Hair loss

How many of you have or are experiencing hair loss. It's getting me down especially when I'm in a flare it's worse. Im taking folic acid. Biotin and vitamins for hair but nothing seems to be making any vast difference. Please tell me that this will settle down and my hair will grow back. Has anyone found a way to prevent it or improve their hair loss? I'm so fed up with it all

21 Replies

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  • Me I haven't found anything that helps ive now started to wear clip in hair which isn't good you can't get the exact colour

  • I'm going to keep searching and will update if I find anything that makes some difference. It's good you can use clip ins but I'm scared they will pull out what's left of my hair!

  • I mentioned this to my hair stylist, and he said the negative attitude is not good. Try biotin. And its all a part of aging. Felt like telling him to look the disease up and get back to me what a hair dresser would recommend. I am fed up too discussing this with anyone. There are plenty of people who have a full head of hair and are older. And no one seems to know what the heck Lupus is, and I am fed up with trying to explain it. I was walking around the other day saying to my family, I am out of spoons. I need help. It seemed pretty funny and we laughed. Even me. The general public just doesn't get it. .........My hair falls out, but it will grow back too. Frustrating..maybe someone has an idea. I will let you know next time I go to my hairdresser what he recommends. I have just started biotin yesterday.

  • I know exactly what you mean. If people font understand about lupus they think you are making a fuss about nothing as u look normal! It's frustrating because they think it's like a headache if you tell them you are having a flare so just take a paracetamol!! If only.. Its bad enough having this horrible disease but having this devastating hair loss as well is horrible. It takes away your confidence and find yourself looking at other people'speople's hair. Im taking my biotin as it's meant to be good. I've noticed my hair getting longer but keep waiting for the thin patches to show some sort of growth! I will keep trying anything and keep searching for something that will help. Good luck with the biotin I hope it makes a difference 😄

  • Oh I hear you I have started using kerastase for hair loss it is liquid solution i apply at night, ulta and hair salons carry it. My issue is the breakouts I get on my scalp where I am too embarrassed to go to my hairdresser they get scabby and painful. My rheumy suggested also no artificial dyes but that is next to impossible to find so I may go all gray

  • I am grey/white...i wont dye my hair anymore

  • Fabulous I need to embrace that grays her I come

  • I'm going to Google that and try it. Thank you ☺

  • Oh I just feel so dissappointed, shocked and at a loss for words . My boss said to me so now you are use to it good. And hr said thank goodness I came back after only taking two weeks when I was first dx struggling with severe joint pain breathing issues and intermittent fevers. Or I would have been let go people just do not get it. Even my family they just do not understand the fatigue my niece said you are just getting old we all struggle with being tired.

  • Hi btvoicu I totally understand how you feel.. PeoplePeople just don't get it!l it's so frustrating especially when you try to explain how you are feeling. Because you don't look Ill people think you are exaggerating!!

  • Hi Tre123,

    I'm sorry to hear that you are struggling with your hair loss at the moment. Do you have any idea whether your hair loss is a symptom of your lupus, or whether it could be a side-effect of one of your medications?

    We have a Factsheet called, 'LUPUS: The Skin and Hair' which may be of interest to you. You can download a copy at lupusuk.org.uk/publications/

  • Thank you Paul I'm not sure but I think it's a combination of the two as I was getting thinning before I was diagnosed but obviously didn't know what was causing it I even went to a hair loss clinic and they thought it was due to traction alopecia and gave me minoxidil but it had no effect then I found out later on that I had lupus. However I was on planquil and I believe that has caused a lot of the thinning also. My rheumatology doc has jus changed my meds to azathioprine which he says is not so bad on the hair but I read in the side effects that it can also cause hair loss,! I'm really upset as there doesn't seem to be any medication for lupus that doesn't affect your hair. I know lupus causes hair loss so that's a cross we have to bear but the meds that are supposed to help us are doing the same thing! Thank you for your response I will download the fact sheet and have a look. Thanks once again

  • Hopefully in your case it will help with the hair loss, rather than contributing to it. You need to bear in mind that the drug manufacturers are required to list any possible side effects, regardless of how common they are. Hopefully hair loss is a rare side effect from that treatment that you will not experience. Let us know how you get on with the new treatment.

  • Thank you Paul I will let you know how I get on with new treat. I love this site as there's someone to answer your queries. ☺

  • Hu and fully understand how hair loss can make you feel. I had thick wavy long hair exactly like Darryl in splash the mermaid movie and then blam lost loads. Really upset me but have learnt it's just another damn thing to deal with. It has grown back mostly but nowhere near as thick and is just past shoulder length .It always thins more on one side of head but as I keep it longish to flip over thin patches. I list less through cancer treatment than the lupus! I have found nothing really stops it when in a flare but not stressing and reminding myself it will grow back. I don't lose as much now and am on hydroxy and azathioprene and make sure iron levels are kept at optimum as told when anaemia kicks in the hair makes a web on the carpet.

    Try not to stress too much as that will make it worse. Buy a new top or different make up to distract yourself and others away from your hair and look after yourself and give the meds a chance to calm the Lupus down a bit then hopefully you should see an improvement in hair soon.

    Wishing you all the best x

  • Than you littleelfie your words of encouragement are lovely. I will keep you updated ☺

  • Really worth checking your ferritin levels (blood protein iron levels). You need them above 40 to stop your hair dropping out and above 70 for it to grow back in. If it's low will make hair loss worse whatever the cause. Since taking ferrous sulphate for past few months mine is growing back in. And have felt a lot better - more energy and fewer headaches. Takes about 6 months after achieving better ferritin levels for hair to be maximally improved.

  • Hi Asarahjohnson that's brilliant that this has worked for you I will definately be asking my doctor to check my ferritin levels. What supplement are you currently taking?

  • For the ferritin issue. I'm on ferrous sulphate

  • Tre...i also put sesame oil on my entire head almost every day. Natural anti inflammatory. Takes my itch away...smaller scabs...in fact, the scab i had got really small. I switch off with cocounut oil sometimes. It wont help hair grow back, but it stopped my crazy itchiness.

  • That's good at least you got some relief from that! I don't actually have any scabs so that's a good thing I suppose ☺?

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