Does Hydroxychloroquine make your hair fall out?

[skylark15]

I've noticed severe hair loss over the last few years and I'm wondering if it's the HCQ.

Has anyone got any ideas? Thank you.

[eekt]

So sorry to hear that skylark, it's very distressing....HCQ not only made my hair fall out, it bleached it too, one of the rarer side effects, before a full adverse reaction (overall skin rash spreading for days after stopping plus palpitations)....the good news is that's grown back since stopping

I've a couple of small permanent bald patches and periods of moulting due to lupus

Hoping your hair is restored very soon, it's so very much part of our personality xxx

[skylark15 in reply to eekt]

Hi, eekt.

Thank you for your helpful reply. Gosh, those were very unpleasant side effects. I'm glad that your hair is mostly restored now. It's reassuring to hear that it grew back once you'd stopped HCQ. I stopped taking it only a few days ago and I haven't been able to speak to the rheumatologist yet.

I didn't know that lupus itself can cause periodic 'moulting'. I've been aware of losing lots of hairs all the time and especially when I wash my hair but it's literally coming out in handfuls, now. My hairbrush gets clogged up with hair. You're bang on when you say that hair forms an important part of our personality-and not through vanity. I'll message my rheumatology consultant and I'll be seeing the rheum speciality nurse in 3 weeks. All best wishes for a better New Year than the last two although I'm not holding my breath.

Tess x

[daisyd]

My hair got really thin, my blood test showed that I was low in iron stores and folic acid (iron stores is a different test from the anaemia one)

I am still on hydroxychloroquine and my hair is now really thick, don’t know if it will work on everyone but might be with having a blood test

Good luck

[MrsMarigold]

Hi skylark. I have read that for many lupus patients hair loss is one of the very first clinical symptoms of the disease. And common. Per my Rheumatologist. I used to have a huge head full of wavy white hair. Now after so many years of grief about it, I’ve since learned that the hair pieces made for people like us are absolutely fantastic. And I’m totally ok with it. When I “wear” hair no one knows. But, we all have to get to that acceptance in our own time. I developed what is commonly called “ lupus hair.” I lost much around hairline and most all my hair is very kinky and dry. That is typical lupus hair. I’m so blessed lol. I take 400 mg. Hydroxy for 2 years. I’m not losing hair from it. It helps the inflammation of my scalp so I think I keep more. Some days just to make my family laugh I send pictures of myself after a shower as it is kinky and sticks right out. 😀😳 whatever happens it will be okay!

[skylark15 in reply to MrsMarigold]

Dear Titters,

Thanks for your reply to my question. I'd never heard of 'lupus hair'. It'll take a while for me to adjust to what's going on and be ok with it. Ironically, I've always said that if I had to have chemo, that I'd be quite happy not to have any hair but be bald-headed. Suddenly, I find that I'm really anxious about the idea. It's another thing to mention to my GP tomorrow .

Thank you, though for your uplifting message and best wishes for a better New Year than the last couple of years have been.

Tess x

[Jadelee28 in reply to MrsMarigold]

Hello

Where should I start to look for hair pieces?

[MrsMarigold in reply to Jadelee28]

Hi Jadelee. Are you in UK? My sources would be in the US where I live. Howevera Very good, informative website for hair loss in women is “Women’s Hairloss Project.” Years ago before anyone was regularly on Facebook I learned a lot. I’m not on social media but I think if you are you will get a boat load of information. The site is still good even without availability to social media. If you are in US perhaps message me and I can guide you a bit.

[Jadelee28 in reply to MrsMarigold]

Thank you, based in UK but will have alook

[debsgm]

Anything can happen with lupus!😢

4 years ago I was diagnosed with autoimmune alopecia by my dermatologist which developed after DLE and SCLE.

I was put on HCQ for dreadful DLE and SCLE which certainly helped with the all over body red rashes. 😢

Dermo said it wasn’t the HCQ but actual lupus autoimmune causation ie hair follicles on the scalp being weakened and attacked by T lymphocytes. It was so bad I had it shaved off.

Now it’s grown back but I still get weak, whitened hairs in places on my scalp with lots of flaky facial skin plus a bit of Prednisolone induced hairiness on my lips but I shave it off. Nothing like what it was 4 years ago.

Many side effects with HCQ but hair loss is not listed here:

webmd.com/drugs/2/drug-5482...

webmd.com/drugs/2/drug-5482...

Reasonably thick hair now taking HCQ 200mg/day.

[eekt in reply to debsgm]

Hi debsgm, There are many, many more side effects on the FDA's website, more than in the info leaflet in the pack too - I looked there because of the range of side effects I had not listed!

drugs.com/sfx/hydroxychloro...

Hair loss or thinning of hair is listed, along with the bizarre bleaching of hair I had (noted as uncommon!...one day I'll have a common-or-garden problem!)

Happy new year! xxx

[debsgm in reply to eekt]

Hi eekt,

Yes EEKS!😢😱

Perhaps it should be YIKES!

Thanks for the link.

Some 60 plus side effects listed as bullet points for HCQ but I can’t find the one for hair loss?🤷

Scary stuff indeed so I’m taking my prescribed HCQ dosage every other day now which is effectively 1/2 the dosage for this anti-malarial as I seem to be in lupus acquiescence at the moment 🤷🏽‍♀️.

Wondering whether it was the 3000mg/day MMF which caused my alopecia at the time but now down to 2G/day.

[eekt in reply to debsgm]

Hi debsgm

Hair loss is under 'Side effects not requiring immediate medical attention' about a third the way down

There are a lot of side effects but most folks seem to have no problems with HCQ...beware of reducing it because it's prescribed as a prophylactic and does seem to protect the heart (except if it causes the heart problems that were all over the news after Trump took it for Covid! )....there are just a couple of folks on the forum who had a similar reaction to me ie it's rare!

Be safe, be well xxx

[skylark15 in reply to debsgm]

Dear debsgm,

Soooo true: anything can (and does) happen with lupus! Thanks for the info passed on from your dermatologist. Lupus autoimmune causation of the hair falling out, and the role of T-lymphocytes. Those aren't called killer T cells for nothing, huh?

Tess x

[Bobbydoodle]

I have APS and Lupus SLE and I take warfarin, hydroxychloroquine and prescribed vitamin D.

Everytime I washed my hair I would literally have a birds nest of hair that fell out. And the family would all complain they’d find my hairs everywhere round the house it came out so much.

I started taking Hairburst chewable vitamins daily about a month ago and the first thing I have noticed is that I’m hardly losing hair when I wash it! The information states to take for 3 months before you see the benefits but honestly I can already see I’m not losing hardly any hair so that’s positive enough for me to continue and see if my hair thickens up around my hairline and if it improves the quality of new hair growth too.

[Lizard28 in reply to Bobbydoodle]

That’s great info, I’m going to give them a try, my hair is also very thin, I had chemo over two years ago but my hair came back very wavy and I loved it but back on hydroxy and it’s gone thin again. I use lee Stafford hair growth shampoos and will give anything a try to get it to stop getting thinner.

[Hamptons]

I have just been on Holland n Barrett website, the hairburst chewables are in the Penny sale so you get two packs for £20.00 AND there is 20% if you use the code SAVINGS so you you two packs for £18.00. Going to give them a try.

[Tiras]

Hello! I have had hair loss also, the hair on my head is thinning and getting finer. However, the most significant hair loss, is I have absolutely no body hair shoulders down, no underarm hair , no leg hair, and yes no hair even the the private areas. It just doesn’t grow anymore. I was diagnosed with lupus 10 to 12 years ago, and the hair just slowly stopped growing, and when it came out it never grew back. My underarm hair & pubic hair got what looked like a fungus, would just literally break off, came out and never came back. Dermatologist said it was not a fungus, it was the hair dying. So yes, I know exactly what you are going through. Wishing you the best!😊❤️

[skylark15 in reply to Tiras]

Dear Tiras,

Thank you so much for your sympathetic message. I feel for you because even though we may grumble about leg and underarm hair (well, I did, anyway !), it must feel very odd to have reverted to the body of a pre-pubescent girl. Did your rheumy give any specific reason why all your body hair died off? Was it an 'autoimmune lupus' thing?

I hope you have rather more cheerful weather than we have at the moment: it's warmed up a bit but is drizzling and grey. All best wishes,

Tess x

[Alfie8 in reply to skylark15]

How can it be dying doing the harm when obviously you do not dye your personal hair.

[Tiras]

Unfortunately I am a male and it is embarrassing to go to doctors, have procedures, or anything else where one might be totally exposed and no hair. However, it is what it is. My wife is jealous, because she has to shave! She says she wished she didn’t have any hair! 😂😂😂Weather here is not bad.

Hoping for the best for all of us!

[skylark15 in reply to Tiras]

Oh, Tiras! I'm embarrassed myself, now because I actually put '...child', rather than girl to begin with and then changed it. I shouldn't have made such an assumption and I apologise. Thank you for being so grown up & courteous in your response 😌. I'm glad you have reasonable weather; we're in the South West and weather fronts usually roll in from the Atlantic and affect us first.

Tess

[Tiras]

Don’t be embarrassed, it is normal to assume females with lupus. 9 out of 10 people with lupus are females. So absolutely nothing to be embarrassed about. Honestly I didn’t think anything about it. ❤️

[Tiras]

Oh, I’m in Alabama.

[skylark15 in reply to Tiras]

Wonderful! Roll on, eighteen wheeler...🤣.