It’s only hair but...

[LLH76]

Hey, last year I noticed my hair started to change but as I work outside thought it could be the reason, in the last few months it’s got worse and I’m starting to think it could be lupus related (got lots of markers but not formally diagnosed-started hydroxy 2 months ago)

My crown is thinning out and going wirey and the hair at the back near my neck is all breaking off and knotting all the time.

I’ve tried using keratin but that doesn’t do anything other than try and smooth out the damage.

Just wandering what other people have ended up doing, seriously considering having to cut my hair short to get rid of the damage?!

[misty14]

Hi Llh

So sorry to read about your hair loss. I don't know if you know that it can be a sign of a flare and I'm just wondering if your due a follow up appt as you've been taking Hydroxy for two months.?. It can take up to 3 months to work!. Sorry too that your trying to get a diagnosis as you have lots of markers!. For this reason you should be monitored for changes. I wonder why your Rheumy isn't more definitive!. My lupus penfriend had similar hair problems to you and very bravely cut her hair off!. Few years later it's all growing back normally and slowly!. Not an easy decision for you to make. Hope I've helped a little and your better soon. X

[LLH76 in reply to misty14]

Hi, I’m due back to rheumy early next month so that will be the 3 months on hydroxy, I’ve got to have MRI’s and bloods done so it’s still early, I hadn’t heard of Lupus till 2 months ago and now I’m basically trying to build my own puzzle as to what is wrong and write it all down to help with a diagnosis, whatever that may be..

By markers I mean I’ve had the butterfly rash and Raynauds since teens and lots of the other ‘coincidences’ which I won’t bore everyone with, but now explain a lot of things?!

I’ve read hydroxy can help hair problems but also cause them so it’s confusing!

[misty14 in reply to LLH76]

Hi Llh

That's tough for you but you've certainly found the right site and your doing all the right things for your next Rheumy appt. glad it is soon and best of luck for it. Let us know how you get on. X

[Cas70]

Hello - I have Discoid Lupus and Sjogren's- my hair started changing like yours and no one would listen. Then I realised that the itchy scalp was really sore. By the time I got a Dermatologist to look at it I had Alopecia scarring which means it will never grow back. Luckily the bald patch can be disguised. Sorry to concern you but get some to look all over your scalp and take notice. I got my hairdresser to take photos on my phone - I felt my age was against me - so start fighting for help - it can also be a side effect of Hydroxy. Mine started 2 years before I was given the drug. Good luck and let us know how you do. Cas 70

[LLH76 in reply to Cas70]

Hi Cas70

I do get itchy scalp and sometimes sores in the same spot but always thought it was just because I have a sensitive scalp, then this thinning started and wirey texture, like could now stand my normally fine straight hair out at 90 degrees and scrub dishes (exaggeration) but it’s pretty bad!

It’s not going to recover as it is, my hairdresser said it was like ‘knicker elastic’ just stretches and snaps, should be least of my problems with joint pain, tiredness, sweats etc being more important to deal with but it’s getting me down and the stress of worrying about is probably making it worse!

[Cas70 in reply to LLH76]

Oh you poor thing - I do understand - it can be part of the autoimmune illness. I can only say find someone to take an interest in it - like a Dermatologist- they can offer you steroid injections in the worst spots - after you have used Betnovate etc. Do not scratch - it will get worse - I use Netrogena shampoo for itchy scalp. Did this start before the Hydroxychloroquine? Cas

[LLH76 in reply to Cas70]

Hi

Yes, it started last year and has just got worse, don’t know if the flare I think I’ve been going through has made it worse or the hydroxy.. but obviously wouldn’t even consider coming off hydroxy yet because it hasn’t had a chance to start really working yet, my night and morning sweats have calmed down and I’ve slept through the night a few times for the first time since I don’t know when and I’m sure it’s down to hydroxy so I think 2 months in I’m at the cusp of really seeing what it will do for me..

[Emily00 in reply to LLH76]

Hi, I've had lupus since I was at least 10 years old. I'm currently flaring for the first time in 15 years and my hair started changing quality (get thin, brittle and dry) and falling out - this is quite common for lupus and is even called " lupus hair".

My hair loss was unusually severe and I ended up losing almost all of it before the meds kicked in - it is was very upsetting for a while especially as it really makes you look very sick. but now it is growing back all over - but it doesn't sound like yours is this extreme.

I would suggest you push to see a dermatologist in case you get discoid lesions which they can give you steroid injections for. There is not a lot you can do but try and get the lupus under control, also I have heard fish oil can help too.

[Treetop33]

My hair has definitely got a lot more breakable in recent years and has periodic episodes of falling out. Sometimes my scalp feels quite sore. I'm lucky in that my hair was quite thick to start with and the shedding is even. Still, it's not exactly my crowing glory atm.

When I went to see the Lupus nurse recently she got me tested for iron and zinc deficiencies, which she said could cause hair loss too. I was deficient in both, so am now supplementing.

The hair loss and soreness also stops when I get the balance of meds right. So I'm on 7.5mg of Pred (going down slowly to 5mg) and 400mg of hydroxy (4 months in).

Stress can also cause hair loss too, apparently about 2-3 months after the event.

[Paul_Howard Partner LUPUS UK]

Hi LLH76 ,

We have a blog article about lupus and hair loss which has some tips about how to manage it. Hopefully you will find something helpful in it - lupusuk.org.uk/coping-with-...

[LLH76 in reply to Paul_Howard]

Hi Paul

Thank you, I shall have a look, best of luck for the weekend, think you should be lucky with the weather too!

Laura