I’m wondering how everyone deals with hair loss. I use to have super thick, long hair. And over the past year or so I’ve lost so much hair. My hair has become so thin, and brittle. I have to clean out my shower drain each time I shower. I know it’s due to the lupus, thyroid, plaquenil, and steroids. It’s so depressing and frustrating I’m really considering cutting it short so I can style it better and cover up the thinning/balding spots. I’m getting married in June and am worried ill be an ugly bride though And I’m worried ill really miss my long hair, but it’s really not very nice right now.
I cut my hair short- it does slow down the hair loss quite a bit (used to have hair down to my waist) I miss my long hair too but not enough to go bald!! :>)
I dealt with the same thing. Myth airways everywhere. Shower,floor, pillow,sheets. I felt like a shedding cat. My dogs shed less. My beautiful hair was falling out. I had bald spots. I cried. I mourned mohair.it felt stupid,but it was my hair! Then I decided to get mad and do something.i chopped it short to style over the bald spots and still look okay. I didn’t have energy for hair management anyway, so I went short, quick, easy. Then I bought hats. I needed a good hat for sun protection anyway. I even bough scarfs. I learned how to deal and even looked for inspiration in others who wear their bald or balking heads proud. I met teen girls who’ll through the hell of high school with balding heads, they inspired me to be strong and feel beautiful. I looked up hats for lupus and cancer patients. I picked out one to buy if my bald spots grew larger or if it all fell out. I would not let hair define me any more than lupus would get to. It’s hair, and they have wigs to put on heads. So a wig is another option.
Mine grew back in. It is now healthy again. Buti started on cellcept. I am told it will make my air fall out. So when it does, I will be ready again.
Today a friend came by and commented in how beautiful my hair is. She commented in a way to let me know how bad my hair was and that she more than noticed. They will notice. They will see. But let them. It’s hair. It’s not you. You’re so much more than a head of hair.
Pick a staple for the new you. Wear it proud. The pictures will be great. Congrats on your big day. Don’t stress, you will flare up. Just focus on what the day means and the joy it will bring to your lives.
I have thought about cutting my hair too but I love doing things with my hair that I haven't had the guts to chop it off. I am constantly pulling strands of hair out any time i touch it. I am just thankful that I had such a full head of hair before I got sick other wise Id be bald by now! I just tease everyone that when I get married I will have a ton of wigs and I will just have to ask my husband what he would like me to be that day. A blonde? or red head? ;) I see most of my hair loss on the top of my head so I find ways to hide it by parting my hair just right etc. I also wear alot of hats I have almost 40 hats now. I have also thought about doing these clip in hair extensions to give my hair more volume at the ends since I wear so many hats I am not to worried about the top. This is what I have been looking into....
I’ve just been recently diagnosed and I have to say my hair thinning is driving me CRAZY! I miss my long thick curls, now it’s so dry, brittle and falling out. But it could be worse, so I just tell myself “suck it up buttercup - you’re alive.” But I still have my bad days. I’m getting a cut in a few days and I started using Nioxin and my hair seems a little thicker.
Will my hair only shed during flares? Or is it an all-the-time thing with lupus? For me it’s not a meds thing…
I just chopped it all off to very short and I love it. It was so freeing and my stylist added a beautiful piece with color to help cover the bald spots. It was the best thing I could have done. I still get a little self conscious sometimes if I think the bald spot is not covered right but my stylist is so great she works with me and I bought a cute short wig for off days, it took some getting used to but I'm loving the ability to be able to switch up my look now.
I just was diagnosed last July. My hair, previously thick my whole life, was coming out by the handfuls. I cut my hair “A line” about 3-4 months ago, started taking biotin 10k mcg a day and using Organix biotin and collagen shampoo and conditioner.
I now have what I call Q-tip hair, new growth coming in, but it is almost all gray. I just turned 34. I plan on trying to let it grow longer, but I have to be honest, the gray… It’s starting to bother me.
Has anyone found an effective way of coloring hair without causing a flare up? My rheumy told me no dye, and no Rogaine.
I just was diagnosed last July. My hair, previously thick my whole life, was coming out by the handfuls. I cut my hair "A line" about 3-4 months ago, started taking biotin 10k mcg a day and using Organix biotin and collagen shampoo and conditioner.
I now have what I call Q-tip hair, new growth coming in, but it is almost all gray. I just turned 34. I plan on trying to let it grow longer, but I have to be honest, the gray.. It's starting to bother me.
Has anyone found an effective way of coloring hair without causing a flare up? My rheumy told me no dye, and no Rogaine.
Just curious; why did your Rheumy say no hair dye? I’ve been diagnosed for 12 years now & been coloring my hair since many years before then. I naturally have very thin ( yet a lot) hair & the biotin organix is great from their shampoos to their hair oil!
Ooooh, I hear this! Mine doesn't come out in clumps, thankfully, but it's distressing nonetheless. I had very long hair, and it was getting everywhere, worse even than our long-hair cat! It was so demeaning to find those long hairs on/in my clothes, on the floor, on the furniture... I was beginning to joke that you could follow where I'd been by searching for my hairs. I finally considered cutting it, but it was a big leap for me. I've had long hair all my life! But my mother had gotten her hair cut short (pixie cut) years ago, and she looks absolutely darling. Mother and I look very much alike, so I knew I'd look good with short hair. So I finally took the plunge. I didn't get a pixie cut, but it's still quite short. I love it! I'm lucky in that my hair, when long, was very straight... but short, it has a curl! So fun, and the added body due to not having the weight of my hair pulling it down all combines to make it easier to mask the thinning spots.
Wow! That was a big leap! I love it! It makes you look younger!
Talencia said:
Ooooh, I hear this! Mine doesn’t come out in clumps, thankfully, but it’s distressing nonetheless. I had very long hair, and it was getting everywhere, worse even than our long-hair cat! It was so demeaning to find those long hairs on/in my clothes, on the floor, on the furniture… I was beginning to joke that you could follow where I’d been by searching for my hairs. I finally considered cutting it, but it was a big leap for me. I’ve had long hair all my life! But my mother had gotten her hair cut short (pixie cut) years ago, and she looks absolutely darling. Mother and I look very much alike, so I knew I’d look good with short hair. So I finally took the plunge. I didn’t get a pixie cut, but it’s still quite short. I love it! I’m lucky in that my hair, when long, was very straight… but short, it has a curl! So fun, and the added body due to not having the weight of my hair pulling it down all combines to make it easier to mask the thinning spots.
I’ve been coloring my hair all along. I don’t flare up but I’ve developed an allergy to the dye. My scalp is itchy afterward. I just wash really good with my own shampoo. My hair used to be soo long n healthy. It was my thing. Everyone always loved my hair. I had cut it really short 1.5 yrs ago. Like a pixie. I hated it. Now, it’s taking FOREVER to grow back! Soooooo unbelievably slow. It’s in that inverted bob cut right now. It’s dry, brittle, and breaks constantly too. I don’t really know what to do with it anymore.
Thank you! It's so much more bouncy too, hehe! Turned out, I had chopped nineteen inches off! Didn't know I had that much hair! (No wonder it was pulling out like crazy!) I also feel 'safer' cutting it all off because my hair grows very fast. It took three months to go from that length to it touching my shoulders. If I want it short, I gotta keep on top of getting it cut!
Jend719 said:
Wow! That was a big leap! I love it! It makes you look younger!
I’m really considering cutting it short so I can style it better and cover up the thinning/balding spots. I’m getting married in June and am worried ill be an ugly bride though 
And I’m worried ill really miss my long hair, but it’s really not very nice right now.