Anyone suffered hairloss

[smeackles]

Has anyone suffered patches of hair loss?

If so has it grown back?

[Barbara17]

Yes, I’m sorry to say. My hair has receded by about 4 inches and I now have a wig. The last bad flare took more hair off the back of my head. I am waiting to be seen at a lupus clinic. As I was under dermatology who said they couldn’t do anything. I’m still hoping for some regrowth.

[smeackles in reply to Barbara17]

I’m so sorry to hear this - when you say a lupus clinic, is that with rheumatology?

[Barbara17 in reply to smeackles]

Yes. It’s a specific clinic within the department.

[Spandau]

unfortunately I lost all my hair 12 years ago and it hasn’t grown back but that isn’t the case for everyone. It might be worth having your iron levels checked if you haven’t already.

I hope yours is only temporary and it grows back soon 🤞🏻🤞🏻🤞🏻

[smeackles in reply to Spandau]

Thank you - it’s for my 24 year old daughter diagnosed earlier this year. This is the latest symptom that’s hit, and it’s scaring us. Already damaged skin on her face, now this - given its lupus, I can only imagine it must be damaging the hair follicles and is permanent, it’s lupus it doesn’t go gently - it damages cells and tissues and isn’t kind.

I understand they go softly softly with medication, working from gentlest upwards over time. But that’s allowing this permanent damage as it’s never yet been under control or subsided.

I was praying I’d hear that it wasn’t permanent for many, if I’m honest for her. But it just seems one hit after another with this disease. Wishing I could take it from her.

[Florence91 in reply to smeackles]

Sending you both love and support as it as a hard thing to deal with. I never use much makeup, but played around more with eye shadow to make myself feel better at the time.

If the hair follicles are damaged then sadly it wont grow back. I had hair thinning and some bald patches about 25 years ago. Dermatology did biopsy and it showed inflammation, grew back for a while, and then when I became unwell again after a trip to altitude (no diagnosis of SLE at that point & UV), the second dermatologist was useless. Eventually the rheumatologist who diagnosed my lupus apologised and said if I had got to him sooner, I might not have lost my hair. I was put on various meds then to stop the inflammation - my scalp was flaming red!

I have had wigs now for over 20 years. I found a good wigmaker, but now buy on the internet and get my local hairdresser to trim it to my liking! Done in fear and trembling the first time, but it works for me. Your daughter will adjust, but it takes time.

[Spandau]

please don’t be too disheartened and remember for the majority it is temporary and does grow back.

[smeackles in reply to Spandau]

Thank you - I’m not the suffering like all of you, I’m watching my loved one and it’s crippling me, so I’m in awe of how you all cope and adjust. It can be very cruel.

[FandNnan]

I'm so sorry you have hair loss. Physically it's a minor problem but psychologically it's hard to deal with. However, it may grow back.

My experience is that around 20 years ago I had an area of hair roughly 4 cms diameter that suddenly lost all hair. I didn't even realise as it was at the back of my head and it was a friend who noticed it. On that occasion it all grew back and it may have been a shock reaction to my father's death about 6 months before.

However, I'm now 71 and have significant hair loss on the front and top of my head that is not growing back. This time not sure why but my cocktail of medication or a current constant years long flare of Lupus is almost certainly the reason. Plus I'm now an "old lady" and many older women have hair loss as well as men.

I'm hoping you're in a situation where it is temporary. See your GP and ask for help as there is treatment available but I think it'll depend on the cause as to whether your hair regrows. Good luck.

[smeackles in reply to FandNnan]

It’s my daughter going through this, I’m just trying to help her navigate this.

Sounds similar, maybe a 2cm patch at back of her head I noticed yesterday she hadn’t realised. She had thick curly hair, it is noticeably thinner and has told rheumatology at last appointment and been given calcium. But the actual patch was something new. We go back in 2 weeks to next rheumatology appointment. But don’t want to leave it if she needs more meds now - read Finasteride / Dutasteride (avodart) can be used. Don’t think calcium stops lupus attacking hair follicles.

Shes 24 so it’s scary and as a mum, I want to help. X

[FandNnan]

Your daughter's lucky to have a mum like you supporting her 😊

[smeackles]

wishing I could take it from here x

[SurferGuy]

Hello Smeakles, so sorry to read this.

I've had Lupus for 16 years. In that time I had alopecia once. I didn't know I had it until I went to the barbers.

I like to change my hair styles constantly. At that time I had fairly long hair for some time and decided I wanted a number 3 on top and 1 back and sides. So the barber got the clippers and went for it. He was shocked at what he saw. And I was distraught.

I had several patches all over. And boy did they stand out. But the plus side to all of this is over the space of about 6 months, the patches totally disappeared, hair grew back as it was before, and this hasn't happened again since.

Unfortunately, over the last year I've notice my hair has though started to thin. I can see it fall out in the sink when I simply ruffle my hair. Simply a male problem of balding? I don't know. But to play it safe, I've gone from long hair to a buzz cut again to prevent damage causing more hair fall. I've also stopped all unnecessary hair products. I appreciate your daughter wouldn't want to go for my hair style, but maybe a shorter stylish cut might help.

I've also just last week bought Head and Shoulders dermo pro X saclp chair hair growth shampoo that states it helps thinning hair. In all honesty, I don't believe this kind of stuff works, but nothing to lose in trying.

Wishing your daughter the best.

[smeackles in reply to SurferGuy]

Thank you - it’s helpful to hear everyone’s own experiences and absolutely know everyone is different and bodies react differently and are affected in so many ways. But also helpful to hear the good with the bad and that there is a chance it’s not permanent.

Am taking note of all suggestions and ideas to consider anc look at.

Thank you for sharing and your best wishes - much appreciated

[Tykle]

I don't think it is the same for everyone, but I had a 10cm patch that went generally thin with two bald patches of about 3cm within that area.. I don't know if it was a lupus thing or not (GP couldn't find another cause) but it did start to grow back after a month or so and is now back to normal. Fingers crossed for your daughter while she waits to see what happens.

[smeackles in reply to Tykle]

Thank you - it’s helpful hearing from people of their experiences, the good with the bad. Know there is no way of knowing right now for my daughter if it’s gone for good or not, but hoping for a positive in all the symptoms. Fingers crossed, thank you

[Symone1]

Sorry to hear. I have had lupus for 20 years suffer from hair loss. Initially it is temporary but the regrowth hair becomes thinner with several larger bald spots over a period.

[Poshcards]

mine was really thick, but on Metho it went very thin and fine, extra folic acid stopped it going completely though. I still have hair but it is so fine x

[IMWilson]

Hello Smeaklies. I had a lot of hair loss when I was 23ish. It was a period of lupus flare. But perhaps 12/18 months later the hair did start to grow back. It grew back well and i have nice thick long hair. It was very upsetting at the time and I suppose it was a symptom of my general health. I think the dr prescribed Betnovate lotion tp put on the scalp. Don't know if that helped or just time. Good luck

[smeackles in reply to IMWilson]

My daughter has SLE and Discoid - I have read that discoid is where the follicles are damaged (and permanent is more likely). Just praying for a bit of regrowth for her and that they can medicate to slow/stop this damage. She did have betnovate for her skin on face, but didn't work and has something else now. But will see Dermo and Rheumatology in a few weeks. Thank you for sharing your experience - helps to hear some good positive alongside the rest. xx

[Lou7272]

Hi. I lost lots of hair at the start of my journey. I've added a photo where I have strategically placed strands to cover patches but it grew back when I started treatment thankfully .I'm sorry to hear your daughter is struggling through all of this, you too being her mum wishing you could take it away from her. Lucy xx

The beginning

[smeackles in reply to Lou7272]

Thank you Lucy for sharing - yes thats what she is doing covering the back at the moment. Need to hurry up and get to next rheumatology appointment next week (dermo the week after that). Praying they act and adjust meds with this new symptom & that some grows back. xxx