Candy floss hair anyone??

[DJK99]

Hi all - was just wondering if it's a common symptom to have hair like candy floss... with SLE Lupus? That's the only way I can describe how it looks these days. I was on Hydroxycholoroquine for 6 mths 2yrs ago (came off that as made me v ill) and been on methotrexate for 5 months now. At least my hair has started to grow again as it totally seemed to stop for a year prior (plus all my eye lashes disappeared!) and it's getting a little bit thicker again since being on the metho... but frankly it looks in dreadful condition. my old hairdresser noted it was much thinner (this about 3yrs ago pre diagnosis with SLE this Feb) and it was quite depressing for me. I stopped having it dyed and am now pretty grey as 55 and post meopausal... It still falls out a lot but at least it's actually growing. I guess it's just a combination of the meds, SLE and being 55.. but I know loads of peeps my age and they don't have fluff for hair! Hey ho... Be good to hear any recommendations to help nurse it back to life - of should I just cut it off?! I use Aveda Damage Remedy stuff and eat a healthy diet etc.. and take Super Elixir which is pretty much the only thing that helps me get going in the morning/afternoon (depends on the day eh!). Thanks everso, Deb

[Serser]

Hi Deb,

I have frizzy hair some days. It doesn’t help having to wear a hat!! Nothing worse than hat hair-flat on top frizzy on the bottom!

I’m still losing mine, clupms fall out when I’m in the shower. I don’t think it’s noticeable but I can feel that my hair is much thinner than it used to be.

I’ve never dyed mine- due to laziness more than anything else!!

Xx

[Serser]

After all of that I forgot recommendations!

Coconut oil is good and it’s natural, so fingers crossed no nasty reactions! I find it gets rid of the frizz. You can also use coconut oil as a defrizz spray.

I used to have extremely short hair so I personally wouldn’t have any issues cutting it off. At the moment I have both sides of my head shaved due to ear operations I had 2 years ago (I had bandages on both sides-very painful to dress the ears if you have hair being pulled out all the time!). I’ve kept it short on the sides as I’m having a hearing aid put in too (also I know I don’t have the patience to let it grow out!!). I guess I’m used to almost having to have a less mainstream hair look!!

I think if you keep in mind that you rock just the way you are and almost learn to love your own quirky uniqueness that’s sets you apart from everyone else, you can’t go far wrong!

Xxxx

[DJK99 in reply to Serser]

Hey thanks so much Serser. Yes, fair to say I am feeling quite miserable today (and off and on generally) re the bit by bit deterioration due to everything (not loving the aging thang let alone the lupus)... and my hair was always rather good if I used enough products.. I used olive oil and that was quite good so I'll get me some of that cocont oil and see if it helps. Sorry to hear about everything going on for you.. brave lady xx

[sarahalice]

Hi!!

Candyfloss hair is one of my many lupus side conditions as well! I had lost about 30% of my hair. But luckily it fell out evenly. It's grown back thin, wild and candyfloss like. I use the same shampoo and conditioner as you and then frizzease but it only helps a little. I think one of the things that has happened is my hair use to be dead straight and the new hair that has grown back is curly.

If I wash it and don't brush it straight, I get lots of ringlets.

If you find a miracle hair product, please let us know!

All the best, Sarah x

[DJK99 in reply to sarahalice]

Thanks for your response Sarahalice... yes I went through the ringlets stage... I lked that.. now it's just a little sadder, sadly. Still, at least we have hair.. I'm grateful for that. x

[Paul_Howard Partner LUPUS UK]

Hi DJK99 ,

Hair loss and thinning is common in people with lupus. If you'd like more information about this and tips for managing it, please take a look at our article here - lupusuk.org.uk/coping-with-...

[DJK99 in reply to Paul_Howard]

Thank Paul - I'd had a look at it - all the advice sheets are great. thanks again!

[Bakbre]

Hi DJK99

Hi there

When my hair started falling out, I was told by my hairdresser to use bicarbonate of soda + coconut oil mixed to a paste, massage into hair and leave on for about an hour twice a week. (Use a shower cap to stop it going all over you, it also helps to make your head warm which helps the concoction go into the hair shaft). Then just wash your hair as normal - I just use shampoo after the treatment and use conditioner on other days.

It took about a month to work but I have to say that it has helped my hair enormously. Try it, you never know!

[Lupiknits]

My mother had patches of hair fall out. They grew in like white candy floss, then her normal colour thick hair grew back. I hope that gives you something to look forward to ! I have no idea why she had alopecia spots ( she lived in the middle of nowhere) and doubt she used anything special to help: this was 30 yrs ago.

[DJK99]

Hey all - just found this on Get the Gloss website:

getthegloss.com/news/revita...

Be great if we could get this sort of thing on prescription! x