This is my first post on here as I've only just discovered this amazing community exists! It's so reassuring to find it's here.
I was diagnosed with SLE in December 21, after a few hospital admissions with recurrent pericarditis. I was put on prednisolone (various doses, flare dependent), Azathioprine and Hydroxychloroquine.
Since March 22, I've noticed gradual but worsening hair loss, most notable around my hairline and temples. I wasn't even sure it was really happening at first, or if it was just in my head. Now the loss is obvious and, to me, very upsetting as I feel as though I'm just watching the problem get worse and am powerless to stop it. It's seriously affecting my confidence (I'm paranoid about what my hair looks like and scared to look in the mirror for fear of what I might see). My rheumatologist is not interested at all in the issue and has referred me to dermatology, though I've not yet received an appointment.
I've been taking biotin supplements, using Essynaturals Hair Growth Oil and Nioxin shampoo (though I've just switched to Olaplex). I've even had tape hair extensions put in as my thinning hair has been getting me down so much.
I'd love to know whether anyone has experienced similar hair loss, whether this has stabilised at all, or if you found anything to help? Did you also find that the hair loss was a result of the disease or your medication?
Thank you all - any advice or sharing of experiences would be so appreciated!
Fran x
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chescatorri
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Goodness this must be quite a shock and very upsetting for you. Especially as you are young. Unfortunately, I do not have any helpful advice for you as since having chemotherapy in 2021 my hair loss has reduced.Let's hope the dermatologist can give you some suggestions to support you. If you have not heard about the appointment for six weeks it might be worth chasing them up directly?
Sending you a hug and remember you can get through this. We are here for you. 🌻
Thank you PositiveT! 💛 I think it's been about six weeks since rheumatology referred me so probably time to chase. Thank you again, it's wonderful to know there are people out there who get it! x
Hi, my hair is also very thin and possibly getting worse. I had chemo a few years ago but my hair came back wavy which was super. 2 years on and it’s back to thin straight hair. I take hydroxy, not on steroids just now. I use the shampoo you use, I was thinking of the supplements, it’s so annoying isn’t it. My hubby bought me a ghd hot brush which is good as it gives my hair a bit of volume and use mousse that also helps, I could pull a strand of hair out and not feel it, it’s as if it’s not attached very strongly. I have my wigs on hand if it gets worse but hopefully it won’t get to that stage. Sorry I’m not that much help to you, best wishes. Do you think the supplements are helping?
Hi Lizard28, sorry to hear you're also struggling with the same thing. I know what you mean aboout the hair not feeling like it's attached very strongly, I feel like I see weak, thin, baby hairs all over my desk at work and the sink/shower at home. Are you using Nioxin or Olaplex? It's all helpful to hear so thank you, best wishes to you too - I hope it only gets better. I think it's a bit early to tell with the supplements but at the very least they help me feel like I'm doing something to try to help if that makes any sense at all! 🙈 x
I use Opalex shampoo and conditioner, I’ve also tried Lee Stafford hair growth shampoo, but will try some supplements now as it’s getting worse. We will try anything. Best wishes
Hi chescatorri, I was diagnosed with sle lupus in December 2019, I had bald patches at the time and my dermatologist was very helpful, she was talking about trying out some wigs but during the comings weeks with my meds getting into my system my hair started to grow back, I would suggest getting in touch with your dermatologist about this, I wish you well. X
Dear Fran, I’m very sorry to hear this. Our hair is part of who we are and losing it is terrifying. I started to notice how much mine was coming out in the shower (handfuls)…but actually it was also shedding everywhere a couple of months ago.
I spoke to my hairdresser who gave me nioxin shampoo/conditioner and the stuff you rub into your scalp. It was good, but I suspect only makes hair feel thicker. What do you think of Olaplex?
I also started taking Biotin, collagen (absolute collagen) and fish oils (2g of Bare Biology) . Hairdresser said brush your hair (gently) before you wash it, and try to wash it less often. I think it’s making a difference..I can certainly see lots of new growth.
I do think going to a dermatologist is a good idea. I think there is a medication that helps.
Good luck with it, be gentle with your hair and kind to yourself.
Hi Lorna, thanks so much for your lovely message. It's so nice to chat to others who understand how it feels 💛 Have you noticed any new growth from the Nioxin? Or do you think the supplements are having more of an effect? I've only just started with the Olaplex so it's probably a bit too early to say! Great to hear you're seeing lots of new growth, hopefully I'll get there too soon! Thanks so much again x
Hi Fran. Frontal fibrosing alopecia and Central centrifugal cicatricial alopecia are well documented comorbidities with SLE. It could also be related to Telogen Effluvium which can affect hair growth when disease is active.
I have diffuse CCCA which has been progressing and recently got worse because I am anaemic, so maybe have your doc run a full blood count. Hair clinic are the best people as they can do a dermoscopy/biopsy to get to the bottom of it and prescribe treatments that could help. Like Puffyface said, go easy with it. Best of luck.
So sorry you are having to deal with hair loss esp at a young age. I have SLE and with the first thinning in patches and hair loss, the dermatologists did biopsies and gave me anti inflammatory cream with the assumption it was lupus tho no proof then. After a while it grew back but she told me that eventually I would need a wig but quite a few years went by -then in 2003 after a holiday in the tropics it fell out big time and my whole scalp became seriously inflamed. Dermatologists no help this time -diff hosp - and still no diagnosis until 2007. Then the rheumatologist apologised for his colleagues and thought I might still have hair if I had seen him earlier! So I wasn't on steroids or any treatment when this happened -its the disease. It took me a while to get used to it, but I have been wearing wigs for nearly 20 years now, and people do not know unless I choose to tell them. I invested in eye makeup and use my mind to help me understand that whilst lupus can be very nasty, this is much less than some people have to deal with. I have a few tatty bits of hair that grow around the edges and I shave them off about once a month. When you need a wig, NHS will pay half, you get 2 per year. Monofilament are more comfortable because they breathe, esp in hot weather tho they cost sl more. Hospitable appliance Dept deal with this. I hope you wont need to though despite all I have said. xx
It could have been my own story. It’s horrible realising you are losing your hair and a wig makes a huge difference to your confidence. I am sorry for anybody going through it. You are right that there is far worse out there that people have to undergo but it’s relative, and hair loss is a big challenge to get through. I have been buying wigs for a long time now but the NHS won’t pay anything towards mine. That makes it extremely expensive for me and so I wear my wigs until they look like a birds nest. I often feel really embarrassed. Please will you let me know how you have managed to pay only half towards yours? I will be most grateful. 😊
Thank you and sending my best wishes and complete understanding to anybody else going through hair loss
I know that chemo patients get help and rightly so, but I wish that help could be extended to others going through hair loss too.
Thanks Margaret. It has changed - so now your GP has to refer you to the Appliance officer at your local hospital. They will see you, refer to a local wigmaker and ask you for a cheque (last time I did it -not up to date!) and sends the authorization to the wig maker so you can make an appointment to get your wig. I try and buy 2 together so I can alternate them and make them last longer but its still quite a lot of money now, esp if like me your head sweats a lot and you need monofilament wigs, which look better too. Since the appliance service shut down for about 2 years with covid, I went online and found what I want from Simply Wigs. When I went back to the wigmaker after, her supplier didn't do the one I wanted, so I am doing my own thing again! Hope that helps. Looking and feeling good is a big issue for us all.
Yes Margaret. No discount if I buy direct but I don't pay VAT. IF you go via the GP to Appliances you will get about 40 -50% reduction on the total price. The wig supplier will offer you the best they can that suits you. I just didn't like what was on offer last time and I need to be happy to wear it! I had been with the same wig maker for 15 years, but was needing to go grey and she understood her selection was limited. I can always go back if I want to.
Hi, I have SLE for over 30 years now, about 8 years ago I was put onto Methotrexate Injections and my hair started falling out, I was prescribed folic acid to take 1 a day for the 6 days between injections and it helped. My hair isnt so thick, but its not got any thinner xx
Hi Poshcards, really interesting about the Folic Acid - my consultant put me on it originally then took me off, I'll see if it's an option to go back on it and see if it helps me too. Glad to hear your hair loss hasn't got any worse since 😊 x
Hello! I was diagnosed with SLE in nov 22 and i experienced a lot of hair loss and i can completely relate to the confidence knock. My hair was naturally so thick long and curly and it was falling out in clumps, esp in the shower, and i had patches as well as the hair thinning similar to what you described. I spoke to a dermatologist who said i was also getting alopecia secondary to the lupus which wasnt fun so I dont think it was medication related. I know exactly how you feel, I would cry every day and I hated the way i looked in the mirror and its awful and scary. But I would firstly like to say, we notice it more than others would - many people said it wasnt as obvious as I thought it was which was reassuring.
Anyway - theres hope! Mine has begun to grow back! The patches are beginning to cover up and it seems to be falling out a lot less. I began to be a lot gentler with products i used, i avoided any heat and washed my hair less regularly. I also take biotin supplements which seemed to really help as well as hair growth gummies you can buy over the counter. I was also prescribed dermovate steroid cream by the dermatologist which reduced the itching and inflammation around the patches ( i think that was more for the alopecia tho). I am also on azathioprine which seemed to kick in around now which may be also why its beginning to reduce the hair loss. In fact I am on the exact same drugs as you - how long have you been on them? I also bought hair touch up products to cover up any obvious thinning around my hairline and temple which made me feel less insecure.
I am 21 so it really was rough and i completely understand how tough it is, for weeks I didnt even want to leave the house especially with my hair being one of my defining features of my appearance - but it gets better! people would tell me my beauty comes from more than just my hair and i never took it in because it wouldnt help but honestly we do notice it more than others. I am so sorry youre experiencing this it really an awful part of lupus and I hope this helps in some way. Sending love and hugs xxx
Hi nada28 , it's honestly so reassuring and comforting speaking to people who have experienced the same thing and understand how scary it can be - thank you so much for your lovely message. I've been on Azathioprine and Pred since I was diagnosed in December 21, but they put me on the Hydroxychloroquine later (I think around May 22). I've been a bit suspicious that my hair loss is related to the Azathioprine, having spoken to a couple of people who have experienced hair loss while taking it, but it's wonderful to hear it seems to be helping reduce yours 😊 I didn't know you could get touch up products so thank you, I will definitely look into these and get some to help me feel less conscious of the really thin patches. Your message has definitely helped me to feel not so alone so thank you so much again 💛 x
Hi Ches. Hair loss for many is one of the first signs of autoimmune diseases/lupus. It was for me in my 20s. It took almost my whole life to get a proper diagnosis for a variety of reasons but mostly because I have other AI diseases. I’m 65. If I could go back to my younger self I’d tell myself to stop being the victim and do what you need to do to feel better. The first time I shaved my head I went into the local barber and he never asked me a thing. Just shaved it. I was 38 I think. Incredible sense of empowerment. I wore hats and great lipstick. My hair grew back thick enough to wear in a great style. It has gone through falling out stages especially with stressful times in my life. Fast forward three days ago I shaved it all off. Got tired of a bald spot in front. Empowering. Hats and lipstick. Sure I’ve tried shampoos etc. I have some hairpieces now I love! My sister said to me: Own it. Take back your power. And that’s what I offer you: Own it. No shame.
Thank you MrsMarigold - gosh that's so inspiring to hear! I bet you look amazing, hopefully I'll have the confidence to be as bold as you should my hair continue to get worse. Thank you again x
Hi Ches. Another thing that helped me a lot is an internet group called the women’s hair loss project. So much great information and support. Many hairloss alternatives now for women. Like Florence above who looks great, I have sought my own hair pieces. My biological hair is now white and I love it or loved it lol. So as Florence said it’s more difficult to find quality that you like in grey. But you aren’t there yet. !!! I hope you try the link above. Best, MrsMarigold
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