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Hair loss

Please can anyone on here give me advice on how to stop or reduce hair loss it's so bad lately that my shower keeps blocking up with hair.

At the rate it's falling out I'll be bald in a few months, I'm now too scared to wash it and am thinking of getting it cut short which in all my years have never had really short hair and I don't think will suit me anyway.

My doctor said I'm not to get to stressed as this will make it worse which is not true as lupus is causing my hair loss nothing else, he also said he can give me something if it gets really bad like bald patches which I don't have as of yet just really thinning and dry hair which always now looks frizzy.

I'm not a vain person I just don't want to lose all my hair Its so frightening it's making me feel very insecure.

Can anyone tell me if you can lose all your hair completely or does it just get thinner and thinner til there is nothing left 😔

9 Replies

I lost half my hair over years, despite excellent diet and outside life to a degree, my iron, B12 and also D was low, and also my Thyroid was running low also. If any of these are out you will have trouble maintaining hair and hair growth. Since treating the lot it has all grown back. MaryF


Thanku for your reply it's good to know that the hair can grow back, when I have my next rhuemy appointment in June I will ask for some extra tests to rule out any thing else.

It's very alarming as over the years the hair loss has been a lot less but the last month or so it's doubled and some and even my kids have noticed my hair all over the house.


Your GP could run tests for Thyroid, B, iron and D....if you tell them that you require this. MaryF


Hey Pinky

That is so distressing. I can feel your panic and stress.

When my hair started to go so fine that you can only see a strand against a black background my heart hit the ground. Through all the ups and downs of this tortuous disease nothing fazed me until it affected my hair. I was shocked, then rallied then cried. Through all my life I prized my lovely hair. No matter what, I could style my hair and it lifted me. Now my best feature dessertes me.

I am afraid it is another aspect of Lupus. I know, hard to take but for your general health you must come to terms with it

There are lots of people on here that share our story. Some mention special hair products, others meet the challenge of hair growing back another colour and texture! What a engaging exciting prospect!

please take your docs advice. Stress worsens all our symptoms.

My hair is falling out oh so slowly and there is a running bet who will NOT have a hair of mine on them!

Its sad. I know. I understand.

Please try to accept this cruelest of challenges.

Me? I am promised a very nice wig for the time between derth and any grow back I will choose it soon and have fun! it is my choice. I so envy those who strut about with great courage and no hair, but that is not me. I must replace it and actually look forward to finding one that is a totally new colour or maybe more like my old self.

We all identify with you. This is an important step for you, and me. I thought it all through and counted up all the insults that this condition has blessed me with!!

I decided that I had taken everything on my chin, no problem. But, they are inside, invisible to the world, this, this is an outward sign that I am ill.

Bringing a new game to the table! Well no, Lupus you will not bring me low, after all I have taken from you!! Thanks!!!!!! But this one I will take on. You are not going to beat me with this one. I shall think of a good resolution for me because I have so many options. I have.

Listen to our friends on here. Try one of the choices, anything so that YOU choose, take bold steps, feel in charge of the outcome because that is one aspect I think. You decide. You take charge. You may not loose all your hair, you may do. As far as I can tell, this blight affects different people in different ways. So, hey, hang in there you may see an inprovement tomorrow, but whatever the outcome, look it in the eye and say no. No this does not define me. This isn't what dictates who I am.

Take courage my friend. It is a personal tragedy if you will, but most of us have handled this. You will too.

I understand your response. I was you last year. I have come through, you will too. And tell those wisecrackers that this matters to you.

Sorry, talk about a sermon!

I so identify with that one thought when the disapointment hits. You and I must be very alike Pinky. I have handled this. So will you. Look at all those people around who actually choose to be bald!!! Crazy, right?

I will be thinking about you.

I hope you feel a little better having shared your thoughts.

Lots of warm hugs OOOOOOOO


1 like

Thankyou footy girl I will try very hard to not get too down when I look in the mirror and I have often thought about wigs but I'm not quite there yet where I need one but at the alarming rate my hair is falling out it could be sooner rather than later.

Im a brunette so maybe I'll go blonde who knows. Xxxx


Hi there,

Been done that, got the t shirt. What a nightmare, I didn't dare go to the hairdressers, and when I did, the young hairdresser that washed my hair started talking about styles for thin hair..... I have never had thin hair.... Until then

BUT.... Help was at hand. Get your iron and ferritin levels checked. My ferritin was at 5 for 3 years and my endo said it needed to be at least 100 to promote healthy hair growth. He managed to persuade the hospital to give me an iron infusion (2 in fact, in february and about to have another) and believe it or not, within 2 weeks my hair was healthy again and not falling out. It is so distressing when your illness threatens your very identity but don't give up. There will be a reason for the hair loss, you just have to find it!



Have you tried folic acid? My consultant upped mine from two a week night before Methotrexate to one every night except day I took metho. This has helped my thin hair a lot! Xx



I’ve been trying all sorts of remedies for years. Recently I discovered NIOXIN system. My hairdresser recommended it. I’ve read all the feedbacks on Amazon. Very impressive I must say. I am on my third bottle at the moment. First I bought a starter kit number 2, then just “Scalp and Hair treatment” N3. But checking again with Nioxin website which product suits me best I am using N4 at the moment. Specialists say you should use the whole system- shampoo , conditioner and treatment. But I find it enough to use only Treatment. I can say it really works! As far as I know it was developed to grow hair after cancer treatment.

Also I take 2000 mg/daily of Biotin bought in Holland and Barret (there was a post you can take up to 5000 a day).


I have sone what of the same issue except, it's my body hair. My lupus has caused (according to doctor) hair to fall out. Lupus can effect the hair follicle. Over the years I now have very little if any hair from the neck to waist. From the waist to feet I have no hair. And yes not even down there, it is gone.


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