Hairloss

[ButterflyEffect96]

My hair is starting to shed at a fast rate again. It was growing back thicker and fuller then just about a month ago it starting coming out in clumps. I have less than a quarter of my original hair from when I was first diagnosed and that was still after significant hair loss. It’s really getting to me now, I use a sulphate free shampoo, no heat and use castor oil alongside other oils to treat my hair and scalp. I know hair night seem very trivial compared to the other aspects of lupus but it is nice to sometimes pretend that I’m ‘well’ from the outside and I look very different to my normal self, just keeps reminding me that my life has turned upside down when I look in the mirror. I’m just wondering if anyone has any advice on what I could do, I really don’t want to resort to wearing a wig or scarf on my head.

[Dm02]

I struggle with this too so I really feel for you. While it may be considered a more ‘mild’ symptom it definitely is alarming & knocks your confidence. Doctors don’t really seem to worry about it either since it’s not life threatening. I haven’t really found much that helps however, my top tips would be Argan oil & a whole food diet. Sending you so much love 💜

[ButterflyEffect96 in reply to Dm02]

💜💜

[Lisalou19]

Hello there,

This is a major problem for me at the moment too. I had 4” cut off my hair the other day to try and encourage hair growth and a thicker look. The lady who did my hair suggested using baby shampoo as it has less chemicals and to follow with a sulphate free conditioner. I am yet to try this new routine. X

[ButterflyEffect96 in reply to Lisalou19]

I also did the same twice. Once in hospital and then my hair grew to my mid back but the fall out left a sort of mullet effect with very long layers then short ones so I cut it in a Bob last week for it to look a bit fuller. I will give baby shampoo a go, thanks x

[Lisalou19 in reply to ButterflyEffect96]

Ive noticed most of my hair loss is at the front of my hair line, so the hairdresser didn't touch the front. What is growing through has a mind of its own, its really curly new hair. Did you notice a fuller feel when you cut it into a bob? x

[ButterflyEffect96 in reply to Lisalou19]

My hairs naturally curly so looks fuller once dried after the Bob but if it gets wet or greasy a little it looks really sparse. Oddly the pred is making me more hairier everywhere else and my baby hairs have grown around my forehead quite a lot but I’m still losing so much hair 😭 x

[Lisalou19 in reply to ButterflyEffect96]

I’ve noticed my hair gets greasy quite quickly too, maybe because it’s got so thin! With all the new hair growing through I look like I’ve been electrocuted in the mornings. My hair was falling out before I started taking pred and it still continues since I stopped it!!!! I considered hair extensions but I don’t think my hair will hold them x

[ButterflyEffect96 in reply to Lisalou19]

I have crazy bed head too!!! 😂 Yeah extensions would cause more damage and I feel like it would make our fragile snap more. Guess we just have to be patient and look at the bigger picture x

[Paul_Howard Partner LUPUS UK]

Hi ButterflyEffect96 ,

We have an article about hair loss in lupus on our website which has lots of information and tips which you may find helpful - lupusuk.org.uk/coping-with-...

[mimiof9]

This is a source of contention for me too. I work in a cleanroom and have to "gown up". That means time spent on covering my bald spot(s) will most assuredly be revealed when pulling my hood off. Not to mention I work with a bunch of bully's. That too is a reason for hair loss. Only made worse with Lupus. But! I found a product I love for covering the "shiny" spots on my scalp. It's called Caboki. Check this product out here...caboki.com. Holler if you need any advice on this product. They have helpful videos too. Although I thought it was fairly explanatory. Btw, I purchased the little comb off the site. It helps in dispersing the product and making the hair look fuller. Sorry you're going through this. I totally understand. A women's hair is supposed to be her crowning glory. Some of us are challenged in this department.

[ButterflyEffect96 in reply to mimiof9]

That’s terrible! You should really escalate a complaint about the bullying, it’s cruel and out of order, I’m so sorry you have to go through that 😕. I will definitely check that out, thank you x

[Stacidavis1]

I agree, Caboki works wonders for covering especially for the front of your head. Also, a biotin supplement of 10,000mcg daily and using shampoo and conditioner from ArtNaturals (ArtNaturals.com) for thinning hair helps to bring in all those baby hairs with a vengence!

I also pulled my hair (what was left of it) back into a ponytail and was able to clip a false ponytail on to it without tugging on my hair. I bought it off of Amazon. Here is the link: amazon.com/dp/B01CJ6UU3Y/re...

It looks amazing, lasts a couple of months and I've never gotten so many compliments! And the best part is as long as you match your color, no one can tell it's not yours 😁👍.

I hope at least some of this helps. After cutting my hair 3 times, it's back to between my shoulder blades, so I know the above works.

Best of luck💕

[ButterflyEffect96 in reply to Stacidavis1]

Thank you for all your suggestions, I will get myself the biotin supplements and the shampoo 💜

[Stacidavis1 in reply to ButterflyEffect96]

Best of luck hon. Keep me posted on your progress 💕

[mimiof9]

You're certainly welcome! I learned something Stacidavis1 too! Thanks Stacidavis1!

[Jennifer251]

I experience hair loss an other side effects from lupus medications; luckily, some people recommended Biotin and Lupufree supplements to me. I also use Biotin shampoo to nourish my hair. Since taking them, I gradually see changes

[jopo280886]

Aww hi there, sorry to hear the distress this issue is causing you 😟 I’ve had much the same problem therefore understand how it effects you socially and emotionally! I started taking biotin tablets, high potent ones along with folic acid every morning with my pint of fresh squeezed lemon juice in warm water and they really do work - for me anyway, my hair is growing back in 🤞🏻It isn’t an overnight solver! You have to take for 4/6 months before you see a difference and I’m sure you will! I had extensions fitted, taped ones, just a few where it was really sparse and what a difference and they don’t damage your hair,my hairdresser uses an oil to remove them, re tape before reinserting them and I have hair again!

Good luck with all of the great advice 👍🏻 Take care and keep 😀 xxxx