Hair Loss: Ok so since august last year i had... - LUPUS UK

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Hair Loss

Danielle2419 profile image
9 Replies

Ok so since august last year i had extreme loss of hair like bald patches here and there on my head my hair was very long near the top of my bottom. It began to break of mid length hair and my hair became rope like in september i started using Nioxin system 4 and it stopped the hair from falling out and new hair seems to be forming i got wispy bits sticking out everywhere where new hair is growing. my hair was never thick but just grew more thin as more fell out i just want it to grow back how it was doesnt have to be thick.

Did anyone else experience extreme hair loss and how long did it take for the hair to grow back to be normal again before it fell out. Was your hair long when it fell out? did it grow back? how long did it take? any info would be great (P.S. iv never cut my hair much and dont want to i just want it to grow out long again)

Thank you

Danielle

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9 Replies
megs_tom profile image
megs_tom

So sorry to hear about your hairloss :-( I too am a sufferer of this hideous symptom. I can't give a medical answer, only my own personal experience. I lost a lot of patches of hair over the summer. Some places I hadn't even noticed as it was covered by other hair but I am aware of them now it is growing back due to sticking out bits!! The first big patch fell out in about june/july time and at present it has grown back about maybe just over an inch long. the other bits that came out after are various lengths but shorter than an inch. Hairspray comes in very handy!! I started using a shampoo and conditioner out of Avon. they are the morracan argan oil ones. I feel they have helped the condition of my hair and I do feel less hair is falling out and the hair has speeded up growth since using it for the last 3 months. I get my hair cut like every 2 month, just the dead ends. This helps keep your hair healthier and also encourages growth (not of the bald patches though). I hope yours grows quickly for you, I know how upsetting and frustrating it is. It certainly doesnt help my anxiety and paranoia!! xxx

Purpletop profile image
Purpletop

Most of us suffer from this. I have been loosing hair diffusely for the past few months. I used to have gorgeous thick wavy hair but now you can see my scalp around my hairline and along the parting. It isn't yet re growing, unfortunately. Mine is down to my shoulders and so thin nowadays. It affects me in ways I didn't think possible, it is a reminder of the fact I'm ill. If I go on steroids, the hair loss stops but I don't want to stay on steroids, so I'm losing it instead.

Rachy24 profile image
Rachy24

Hi Danielle

I started loosing my hair last summer too and it stopped for a while but appears to have come back with a vengence and I have lost a lot in the last few days - its very distressing and upsetting. Mine, like you and megs_tom, grows back in wispy bits. I havent cut my hair and I dont blow dry or straigten it any more for fear of making it worse. My hair appears to have become "matted" which according to dermatology is common when the disease causes hair loss. I hope it grows back quickly for you xx

Danielle2419 profile image
Danielle2419

Thanks

my SLE doesnt seem major as others on here as weird it sounds my hair falling out affects me the most so is there any hoe of full regrowth at all has anyones hair gone back to how it was before it fell out.

megs_tom profile image
megs_tom in reply to Danielle2419

Hairloss is a major symptom and causes a lot of distress, I think mainly due to it being visable and it can make us really anxious about going outdoors where people can see it! None of us can tell you your hair will grow back fully and to its original state, I wish I could but I can't be certain. I first had hairloss as a teen, it wasnt patches, more thinning near the partening. then the second episode over 3 years ago. lost one patch, it grew back and my hair was back to it's normal self. I didn't lose any hair for a long time after that. however my health has got a lot worse this last year and a half and this time round I have lost more hair and it is certainly taking a longer time to grow back. I have my fingers crossed for you that yours grows quickly xxx

Danielle2419 profile image
Danielle2419

it is hard your right im cautious of what people can see the fact i cant do normal hairstyles like everyone else the fact that 18 year olds my age love curling thier hair i cant do any of these i have hope that it will grow.and my gp said it would grow back to its normal self. hopefully his right

megs_tom profile image
megs_tom in reply to Danielle2419

I know hun, being 23 I want to have a nice hairstyle and curl it etc but its bad enough just trying to get the stickg out bits to stay down!! One good bit of advice is avoid dying it all costs!! I noticed much more came out when dying it. Xxx

Saran28 profile image
Saran28

Hi hun i really feel your pain i am 45 and losing my hair due to this illness has really upset me i have an 19 yr old and know how you must feel at your age. I can only suggest hair extensions as a temp measure when you are going out to special occasions. It will grow back i am sure i myself have only been diagonsed last year and have lost loads. I wont let it get me down i want to stay positive. The less you think about all the ways this illness has affected us and focus on how your health is improving helps. God bless i really pray your youth is full of happiness and good health. Xx

basketcase54 profile image
basketcase54

Awww sorry to hear of every bodies hair loss wa so worried it was just me mine has dropped out from the front and is so visible I've been soooo upset as I see it and I do notice people looking at my bald patch even my grand daughter brought me to tears wen doing my hair ohhhh nana u got a big hole were no hair is I cried she didn't know why she is only 5 poor love my doc said stress and it will grow back but wen I don't know and no one knows it's a waiting game but in meantime I'm worrying more as it's so visible gentle hugs to everyone xxxx

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