If you've had hair loss due to lupus, has your ha... - LUPUS UK
If you've had hair loss due to lupus, has your hair been able to grow back to normal?
Paul_HowardPartnerLUPUS UK351 VotersPlease select one:
Yes hair grew back as normal but i am seeing signs of hair lost at the front of my hair
I think I am very lucky as I have extremely thick hair anyway.
No my hair is has thinckened up at the back, but top and sied have not thickened up and when I wash my hair there is allways hair in the sink.
My hair is only fine anyway i have a bald patch on top front sort of on the side and also round the sides is bald patches an thinning.
an area of my hair fell out but is growing in curly, still have lots of hair coming out when in the shower but from all over so not noticabe loss
Still losing hair but I assume hair loss is due to Prednisolone rather than the Lupus
Still losing hair however when it has grown back it has been a different texture and very very curly. The shape of the hair follicle has changed and become flatter.
Mine has grown back, but it is still fairly thin and it now has a wave in it whereas I was straight before!
I've lost hair over the years, I was fortunate to have a good head of hair in the first place. Now I have about half the hair I used to have, and am loosing it at the moment, but no bald patches. I now have some new fuzzy growth underneath, which is possibly due to the Hydroxy.
I get Rx Minoxidil 5% from St Thomas and this has resulted in some regrowth. However overall my texture has changed from smooth to slightly kinky/ frizzy. I had lovely hair before. It also grows in very fine and white. And not always on my head!
did you request for the Rx minoxidil 5% from st Thomas? who gave it too you there? and is this a tablet or injection or something?
Thanks for the comment
There is a dermatology clinic at St Thomas' specialising in hair loss. Sorry cannot recall consultant's name but I was referred from the lupus unit. It's a lotion they formulate at the pharmacy there and there is a charge even as its NHS. However you can also buy over the counter. The brand name is Rogaine or Regaine. Only 2% for women but 5% for men. I am passed childbearing so they allowed the 5% for me on Rx. You put a small amount on at the roots of affected areas only, twice a day. I had regrowth quite quickly after two weeks but can take a month possibly longer. The hair grows back very fine and for me at least, white. But then I dye it anyway so the appearance improves overall. I think the branded product also comes in a foam but that is for larger areas.
Oh and if you stop using it, all the regrown hair falls out in about a week or so; its a forever treatment.
Hey jsue
How much was the charge of it over the nhs am prepared to pay anything for new set of hair
Oh and any stoppage or lowering of my Hydroxy dosage meant significant amounts falling out after just a few days. Very depressing.
My hair is falling out in hands fulls when i wash it, im lucky i have very thick hair so its not noticable, to other people for now.
i have afro hair. my hair has not grown back to its normal length since having chemotherapy to dampen the lupus down. My anti rejection drugs have also made my hair drop out.
My hair grew back frizzy and is falling out again with pred and metho and also is very frzzy
Yes my hair has grown back each time I have lost it and it has always come back really thick and in wonderful condition though a different colour from when it fell out, I am bald again right now but have just started getting some white tufts coming through so it will be interesting to see what colour they turn this time and whether it will be straight again or have a curl or kink in it. I have had all sorts. I will be starting to use a shampoo called thick and fuller once the tufts get a bit thicker and with luck I will be needing a hair cut again. Each time I have a flare my hair is the first symptom I notice and the bald patches affectionately get referred to as my "crop circles" by my family and friends - my ense of humor gets me through this.
I have heard that the shampoo called Alpecin available in most chemists and supermarkets can help with thickening hair up there are various other products in the range too.
Good luck I hope your locks come back like mine did, I have my fingers crossed that mine will again and will never moan about a single grey hair! 
Madmagz x
Mine hair falls out in hand full when having a flare, I get the halo effect. Lol .... however I have never lost it all. It always grows back. My hair dresser said I have fine hair but lots of it
I first lost my hair 2 years ago. Started breaking away in clumps and then completely went so had a wig (nicknamed Winnie!). It grew back eventually but very curly!
I lost it again last Autumn, in the same way but in 2 stages. First the top (so a hair piece covered it) and then the rest so another wig (this time called it Marjorie!) Thankfully it's growing back again, the top is thicker as it was first to go but once more, very curly (and unfortunately very grey!) I'm hoping by the summer I can go without my wig and I might even go blonde!
Saw a discussion about shampoo on forum - Nioxin so bought some and hoping it will help the rest of my hair will catch up. I'm not expecting too much and know I might end up losing it all again. At least I don't get bored with the same hairstyle!!
having been losing it in patches, now grown back but very thin. Funny thing is where it has grown back, it is a totally different colour - saves a fortune on colouring it.
For about 1 year I have noticed that my hair which was once very thick has been thinning a lot. I also have patches where there is no hair at all. Some parts are showing signs of re-growth, whereas others are shiny and without any sign of regrowth. I do not know what is causing this as my consultant says that it is not down to the chloroquine that I have been taking. So maybe it is the Lupus or something else ie stress.
My hair has grown back pretty much back to normal. When I'm on high dose meds or in the midst of a pretty bad flare I am more aware of clumps of hair in the shower but generally regrowth seems ok for now. Fingers crossed it remains that way but we'll see
My hair is now very thin, up until the last 6 months whenever I had a bald patch it would eventually grow back but then another area would start to fall out. My latest patch which is on the left hand side of my head is starting to grow but has been bald for about 6 months.I also have small patches all over my head.
My hair was always long and lots of it but in the last 2 years I have seen it float away down the plug hole I try really hard not to get really low about it as there is nothing I can do, I have recently had it cut much shorter so now I see short hair going down plug hole sometimes it's lots and sometimes it not too bad.
I was always loosing my hair in a big way. But when i was eventually diagnosed and given the medication this has slowed down and have noticed less hair loss 
I have thick strong hair, it changed condition wise when I was first diagnosed with lupus, the texture was like candifloss..........and when going to the hairdressers to have my colour done , the hairdresser said I was wasting my money as the colour wouldn't take. I went on to prednisolone , and my hair grew back quite thick ......I then went on to methotrexate , and I am back to square one. My rheumy said that it happens when the medication gets reduced?
So ,it is down to you're condition rather than the medication.
I have hair loss every time I wash my hair (fills the plug hole with large ammount of hair) but it does not seem to thin my hair or cause obvious loss
have allways had very thick hair, hair loss then has not been problem, gone thin but ot sure if its age or lu
I have found my hair to be thinning quite a bit, plug is full each time I wash it also the condition has changed, not very shiny and harder to manage.
I have noticed every time I wash my hair......I lose around 1/4 bagful of hair. My texture has also changed, its very thin, dry and brittle. 
Hi Im,
One of the lucky ones my hairloss is mostly due to age and some lupus its getting a little worse but can cover it so not too bad but you feel old and frumpy with thin hair my way is to laugh at life as much as possible, and others feel sorry for me with a balding head thats their problem not mine.
Good luck
Yes I had thick hair until it started falling out due to lupus it's gone extremely thin nw and still is thin.
After the initial thinning ie my brush and comb being filled with my hair and my shoulders and back for ever needing dehairing my hair did grow back only to get to the breaking stage with each flare.
No, it grew back coarser and curlier
Bit of a difficult one to answer i lost my hair to chemo then it all grew back then i have lots of new patches forming and some have not returned back to normal. Is it part of the auto immune disease or part of the process of having chem pos breast cancer.
My hair started falling out when I was 14 and although I am able to grow it now (30yrs later) I am bald on top of my head and sides - only the back of my head has 'proper' growth and will probably remain that way, so rather than look like Friar Tuck I go for the bic option lol. I was told that this is because Lupus has scarred the folicles?!?
Yes lost alot of my hair then it grew back. However I still have minor hair lose continously at the front of my hair
I had really thick hair.But now if is very thin, dry and brittle. At present i have lost a third. I dont have bald patches yet - but it wont be long until i do. Everytime i brush and wash my hair it falls out in handfuls. It is really heartbreaking as I always had lovely thick hair - not now. People have commented on how thin it is and it is also going curly and frizzy. HATE LUPUS X
bald patch on head filled in hair on body and arms thicker and longer
I had really think curly hair and use to say 'I wish my hair was thinner' as it was hard to manage a lesson in 'be careful what you wish for' no patches but everytime I wash it the plug is full and there is hair all over the house some days it is worse than others. I notice that it is not as thick but no one else seems to luckily hoping now on meds it will stop or at least slow down.
Sometimes mine grows back thin, sometimes thick and black (I have brown hair) and have had a few grow back grey I use shampoo and conditioner with argan oil in and that definately helps it to grow back quicker and thicker.xx
Ive lost most of my hair sadly and now am loosing my eyebrows due to eyelid and face inflammation. Some hair on my scalp has come through in patches but is white :/
My hair is patchy and very thin go to hairdresser every week it lasts about 3 days at most.I have worn a wig it makes me feel hot and itchy when I take it off what hair I have is flatterened
Shaved mine off. Was very liberating!!!
I lost every hair on my body at the age of 13 and it took 13 years to grow back! I am now as hairy as your average yeti - hurrah!
I was told using baby shampoo and washing hair once a week would help with the falling out this it has, still really thin but it's helping. Ruth
Flares and chemo caused hair loss. My hair grew back well, but when my husband died and I neared age 50, my hair became chronically thin. It could be lupus, as something began causing heart and lungs to be inflamed (still looking into that). My lupus/myositis has moved from one area to another for 20 years.
Hair has regrown but not exactly normal - fine, slow growing hair with less grey than before. I had thin patches of hair and a red scalp (due to lupus photosensitivity) but no baldness. Over time the affected area has moved from the back of my head, to the top and is now at the sides. My pillow used to be covered in hair every morning. Now that has slowed down a lot - I think due to the hydroxychloroquine, which can take up to 6 months to get into your system. My consultant advises eating red meat and beans to up the iron in my diet which will help my hair. I use a juniper shampoo which was advised to keep the scalp healthy and have bought some alpecin caffeine shampoo to try, only used twice so far. Oh and of course, I keep out of the sun, wear a hat and use factor 50 sun cream.
Noticed hair loss at the front but with chemotherapy I had to shave all off as it became very patchy
Hair loss occurred with iron deficiency anaemia which was triggered by the lupus, grew back but not as thick. Then started to fall out again as a result of the chemo.
Yes,
With the hair loss with lupus does the hair fall out little by little like a few strains a day or more in clumps..and from the font or the back of the head first
And I forgot the top of head is itching not to bad here and there no redness or pain no bumps ..
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I have lost all body hair. I have absolutely no hair from underarms down to toes. The hair on my head is slowly starting to thin.
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Thank you for your time and interest. It is very helpful and appreciated.
