Where and what is your hair loss like?

[roseissick]

Hi all! Recently been diagnosed with Lupus after years of being dismissed so it's been a journey!

One symptom I have is hair loss, however because I also have hormonal issues they aren't sure if it's PCOS (but no cysts/high testosterone)

I have hair loss on my head, diffusely, it's fine, brittle and getting weaker and there are some patchy areas where the hair loss is more obvious. I can also pull the hair off my legs in some places as it's weaker there. No hair loss on eyelashes or eyebrows though.

Please let me know- Where do you have hair loss and what's yours like?

Thanks!

Nia

[Suvi8901]

Sorry to hear but if one’s got autoimmune alopecia then it’s a case of one’s own immune system cells and autoantibodies killing/destroying the very hair follicles that produce healthy hair. I’ve got this condition and have now fully accepted it but sometimes in lupus it can grow back. I once shaved the whole lot off, wore a wig for while but fortunately it’s grown back but when I’m stressed it starts to fall out again. I also produce lots of dry dead skin on the soles of my feet and face which again is quite common in lupus. Hence the need for moisturizer. Dermatonics is useful for feet.

[roseissick in reply to Suvi8901]

Thank you so much for your reply! I've actually recently cut it into a pixie kinda style cause it's just way too weak.

[BK47 in reply to Suvi8901]

That’s really interesting as I have dry scaly patches on my face that really get me down. One in particular is really painful if I accidentally catch it. Didn’t know it was related to lupus!

[Hamptons]

Mine is from the scalp, can pull clumps when brushing. Always had it but it’s worsening probably due to long Covid and pre menopause. Trying hairburst gummies from Holland n barrett, collagen. Trying to wash hair differently and not brush from top. My parting is widening. Between that and my teeth cracking I am feeling sexy

[roseissick in reply to Hamptons]

I'll look into those gummies for sure. Thank you! Honestly brushing my hair is a risk cause like you my weak hair just breaks. Me too, with my hair loss and dry cracked skin and mouth and rashes. V.sexy.

[Bobbydoodle]

Hi

It’s not easy losing hair is it. I have been taking Hairburst Gummies for just over 3 months and it has dramatically reduced the amount of hair that falls out! I’m surprised how well it’s worked. Obviously 3 months isn’t long enough for me to assess how well it grows back or if the quality of my hair will improve but as I lose so much less hair I intend to continue and hope the quality will improve as my hair is quite weak I have noticed now.

Not sure if it’s Lupus or my APS that has caused the change in my hair or if it’s the medication (Hydroxychloroquine and Warfarin) but could be hormones too I guess (I’m on HRT patches). Who knows but I’m happy the vitamins have reduced the hair fall as it was alarming how much was falling out.

Good luck

[roseissick in reply to Bobbydoodle]

That's interesting! I'm actually on HRT patches now. I'm 24 but they found my estrogen level was low and I have osteopenia. (I have had period issues for a while but they don't know why. They thought maybe pcos but it doesn't seem to fit). For me I feel like my HRT made my Lupus flare more! - I've read that estrogen can trigger it etc so it's a no win situation! HRT hasn't helped my hair loss which makes me thing it's not hormonal but honestly it's hard to tell. Thanks for the gummy advice! Hope your hair loss continues to improve

[KnitSewPurl]

I am bald at my pubic area but as for hair loss extreme loss is notice during really bad flares like one I had on Sun just gone it looked like I lost half my hair of my head. then the pain was extremely painful after that through out the day . I am still quite tired taking it slow this week. At least the pain has eased off substantially compared to Sunday just glad I was just about able to get to church and back with my family.

it should settle down your hair loss but will not disappear totally . you will find some days less and some days more . try not to get too stressed out about it . I know it is difficult but just try to accept it is part of your condition.

[roseissick in reply to KnitSewPurl]

Thank you so much for your kind words. I really feel you with the fatigue. Whenever I go anywhere outside for a few hours I feel like I have the worst flu the next few days and my body has been hit by a bus. 100 times worse in the sun I try to avoid it at all costs. I had no idea why for years I felt so bad after being in it but when I was diagnosed with lupus it made sense!

[sharon53]

I have bald patches on the my head l have no hair on my arms and my eybrow's have been affected to, l have been diagnosed with a type of alopecia l use a steriod type shampoo when needed but have been told it will never grow back. It is very thin l enquired about a wig on the NHS but have been told they are only for cancer patients.

[roseissick in reply to sharon53]

Thanks for replying. I also have super super thin hair (my mum said it felt like duck feathers/brittle) and I my hair used to be so so thick! My doc also asked if a shaved my legs ( I don't) because I actually don't have a normal amount of leg hair it's weird. It's really unfair that we/you aren't able to access a NHS wig because there are so many conditions that cause hair loss. I guess it's about looking into your own one but they are so pricey! I've also heard synthetic ones can be itchy

[BeeManShrop]

Hi NiasickSorry to hear you are loosing hair. My wife has had the same since being diagnosed with Lupus over 12 months ago. I can't help with the hair loss problem - sorry, but I (and my wife) would really recommend buying hair catchers or drain protectors to stop the hair going down the drain and blocking it up. We use an OXO one in the shower and a cheap stainless steel one in the bath (about £3) they both work really well. Hope this helps.

PS After 12 months on Hydroxy her hair is growing back again- there is hope.

[rocky2007]

Yes, it is awful, my hair has receded quite badly at the sides and my forehead. But worse than that for me is, I have lost all my eyebrows, I have none at all and feel very embarrassed to go out, I try to use a brow powder or pencil, but it looks ridiculous as I cannot apply it correctly.

[Lily77]

Hi Niasick, yes I had hair loss following my top two percentile severe flare. It is very distressing. I have found that Biotin has really helped my hair grow back, now fuller than before. I take double the daily recommended dose at 24,000 mcg. I use a brand called Evo Nutrition which is available online in the UK and are small tablets...easy to take!

[Sashappy]

I've had hair loss for years. I have thyroid, lupus and severe stress from health issues. Sometimes it's in my food it's that bad. I have no obvious bald patches but there are weeks when my hair is brittle and dry and falls out more. Thyroid has alot to do with it but my bloods come back fine. I believe it's a combination of everything. I hope you find an answer to your hair loss problem x

[Marva91]

Wow I also have bad hair loss it is beeb shedding and breaking for more than 7 years. I have no idea what to do too. My hair looks like I don't take care of it.