soon I'll fall in love with it.. But for now it'll do and I just say the heck with it... I hope you find some relief cuz this can really be depressing.. I found myself slumping into a depression but caught myself before it went to far.. I was always told growing up that a woman's hair is her glory, but in fact it's my heart that give provides all my glories.. and the sooner we realize that the better off we will be.. So to you I say Good Luck and keep us posted.