Hair loss and breakage : Would love to hear from... - LUPUS UK

LUPUS UK

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Hair loss and breakage

suitcase1 profile image
18 Replies

Would love to hear from ppl if they got success over hair breakage and hair loss that goes with lupus .And any tips on what helps ?Mines has been going on 18mth just diagnosed lupus .Although I knew it was .But they just put in down to stress .Until ended up in hospital face and forehead swollen and basically out of my tree ..Thankfully one of the docs in hospital did the test and has come back positive so at least on meds to get a handle on it .Thank you all

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suitcase1
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18 Replies
DJK99 profile image
DJK99

hi there - what a journey for you eh? So sorry.

Well, on the hair front, I have to say mine just started falling out when under extreme stress, when all lupus etc symptoms popped up too.. although this was occurring in my twenties too I seem to remember... decades ago now (am 58!). My hair loss seemed to get better when put on methotrexate... but also when I stopped working in high stress/intensity job. It's still not great and hair falls out a lot day to day/clog up the drain every time but then I have a lot of hair, albeit not in great condition... It was for decades so it's very upsetting, I know. I wrote about having "candy floss hair" on here a couple years back and got a lot of "I hear ya!" responses.

In my early twenties, in very stressful advertising role, I didn't know what was wrong with me... and hadn't ever gone to docs since a baby with really severe skin, gums, bone, infections issues as my father was anti orthodox medicine..he just made diet super clean and nutritious, with lots of water and high quality vits/minerals. He also had a water filter put in at source so not so many nasties on my skin, and washed clothes, and in my tum. So when anything was wrong, up until about 20yrs ago when things stated to get a little hairy health-wise and I had to get clinical help, off I'd trot to a health food shop or do research on what else might help. That's when I started to do Hatha (Bikram) yoga every single day (at 21).. not only did my bod improve in how it looked(!!) my hair stopped falling out so much.

So these days I do the yoga in the best way I can (ie my inflammatory arthritis makes it rather difficult and impossible at first when I restarted doing it 1.5yrs ago, when so fed up, pretty much crying every morning in bed in pain... I restarted doing it every day... very slowly (wld have been hilarious to watch for first 3mths!!) - but if I don't do it I REALLY struggle, so have to keep doing it, even though it kills some days or is pretty impossible to do most of positions). This helps blood flow to head/hair roots and distresses hugely so I think helps reduce hair loss a little.

And, for me, as I have all my life, I take a lot of high dose, high quality vitamins/minerals/oils (EPO/EPA oils, B Complex, mag/cal/zinc, moderated release C etc and of course the high Vit D and folic acid on prescription). I also have a highly nutritious diet, with lots of oily fish, dark green/red/orange veg and fruit, wholegrains etc etc and drink 3 litres at least of water a day. I really do think this might help - in all ways!

Topically, I use Aveda Botanical Repair shampoo and deep conditioner each time, and wash with warm, not hot, water not too often ie every 5 days... but it's not really doing a huge amount (except reducing my bank account!) but is better than my previous Damage Remedy Aveda stuff. BUT - A friend on here also has all these probs and much much more - she uses Olaplex and her hair is amazing - she said it made a big difference. Cost for that is very high... but I might invest when the Aveda runs out... I've also installed something called HelloKlean - it's a water filter you screw on the taps - the water in my area is V V hard and full of limescale so I hope it will help. Here's the link... helloklean.co.uk/pages/how-...

Oh and try not to blow dry it... although I do.. with huge amounts of protection stuff

Hope that helps. I know how important it is to look in the mirror (and the plug hole) and see good things.

All the best, D x

suitcase1 profile image
suitcase1 in reply to DJK99

Hi Thank you so much for your reply .

I feel bad that you had it so young .

I couldn't imagine coping with all that and working .!

I am will be 60 soon .So need to park the vanity and get on and deal with it

The fact you said candyfloss hair is exactly what I would say .Very brittle broken ..

I was active until 10 wks ago although issues with scalp and body were getting worse .Then exhaustion kicked in .

The delay in treatment and a lot of mistakes haven't helped .

But I am where Iam..So time to get a handle on things .

Definitely all the things you suggested are great .

I was a walker gym and yoga person .

But my head and body hasn't been in the right space .Just the fact that no one believe me ..Has taken it out of me mentally. But will try to get more exercise when body let's me .

I was also using Olaplex. It did help last yr .So maybe time to get back on it .

The diet and supplement tips are really helpful. I have been on probiotics aswell and helps with the my tummy issues .

Thank you for your support

Best wishes

Miriam X

Jmiller623 profile image
Jmiller623

Plaquenil and vitamin D improved my hair and skin tremendously. My vit D levels were around 20 so I was low. I take 5000 IU daily to keep me around 40+. Also avoiding the sun helps as well. That’s about all that helped me. Some people use special shampoos and magic but I’ve found nothing really helps except controlling lupus.

suitcase1 profile image
suitcase1 in reply to Jmiller623

Thank you for reply That's great to hear Plaquenil helped I have been started on it .So 🤞 it has the same affect .I am definitely hoping once the treatment kicks in .I will hopefully see a difference .I too had good Vit D supplements.

sarahalice profile image
sarahalice

Hi. Watermans shampoo and conditioner.Castor oil hair treatment once a week

Hope this helps x

suitcase1 profile image
suitcase1 in reply to sarahalice

Thank you for your reply Sarah .I will look into that shampoo not heard of it before .

Best wishes Miriam X

sarahalice profile image
sarahalice in reply to suitcase1

Hi. It's specialist designed for reducing hairloss and it's leaves your hair lovely too. I tried another brand that leaft my hair like straw. Boots and amazon sell it and they have their own website.

X

suitcase1 profile image
suitcase1 in reply to sarahalice

Yes Think I must have spent around £1000 in products this last 18mths .But never had much success. So best taking advice from ppl that's had same problem .This is a great forum to get help and advice .X

sarahalice profile image
sarahalice in reply to suitcase1

Me too, I brought the aveda range which was a stupid price! Then the Dr Organics range which was such a waste of money. The watermans range is a great price compared to others and worked the best for me! Castor oil is a good price too, people suggest Jamaica black castor oil is best, but I've not tried that one yet

X

in reply to sarahalice

Hi i have the same problem with thinned haot and breakage. Watermans range did you just buy the shampoo? Did it stop the hair from falling ?

sarahalice profile image
sarahalice in reply to

Hi. I use the conditioner as well. I also do a castor oil treatment overnight once a week if a can, I use Frank Body coffee hair scrub and then the watermans shampoo and conditioner. Apparently it's important not to wash yr hair everyday. Its make a huge difference in reducing my hair and encouraging new growth. I hear that miro needling is good as well, but its looks a bit scary.

X

in reply to sarahalice

Is there a particular watermans shampoo or are they call the same?

I wash my ahir once a week maybe twice if its lucky lol

Also take biotin and have iron tablets.

Just need my hair to look thick again :-(

sarahalice profile image
sarahalice in reply to

They only sell 1 shampoo and 1 conditioner, I think they sell serums etc as well.

in reply to sarahalice

Ahh okay will give it ago. Thank you :-)

dg70 profile image
dg70

Caffeine shampoos. I've used alpecin every day for two years. It doesn't give you more hair but thickens a lot what you do have. Looks like i have 50% more hair than i did a couple of years ago. Takes months of use before you see the difference. I have many friends who regularly use wigs who dont have lupus and I've been told amazon has a good selection now. Washable, colourable so they've come on a lot in the last few years. I wouldn't rule it out if i lost more hair myself.

suitcase1 profile image
suitcase1 in reply to dg70

Thank you for your reply I have saw this on telly and wondered if it did work .So good to know it helps you

Best wishes

Miriam X

PrincessPearl profile image
PrincessPearl

Poor you - I know how distressing it can be. Mine fell out when I tried to lower my hydroxychloroquine dosage. Vitamin D (high dosage) as mentioned by others plus hairburst jelly supplements that I brought off of amazon. These have been absolutely amazing - my older sister had some stress related bald patches and with a month the hair started to come back nicely. My hairdresser has given my Olaplex no 3 as a treatment which I use every week. My hair, which has always been very thick was basically back to normal 2/3 months later.

suitcase1 profile image
suitcase1 in reply to PrincessPearl

That is great to hear you have had success with Olaplex I used it last yr .But that was before any medication..So I will give it another go .I too also had really thick hair .until this .So I can cover the bald parts just now .Hopefully once the meds kick in that should help aswell

Best wishes Miriam X

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