Hair loss

[Susielouberry]

Hi everyone, as said in a previous post I have recently started losing my hair. I have just washed it and all this has come out, is this a lot or not? Have never lost this much before

Please excuse my feet lol xx

[willowwag]

I have the exact same problem, it comes out in handfuls when I wash it and I can see it falling out just with running water on it. It is very alarming when it happens isn't it. Even when I brush my hair is still comes out loads. I try not to wear any product in my hair apart from Lee stafford Cocco Loco hard oil in the tin. found this to be loving at taming my frizzy bit due to my hair coming out x

[Lupiknits in reply to willowwag]

That does look at lot in one go. I can't suggest any particular product, but do you have any particular time of year when you seem to "moult" ? Happens to me in autumn.

I don't know what meds you are on, but could be worth mentioning to your GP

[Susielouberry in reply to Lupiknits]

No I don't really moult to be honest I usually have a few strands come out everyday but this is another level completely.

I'm not on any meds at all yet as rheumatologist doesn't believe I'm having any other symptoms xx

[Susielouberry in reply to willowwag]

Thankyou Hun I don't wear any product on my hair at all. It is very upsetting 😭 xx

[happytulip]

I have similar amounts come out each day due to Lupus. When I was on Azathioprine the hair loss stopped and started to regrow, but then I had to stop that drug due to pancreatitis.

Hair loss is caused by either the Lupus attacking the hair follicles or the loss can be a side effect of the drugs. Are you on any meds? Methotrexate was the worst culprit for me.

Either way it's pants and makes you feel very upset. I am sorry this is happening to you.

My suggestion is to either take regular photos or (a bit gross) keep the lost hair in a bag and take it with you to your next appointment with Rheumatologist to show how serious it is. I did this when my specialist nurse wasn't really taking my hair loss seriously then I produced a bag of what I had lost in one month. My meds were then changed that very day! A picture paints a thousand words!

In the meantime protect yourself and scalp from any sun and treat yourself to a funky hat xx

[Susielouberry in reply to happytulip]

Hi Hun, I'm not on any meds at the minute as rheumatologist doesn't believe I'm having any other symptoms than blood results and pain in hands so won't prescribe me anything.

Thankyou for the suggestion I am definitely going to keep it in a bag now xxx

[Gailj]

I had the same problem 18 months ago, I started keeping the hair loss in a bag, showed my GP, she prescribed a cold tar treatment however, the loss continued until I had lost around 50% of my hair thickness and had developed bald patches, I took the hair to show my rheumatologist, I was then prescribed a steroid shampoo to use 2xweekly, plus the cold tar shampoo on other days, slowly over a 12 month period I regained my hair.

That's not going to help you right now but ask your Rheumy for a steroid shampoo.

Love Gail xx

[Susielouberry in reply to Gailj]

Thankyou Hun, deffo going to keep it now. My hair isn't very thick anyway so it's worrying me loads now.

Thankyou will deffo ask when I go next xxx

[Ieuann133]

Hi, I have had hair loss on and off for 20 years. I used to visit my gp, consultant andxtell them about it until I was almost in tears but their usual response was, well you still have lots...

No one understands the anguish of losing your hair...

I suggest the following as both have turned out to be causes.

Low ferritin - needs to be 90-100 for healthy hair, mind was 5

I started having iron infusions and the hair stopped falling out. My hair is now an indicator for when I need a top up and thankfully my haematologist listens!!

Thyroid levels... if you are hyper you can lose hair or if you are hypo and over medicated it can have the same result.

Obviously drugs such as methotrexate might not help but I don't think it was an issue for me when I was on mycophenalate mofitil or methotrexate. Can't vouch for azathioprin as my liver doesn't tolerate it

Good luck, I feel for you...

Margaret

[Susielouberry in reply to Ieuann133]

Thankyou Hun, I have more bloods being done next week so shall see what the results for those are, hopefully he listens to me this time xxx

[Lilrosie1]

Loll your feet are fine, yes lost alot of hair is very frustrating however the fiancée has Gotten me folic vitamins and all others as well as cbc oil I highly recommend it and has helped me alittle but I used it last year and had leveled my levels idk but folic is great and has seem to help. Included is B vitamins calcuim and multi

[Susielouberry in reply to Lilrosie1]

Oh brilliant thankyou I shall have a look into that too xxx

[Niccigrace]

easier said than done but don't worry too much about it or the stress of worrying will make it worse. It looks worse when it's all bunched up. I loose at least that much each day. I have suffered with hair loss for over 15 years and once saw a specialist. There isn't a lot they can do. The good thing is that most of time when lupus is involved literally as soon as the hair comes out new hair starts to grow back through. I went to my hairdressers who styled and cut my hair to give my hair the appearance of volume. I'm not going to lie I have tried all sorts and it's a waste of time and money. It is upsetting but it will come and go . When it's ok I have long hair when it's bad it's back to a choppy shoulder length haircut.

Good luck - keep your chin up!

[Kimplr]

I usually lose a lot of hair in the spring. I use biotin and folic acid to keep my hair growing.

[Joy_1]

MTX resulted in hair loss for me too.

Once my body 'got use to' the MTX then side effects like hair loss and mouth ulcers stopped. It took a few months for my body to get use to the MTX.

[Rubylu]

I tend to lose great clumps like that whenever I have a flare. It settles when my symptoms ease, but I am so much thinner up there from 2 years ago. Getting good tight control of my symptoms seems to be the only thing that reduces it!

[zeynab]

I am sorry about your hair loss. I know very well what you mean and how you feel.

I need help too.

I suffer from lupus too. About a year ago i was diagnoised with lupus, only in my scalp.

I lost mass amount of hair, i have bold patches all over my head. I am 41. And i am on methotraxate.

About 15 yeras ago, on a domestic violence, my ex pulled a lock of my hair, right at the center part of my head. A handfull of my hair was in his hand and i was in great pain, evey time i remember this i get this strange pressure feeling at the roof of my mouth.

I never took any action, but sometime after my hair loss began. Every time i went to gp, he just send me for blood test and gave me iron tablet. Not helpful at all. It took this long for him to refere me to dermatologist. But I guess it is too late now. I wont get my hair back neither my confidence.

My cousin looks after herself , and she said take biotin (high dosage), it may help. I hope you feel beter and dotry biotin you never know,

I am on tears now and i cant type sorry about the long post.

Good luck to every one.

[soootired in reply to zeynab]

I just read your post and just want to say that I feel for you and what you've been through.

No one should ever have to go through any kind of violence especially in the home where we should feel safe.

I hope that it is behind you now?

Sending you a big hug.

Xxxx

[Charliebear68]

I get loss all over but mainly at the front and sides at the minute. I do have thick hair but it has gone brittle and lack lustre 🙁 with baldy bits at the sides...however, it has started to grow back at the sides so I've had a fringe cut in so it blends in. I am blessed with a fab hairdresser. I call my 'new growth' at the sides 'cats ears' because the little buggers won't lie down@! My pillow is quite furry when I get up at the moment but summer is when I shed ☺ I'm driven crazy with itching too so I have citirizine (spelling 🤔) and T Gel shampoo...

Try not to worry because it does make it worse but deffo mention to GP!

P.S Tootsies are fine 😆

C xx

[soootired]

I was losing TONS of hair every time I washed it, I researched how much was "normal" (Apparently up to 100 hairs which seems a lot) but mine was more and visibly beginning to thin. I'd also lost about 80% if the hair on my body.

The advice is good about recording it, i still have loads of photos on my phone of huge hair balls saved from each time i washed it!

This was the main factor in asking my rheumy to up the ante medication wise and since I've been on aza it's SO much better. He said it might have been the hydroxy, but I knew it wasn't so I pushed.

It's growing back slowly, (I've been on it 6 months) and I now have lots of baby hair mixed in and it tends to look a bit frizzy but I refuse to complain because it will get longer soon and hopefully add some much needed volume!

I hope it resolves for you because I remember how distressing it was for me.

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

[LouLamb]

Before I knew I had lupus I lost loads of hair . Every time I brushed my hair loads came out . My hair would literally be all over my house . It still comes out from time to time but nothing like it did 2 years ago .

[happytulip]

I was always under the impression that unless it was medication related, hair loss in Lupus was down to the disease attacking the body. In the case of hair loss it attacks the hair follicle which then make it fall out. Whenever I have a flare I lose a lot of hair, in handfuls and it always has the follicle attached. Once the flare settles the hair loss reduces but never goes away.

I suppose some people react differently to others. Is the above correct? I was told that no amount of product can stop the hair loss. It might help to change the appearance by adding volume etc but it won't actually stop until the disease is under control. That's my understanding anyway. I can't comment about steroid shampoo because I've only now learnt of it's existence!!

Can someone tell me a bit more about steroid shampoo please and biotin? What is biotin and how does it help hair loss? Thank you! And thanks Susielouberry for a brilliant post that is providing so much shared information! Xx

[Janethaywood]

Hi I've been ill now for about 18 months starting with vascular arterial disease! Had bypass surgery after a failed angioplasty crushed my arteries in my groin ! I was 46 at the time, anon smoker so it came as a bit of a shocker! Developed sepsis whilst in hospital also ! Was a catastrophe! Anyway my point I'm getting too is since that ive suffered extreme pain, hair loss , fatigue to the point if I can get away with staying in bed I will, depression and a temper on me like a mad woman! These symptoms are just the tip of the iceberg! Firstly I was told it's chronic pain then fibromyalgia, I'm not too sure ! Oh and I have the worst ever sweats u could imagine too! I feel desperate for answers, I'm sure my gp thinks it's in my head 😪😪

[F8shc-]

It's interesting reading about everybody's experiences of lupus and hair loss. I am a fellow sufferer, my hair fell out about 10 years ago, it grew back to be very sparse and fine, I now wear wigs, supplied through dermatology by nhs! So many people admire my hairstyles & ask which hairdresser I go to!! I feel much more confident nowadays, despite lupus flare ups!