Hair - A bit shallow, I know. What can I do? - LUPUS UK

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Hair - A bit shallow, I know. What can I do?

dotty2203 profile image
6 Replies

I'm having problems with my hair. I lost a very large patch last year, and although it is growing back quickly, it is growing back almost jet black. I am losing other patched of hair, but much less severely. It's going in my hairline at the front and has thinned significantly at the back. I usually have very long, very very thick and course dyed blonde hair, I am naturally a dark blone. My hairdresser (who is a hair loss specialist) said not to put dye on my scalp as it could make the hair loss worse, so for my sister's wedding in September I had foils done which cost £100 with a cut. I don't have the time (5 hours) or the money to have this done again, but my rrots are now terrible and the patch growing back is getting very obvious, even though I wear my hair up all the time. I feel terrible for feeling bad about this, but it is starting to really get me down. I am seeing my Rhuematologist who thinks I have a Connective Tissue issue most likely Lupus, but is reluctant to give me a diagnosis as my bloods are fairly unremarkable. I am also struggling with awful pain and fatigue which really doesn't help with my low mood. Any ideas? The steroid injection I had only lasted two weeks, so I am feeling pretty grotty and just thought dealing with the smallest problem might make me feel better?

Thanks

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Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi dotty2203 ,

We have an article about hair loss in lupus on our blog which may be of interest to you; lupusuk.org.uk/coping-with-...

We also have an article about managing fatigue at lupusuk.org.uk/managing-fat...

If you want more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

happytulip profile image
happytulip

Hi there, I was having major hair loss issues and despite still being in the midst of an ongoing lupus flare since September I have had fantastic results by cooking up bone broth from marrow bones and drinking it. I'm really tired right now so won't go into it all but if you look at my previous posts I posted when I started drinking the broth. I was a major sceptic and I then posted a month later.

My hairdresser is also a hair loss specialist and has never seen such a transformation from such thin, lank hair to what now is a head of hair so thick that he doesn't quite know how to style it. Bone broth won't be for everyone but it's clearly doing something for me. Check it out on. My post history at least and see what you think?

Good luck!

soootired profile image
soootired in reply to happytulip

I remember reading your post about bone broth before and keep meaning to try it, it sounds relatively easy to do and certainly can't hurt! Could you buy a quantity of bones and freeze them? Also do they need to be marrow bones? 😊

soootired profile image
soootired

I'm in the same boat as you at present.

I have long curly hair and I have lost at least a third of it, only because of its texture does it not notice much to anyone but me. I've also lost about 80% of the hair on my body. I too don't have a proper lupus dx because of my bloods (I had a positive ana now neg) but I have been on hydroxy for 2 years and have just started aza on a trial - this took my rheumy a bit of convincing because of my bloods! I'm REALLY hoping it helps my hair loss, the only thing that slows it down is steroids when I take them short term for flares.

I how you get sorted soon. Make sure you mention it to your rheumy, maybe ask for a trial of hydroxy if you're not already on it?

It's not vanity, our hair is important to us!

Take care and let us know how you get on. Xxxx

dotty2203 profile image
dotty2203

Thank you for your replies. I'm in the same diagnosis boat as my bloods are all unremarkable but Dr is sure it is Lupus. I just feel in limbo and I suppose my hair opitimises how I'm feeling. The only treatment I've had so far is a stations knjection, which was amazing for two weeks then it slipped back to normal. I think I've been upset but the best I feel is three days before my period, which let's face it isn't a great feeling. I'm normally such a positive person, but I'm struggling to see a bright side here. I'm not sure I could use the bone broth method, I'm a fussy eater at best and don't really eat meat, but I will bear it jn mind x

amanda73 profile image
amanda73

I wear wigs or clip on extensions have done since early 20s clip on ponytails are cheap of eBay and hair extensions clip ons are easy enough too x Also the oil hair dye from the shops is very gentle xx it has no peroxide xx but still works it may take a few applications tho and i would recommend doing it every 4 weeks till you have the desired colour and only do yr roots xx and ends last 5mins only hope this helps . first time ever i have lovely long hair and mine all broke off at the top so its like a mullet arrgghhh i use hair grips to hide it too xx

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