Lupus and hair loss/thinning : Hey Guys My hair... - LUPUS UK

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Lupus and hair loss/thinning

NicolaKidd profile image
NicolaKidd

Hey Guys

My hair started to think back in January this year, no legions though.

I started taking Hydroxychloroquine Back in March but do far it’s not helped.

Anyone had any luck with stopping or reversing the hair loss?

I’m finding this quite stressful atm.

Thanks in advance

Nicky

14 Replies
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Hi,

This downloadable factsheet/leaflet “Lupus: hair and skin” may help clarify matters:

lupusuk.org.uk/wp-content/u...

as a Trichologist i see a lot of patients with hair loss related to Lupus - or sometimes the medication prescribed. If your loss is a general 'thinning' - this should improve once the progress of the disease is under control - topical treatments applied directly to the scalp can assist healthy regrowth. ('Discoid Lupus ' hair loss is another matter)

NicolaKidd profile image
NicolaKidd in reply to N314

It’s general thinning but I’m starting to get patches where the hair is so thin it looks bold.

My head tingles then the hair comes out with the follicle still attached

Wendy39 profile image
Wendy39 in reply to NicolaKidd

I forgot to say that I get a crawling sensation in my head when my hair is thinning. I thought I had nits for months. I had 3 young children at the time and I was also working as a TA, so paranoid about nits. I would use a nit comb every night, thinking the crawling was nots but never found anything! it was sending me mad!

N314 profile image
N314 in reply to NicolaKidd

General (diffuse) thinning is the 'norm' with Lupus - you need to have your scalp examined through high magnification (trichoscopy) to see the real 'picture'... regrowth is often the case once treatment brings the SLE under control.

i suspect what your seeing attached to the hair is the hair bulb (rather than a follicle) - it should be in the 'telogen' phase, if this is the case - we might then conclude you are having an episode of 'telogen effluvium' (this needs confirmation by a trichologist examination)

people often report tingling/crawling/tender sensations.

NicolaKidd profile image
NicolaKidd in reply to N314

Thank you for the information you have provided.

Hello NicolaKidd

You've had two good responses so far.

Check out the lupus leaflet on lupus and hair and skin. The website has lots more information on symptoms, take a look at the publications section. There are also books for sale on the website.

I have experienced hair thinning and very small patches of hair loss, and still do at times.

When my GP first ordered bloods as she thought I might have lupus, she asked me if I had noticed any hair loss. I replied no. A week later I was showering and couldn't understand why the water wasn't draining away, but then realised that the plug hole was blocked - with my hair. It was quite scary as so much hair came out in one shower. I went through a period thinking it would all fall out. Unfortunately stress is a trigger for lupus, so the more we worry about these things, the worse they get.

I have been very fortunate that I have fairly thick hair and quite a lot of it, so have been able to hide the problem. But I know others with lupus whose hair loss is much more drastic and they cannot hide it.

Mine definitely is worse with flares and sun exposure - I'm anti-RO positive and very photo sensitive.

The little patches of hair loss, a little bigger than a 5p piece seem to be sun exposure. They can happen anywhere on my scalp.

Either side of my forehead it has thinned and this is visible when I wear my hair back in a ponytail. Otherwise no one would notice.

I was told by my Rheumy to wear a hat every time I go outside but I still get patches if flaring.

I have a large lupus rash at the nap of my neck, that is slowly getting smaller with medication - but it's been there for around 8/9 years. First dermy I saw totally dismissed it. Much later a another dermy biopsied it and it was active lupus. So I haven't been able to dye my hair for that long, as it gets sore and I don't want to make it worse. So I am blonde going grey and my sister tells me I have some white too - as only sisters can.

Another dermy told me that some of my hair follicles were damaged and the hair would not grow back where that has happened. So this explains places where I still have thinning. But like I say, I think I am aware of this but others don't seem to see it.

So, mine with medication, wearing a hat and not dying my hair any longer, has helped.

The reply that says this will improve when your lupus is under control is right. I don't think there are any magic shampoos or creams that will stop this. It is a systemic illness and your skin and hair improve when the lupus is controlled. So I wouldn't spend money on "magic cures".

I would keep an eye on this hair loss and check your scalp. If it gets worse tell your doctor. Keep a diary of symptoms. Note if the hydroxychloroquine helps or is taking a while to kick in. For me hydroxy took about 12 months before I thought it was helping, a lot longer than it should have and in hindsight I needed more medication to suppress my symptoms earlier on, but hindsight is a wonderful thing. Take photos of any patches. Photos are great. No doctor can dismiss a photo.

Do you have a dermatologist?

Hope this has helped.

Best wishes

Wendy

NicolaKidd profile image
NicolaKidd in reply to Wendy39

Thank you for the reply

Yes I do have a dermatologist. She is aware and advised I take hair supplements and use regain for women but it’s not helping improve the situation,

My job done would say is stressful and I can feel my scalp tingling when I’m stressed and which point the hair falls out with the folic attached.

Guess. Need see if hydrox starts working

Wendy39 profile image
Wendy39 in reply to NicolaKidd

I'm pleased you have a dermatologist who is aware of your hair loss. But like I and other say, there are no magic shampoos etc. You just need to get your lupus control.

Lots of luck and I hope that the hydroxy works for you soon.

Wendy

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Hidden in reply to NicolaKidd

Hi there,

My hair does that.

It’s properly called autoimmune alopecia whereby the the T lymphocytes, antibodies or white blood cells? are actually attacking the hair follicles which grow the hair. Hence the hair grows back weak, thin and brittle with a lot of dry, flaky bits of skin on the scalp and elsewhere.

But the immunosuppressants, steroids and HCQ all help in some way to calm the scalp down👍. It does. take time for the hair to grow back.

Dear NicolaKidd

Please remember vit D .

Have this checked , most people with lupus , if not all are very low in vit D .

My hair had become so rough , thinning and braking , now that I have been taking prescribed vit D over a few years my hair is quite healthy . It takes a few months to notice the difference .

Hope this helps

🦋❤️

Thank you for that information

Dear NicolaKidd, hair loss is part of lupus. We had a major problem in the past and during the lockdown. Chunks of hair fell all over the floors, bathroom. Clear indication of disease activity. But Hydroxychloroquine helped. Massively... also we started putting castor oil/coconut oil on our hair once a week just to massage to our scalp. We Improved out health, started to rest more, sleep more, eat well and it is on and off now... much better than before.. hope you feel better. We know it is upsetting. But if you just focus and be patient, it gets better. But just eat well as well as rest well. Stay away from stress. Lots of love, Lale x

Hi. I have discoid lupus and have bald areas on my head together with hair loss, I started taking hydroxychorloquin in March and the hair loss has much improved but the bald areas will never grow as the scalp is scarred I am told. I use Nioxin treatment Shampoo/Conditioner now and my scalp and hair feels healthier for it. My rashes and lesions are much improved on my skin since being on the medication. Hope this helps.

Regards

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