I had been wondering if it was a side effect of SLE as well. I’m on both too Hydroxychloroquin and plaquenil and they help so much. Before I was diagnosed in March my hair started thinning out and then falling out by the handfuls. My Hematologist told me not to worry that it wouldn’t completely fall out but it had gotten so bad I ended up cutting it really short up to my shoulders. I have never had my hair this short its growing back very slowly and keeps falling off started taking biotin and folic acid to help it was scared to be bald, sure it might sound silly but with the weight loss and now my hair it made me feel very bad about myself. I know it’s just superficial but I’m a woman the way we look matters to us. Was wondering is your scalp being itchy and hair falling off so much a symptom or a flare? For all those battling Lupus for years now? Will it eventually grow back?
This was just discussed on here recently! :) I have Systemic Lupus related Dermatitis. I actually went to a dermatologist to make sure I didn't have Discoid Lupus on my scalp. It causes flaking, redness, itching, and hair loss, but unlike Seborrheic Dermatitis it is not greasy, and the plaques are not thick. Between the SLE Dermatitis and SLE I've had all over thinning, but it's thinnest from ear to ear. Basically, the hairline (forehead) to the middle of the top of my head. Below my ears, the hair is thicker. I've done a lot of research in this topic, and I found that this is a common SLE hair loss pattern. From what I've read, and what I've been advised by my dermatologist, it's inflammation related. The hair follicle is basically "attacked", causing the hair to fall out at the root. SLE causes this internally, and then the Dermatitis causes this topically. I also read that hair loss resulting from inflammation whether it be from Lupus or Chemo etc. are some of the only forms that can actually alter the structure of the hair, and I have absolutely found this to be true. I now have very wavy, curly hair. It's been an adjustment for me. I am grateful for the hair that I have, and I hope it continues to grow in, but I used to have wash and go hair. That is not the case anymore. If I do that I will look like I escaped from a jungle. Some have noted they've had a lot of luck with Nioxin (and someone here mentioned using the Mane 'N Tail conditioner on their scalp---I have not tried this). Nioxin unfortunately did not work for me, but I have a skin condition on my scalp that Nioxin doesn't treat. Selsum Blue Naturals (the other forms of Selsum Blue are really potent) has really helped control the Dermatitis, which in turn has allowed for my hair to start growing back. Another change I've made is that I lightened my hair (not bleached). The hair loss is not as obvious as it is when it's darker, because it blends a bit better with my scalp, and when you lighten your hair is actually causes the cuticle to expand, making it a bit thicker. You just have to be careful you don't cause further irritation. This sort of hair loss tends to cycle through periods of activity and remission. When the inflammation is active, be gentle with your hair. When you're drying it, gently compress it in a towel. If you must blow dry, use a low setting. The force of a blow dryer on high can be enough to blow it off your head. I've have read this and done it. If you can, buy quality hair care products. Whether that is organic or salon quality. I use Selsum Blue alternately with a salon shampoo, or I mix in a bit of both. I leave it sit on my head a bit before rinsing, and I think that helps. I use a root boost product to help thicken at the roots, and I do a deeper part. If you can, try to change up your part. I read that repeatedly parting your hair in the same place can focus hair loss, because it repeatedly stresses the hair in one area. I try not to overload my hair with product also. This can be drying, and it can cause additional build up on the scalp. I use a product called Tamerfoam. It's a gel mousse type product. A little bit goes a long way! It adds body, and helps control the waves and frizz. I also use a drop or two of a silicone based product. It controls frizz and it adds shine. I keep my hair at about shoulder length, as that seems to work best for me; for ease and hair loss. I like to pull it up, but I have to be careful I don't pull it back too tightly as that will further hair loss. Goody makes rubber bands that have a rubber coating on them to help them stay put. I love them, because unlike traditional hair ties, you don't have to twist them so many times to get them to stay put, and even if your hair isn't very thick they still stay in place. I hope some of this has helped you! Hair loss is miserable. It has brought me to tears more than a time or two. I wish you hair and hugs. :)
Hair loss is unfortunately normal for lupus. Like nicole earlier, mine fell out quite badly for awhile due to sle, then chemo drugs. I had to wear wigs for awhile. Nioxin really helped me though individual results may vary. Nicole is correct, when it falls out, it comes back different! I had thick but fine hair…now I have coarse wiry hair not so thick. Weird! Short hair does help, my hair stylist said the longer the hair is the more gravity pulls on it? I dunno, makes sense. Hope you find a treatment that works
Hi this is Kat. I have had Lupus for many years but it seriously hit me right after my husband died. I lost handfuls of hair and thought I was going to lose it all. Rather then wigs I started using ad one and it looked so natural and made my hair look full and as long as I wanted. They were a God send. I upped my biotin to 20,000ml and added gelatin. The special hair vitamins do nothing and neither did nioxin, or nexus products. Eventually my hair started to restore itself and I was even able to stop using the hair add ons. My hair grew fast and longer then ever before because I didn’t stop the bioton. About a year later she some other stress caused a flare up I started losing hair again. It’s not as bad because of the biotin. I know that it will atop again so I just where my hair differently for awhile. Make sure you use a clear shampoo, they clean much better, and once a week use a clear deep cleaning shampoo to get all that hard water residue off the hair shaft. It wont feel so cotton like and it will feel silkier. I pray for all of you who have Lupus and any other debilitating disease. Kat
Thanks alot for all the advice I started ucing that maine and tail shampoo and conditioner not sure if it’s helping but hoping that once my SLE is under control it will start getting better. Thank you all for you advice and God bless.
nicoleinwisconsin said:
This was just discussed on here recently! I have Systemic Lupus related Dermatitis. I actually went to a dermatologist to make sure I didn’t have Discoid Lupus on my scalp. It causes flaking, redness, itching, and hair loss, but unlike Seborrheic Dermatitis it is not greasy, and the plaques are not thick. Between the SLE Dermatitis and SLE I’ve had all over thinning, but it’s thinnest from ear to ear. Basically, the hairline (forehead) to the middle of the top of my head. Below my ears, the hair is thicker. I’ve done a lot of research in this topic, and I found that this is a common SLE hair loss pattern. From what I’ve read, and what I’ve been advised by my dermatologist, it’s inflammation related. The hair follicle is basically “attacked”, causing the hair to fall out at the root. SLE causes this internally, and then the Dermatitis causes this topically. I also read that hair loss resulting from inflammation whether it be from Lupus or Chemo etc. are some of the only forms that can actually alter the structure of the hair, and I have absolutely found this to be true. I now have very wavy, curly hair. It’s been an adjustment for me. I am grateful for the hair that I have, and I hope it continues to grow in, but I used to have wash and go hair. That is not the case anymore. If I do that I will look like I escaped from a jungle. Some have noted they’ve had a lot of luck with Nioxin (and someone here mentioned using the Mane 'N Tail conditioner on their scalp—I have not tried this). Nioxin unfortunately did not work for me, but I have a skin condition on my scalp that Nioxin doesn’t treat. Selsum Blue Naturals (the other forms of Selsum Blue are really potent) has really helped control the Dermatitis, which in turn has allowed for my hair to start growing back. Another change I’ve made is that I lightened my hair (not bleached). The hair loss is not as obvious as it is when it’s darker, because it blends a bit better with my scalp, and when you lighten your hair is actually causes the cuticle to expand, making it a bit thicker. You just have to be careful you don’t cause further irritation. This sort of hair loss tends to cycle through periods of activity and remission. When the inflammation is active, be gentle with your hair. When you’re drying it, gently compress it in a towel. If you must blow dry, use a low setting. The force of a blow dryer on high can be enough to blow it off your head. I’ve have read this and done it. If you can, buy quality hair care products. Whether that is organic or salon quality. I use Selsum Blue alternately with a salon shampoo, or I mix in a bit of both. I leave it sit on my head a bit before rinsing, and I think that helps. I use a root boost product to help thicken at the roots, and I do a deeper part. If you can, try to change up your part. I read that repeatedly parting your hair in the same place can focus hair loss, because it repeatedly stresses the hair in one area. I try not to overload my hair with product also. This can be drying, and it can cause additional build up on the scalp. I use a product called Tamerfoam. It’s a gel mousse type product. A little bit goes a long way! It adds body, and helps control the waves and frizz. I also use a drop or two of a silicone based product. It controls frizz and it adds shine. I keep my hair at about shoulder length, as that seems to work best for me; for ease and hair loss. I like to pull it up, but I have to be careful I don’t pull it back too tightly as that will further hair loss. Goody makes rubber bands that have a rubber coating on them to help them stay put. I love them, because unlike traditional hair ties, you don’t have to twist them so many times to get them to stay put, and even if your hair isn’t very thick they still stay in place. I hope some of this has helped you! Hair loss is miserable. It has brought me to tears more than a time or two. I wish you hair and hugs.
Hi Mary! I can relate! I don't take anything medical yet, but I do take a bunch of (well not really a bunch) but biotin, and biotin with a multivitamin. I hate it. My hair is thin and you can see my scalp in the back a bit. I have to figure out a way to move my hair around to cover it up. I have my hair short, I don't like it and I'm trying to grow it back as well. I have a wig that I wear or a hat. I know having Lupus SLE causes hair to fall out. I have seen my hair grow back, but slowly. My hair stylist said the top of my head looks a bit thicker, so that is good. Hopefully that helps somewhat knowing that it does grow, it's just slow. :-)
I am so sorry you are losing your hair! I completely understand where you are coming from! I started noticing my hair to fall out a year before being diagnosed I just shrugged it off as what ever. I used to have such nice thick hair and now I hardly have anything and I still go through periods where it’s not as bad at then others it just falls out like crazy. I know the feeling of not feeling good when your hair is falling out and you gain so much weight. What I did for my hair (as I to cut it short) I bought clip in extensions I LOVE them! I feel so much more comfortable and confident! I hope that helps and I hope you can find something that helps you! have a great day!
Thank you all so much for taking the time to reply to my questions and all the advice. I know that with this disease we will face so many more challenges than hair and weight loss but the way we look matters to us because we are women, and as it is it’s extremely hard to stay positive and try to keep our stress to the lowest when our hair is falling off by the handfuls but glad to know this too shall pass and it will grow back eventually god bless and thanks again.
I have Systemic Lupus related Dermatitis. I actually went to a dermatologist to make sure I didn’t have Discoid Lupus on my scalp. It causes flaking, redness, itching, and hair loss, but unlike Seborrheic Dermatitis it is not greasy, and the plaques are not thick. Between the SLE Dermatitis and SLE I’ve had all over thinning, but it’s thinnest from ear to ear. Basically, the hairline (forehead) to the middle of the top of my head. Below my ears, the hair is thicker. I’ve done a lot of research in this topic, and I found that this is a common SLE hair loss pattern. From what I’ve read, and what I’ve been advised by my dermatologist, it’s inflammation related. The hair follicle is basically “attacked”, causing the hair to fall out at the root. SLE causes this internally, and then the Dermatitis causes this topically. I also read that hair loss resulting from inflammation whether it be from Lupus or Chemo etc. are some of the only forms that can actually alter the structure of the hair, and I have absolutely found this to be true. I now have very wavy, curly hair. It’s been an adjustment for me. I am grateful for the hair that I have, and I hope it continues to grow in, but I used to have wash and go hair. That is not the case anymore. If I do that I will look like I escaped from a jungle. Some have noted they’ve had a lot of luck with Nioxin (and someone here mentioned using the Mane 'N Tail conditioner on their scalp—I have not tried this). Nioxin unfortunately did not work for me, but I have a skin condition on my scalp that Nioxin doesn’t treat. Selsum Blue Naturals (the other forms of Selsum Blue are really potent) has really helped control the Dermatitis, which in turn has allowed for my hair to start growing back. Another change I’ve made is that I lightened my hair (not bleached). The hair loss is not as obvious as it is when it’s darker, because it blends a bit better with my scalp, and when you lighten your hair is actually causes the cuticle to expand, making it a bit thicker. You just have to be careful you don’t cause further irritation. This sort of hair loss tends to cycle through periods of activity and remission. When the inflammation is active, be gentle with your hair. When you’re drying it, gently compress it in a towel. If you must blow dry, use a low setting. The force of a blow dryer on high can be enough to blow it off your head. I’ve have read this and done it. If you can, buy quality hair care products. Whether that is organic or salon quality. I use Selsum Blue alternately with a salon shampoo, or I mix in a bit of both. I leave it sit on my head a bit before rinsing, and I think that helps. I use a root boost product to help thicken at the roots, and I do a deeper part. If you can, try to change up your part. I read that repeatedly parting your hair in the same place can focus hair loss, because it repeatedly stresses the hair in one area. I try not to overload my hair with product also. This can be drying, and it can cause additional build up on the scalp. I use a product called Tamerfoam. It’s a gel mousse type product. A little bit goes a long way! It adds body, and helps control the waves and frizz. I also use a drop or two of a silicone based product. It controls frizz and it adds shine. I keep my hair at about shoulder length, as that seems to work best for me; for ease and hair loss. I like to pull it up, but I have to be careful I don’t pull it back too tightly as that will further hair loss. Goody makes rubber bands that have a rubber coating on them to help them stay put. I love them, because unlike traditional hair ties, you don’t have to twist them so many times to get them to stay put, and even if your hair isn’t very thick they still stay in place. I hope some of this has helped you! Hair loss is miserable. It has brought me to tears more than a time or two. I wish you hair and hugs. 