Hair loss with lupus: Hi, I have been diagnosed... - LUPUS UK

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Hair loss with lupus

Ole_Vol profile image

Hi, I have been diagnosed with lupus nephritis this summer and started my treatment. Two months ago my hair starting rapidly falling out. I can’t stop it, I started developing bold patches. I have spoken to my rheumatologist but he didn’t seem concerned ir done anything about it. I am a 32 year old woman and just started a new job, my confidence is very shaken now. Is there anything that can help me with my hair loss at all? Any vitamins? Ir maybe I should run some tests?

9 Replies

Sorry to read your suffering from hair loss. I to have lost a high percentage of hair. Fortunately I had very thick hair to start with.

I’ve read that a referral to a dermatologist could potentially help.

I’ve just started using a product called nioxin, as mentioned in a blog I read about a women with lupus and hair loss.

I also learnt that you can adapt to styles that make the hair look thicker or cover bald patches . Most of my hair loss is at the front, so I always have a side parting that I let hang down my face rather than tie it up. I’ve also just recently started wearing my hair in a pony tail. I’m 37, but wearing my hair down is a no go as it highlights how thin it is. The pony tail gives an illusion of thicker hair.

If you have hair loss on top of your head, Try to disguise it by maybe styling with a little quif and Clip it, not sure how you spell that !!!!

Many medications can cause hair to fall out, so this is worth discussing with your gp. Rheumatologist may not be too concerned as their aim is more targeted at the disease .

I’ve read on here too coconut oil massaged I’m to the scalp.

I can’t offer you a cure , sorry. But it is about making it more manageable until you get it sorted.

X

eekt profile image
eekt in reply to Lisalou19

I had extremely thick hair and lost maybe 50% through diffuse alopecia, all over thinning...it used to take two hands to squeeze out the water, now it's just one...it has been growing back while still falling out 🙄 ...but I've just kept letting it growing so I can pile it up or tie it back.

I've been taking a double dose of multivitamins the past year...vitamin B12 is said to help hair growth, plus all the complex chain reactions of nutrients mean one deficiency eg zinc can mean B12 etc isn't absorbed....no idea if it has helped, but my hair has a new 'normal'...I no longer have a Janis Joplin hair look, more like Kate Moss on a bad day, since the baby dose of Hydroxy I take has been bleaching it from mouse brown...😁🤗🤭

Both my GP and Rheumy ignored my question about at what point I'd be eligible for a NHS wig - those facing chemotherapy for cancer are provided with one before treatment starts - and men just don't understand how devastating hair loss is for women...but I read a post by someone who bought a wig for £10 from Amazon (thank you!) and is delighted with it.

Remember, Jackie Kennedy always appeared in public in a wig! 👸 xxx

Lisalou19 profile image
Lisalou19 in reply to eekt

Regular trims always aids in thickening the air.

My hair does grow back, but in the mornings I look like one of those play dough heads, with all the spikes sticking out 😂 some of it doesn’t grow very long before it breaks or falls out again!!!

I’ve noticed some of the new hair is incredibly curly, at the front of my head. It looks as though these follicles are in a mind of there own!!!!

eekt profile image
eekt in reply to Lisalou19

That's a good tip! 💇‍♀️

My new hair is the same, last summer I looked like I was wearing a white candy floss toupe...😁 It was white, very brittle and extremely curly, so I started combing in a teeny bit henna cream that matched my colour, and it makes it smooth and glossy. 🧝‍♂️

I thought I was imagining a return of my natural pigment, but there's great post here: healthunlocked.com/pasoc/po...

with other folks finding benefit from B12.

So yes, Ole_Vol, ask your GP for the tests mentioned in that post, and if he/she's reluctant, emphasis it's a Quality of Life issue affecting your working ability! 💪💪💪

I've just remembered that my brother (who has Crohn's) had clumps falling out due to zinc deficiency.

Remember stress can cause hair loss too, so though it's very very hard, try not to stress about losing it 😣😗 xxx

Treetop33 profile image
Treetop33 in reply to Lisalou19

That's my experience. My fringe has gone haywire!

I had this for about two years and you might take hope in that I no longer get hair loss (touch wood). I am on Lupus meds (hydroxy and pred) and was tested for zinc and iron deficiency because that also causes hair loss (and I was found to be deficient).

Medics never seem to pay attention to quality of life issues, but hair loss is a really significant thing - it was the female Lupus nurse that took mine seriously and got me tested. But I think it really affects our sense of wellbeing. Good luck with sorting it out xx

eekt profile image
eekt in reply to Treetop33

That's just wonderful news! Thanks for sharing! 👱🏻‍♀️😁😗xxx

Hi Ole_Vol, I lost a lot of hair in a similar way before lupus was diagnosed. I did see a dermatologist and had scalp biopsies which showed inflammation then after a while most regrew. Some years later my scalp became seriously inflamed - red raw due to lupus- that was when I got a diagnosis and hair loss became permanent. This is not common, just bad luck!

So first round not so bad, 2nd round permanent. I have been on methotrexate for 10 years and stopped a year ago. It didnt make my hair grow but I grad felt better and my scalp has never been inflamed like that again. I have worn wigs for 15 years now. A very stupid dermatologist ref me for the wigs. My rheumatolist apologised for his colleague!! Said I might have had hair if I had seen him earlier. Anaemia also affects hair and thyroid probs so both should be checked.

Get an nhs ref for wigs and find a good wigmaker. You pay half and get 2 a year. If your hair regrows, you can ditch them. Nobody knows I have one unless I tell them and they look good, so you can be confident again. Hope this helps a little - takes time to get used to and perhaps your will grow again once the Mrs takes effect. Best wishes

Paul_Howard profile image
Paul_HowardAdministrator

Hi Ole_Vol,

We have an article on our website about hair loss in lupus which includes information and advice that you may find helpful. You can read it at lupusuk.org.uk/coping-with-...

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