Have you experienced Hair Loss with SLE? - LUPUS UK
Have you experienced Hair Loss with SLE?
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I think something should be avalible on the NHS to help with hairloss it affects a majority of lupus sufferers that clearly get depressed when they lose hair yet my rhuemy does nothing!!!
This is very new to me (the hair loss thing) and quite alarming! At least when feeling really rough I could hide behind my fringe. Now my hair is so thin it's almost not possible. Do you have any suggestions for hair loss? I think underneath it's starting to grow back as I have a lot of tufts coming.
You might like to take a look at our factsheet on the skin and hair. It may have some information that you'll find helpful.
lupusuk.org.uk/want-to-know...
Thanks Paul - not much info about what to do about the hair loss. I have cut a lot of it off and am hoping the new growth will continue!
Generally, whilst in a flare or on a treatment that causes hair loss, there is little, if anything, that can be done to stop it. Generally it will grow back after the flare has finished or the treatment over. Unless it is caused by discoid rashes, in which case it may not grow back.
Do you mean you'd like more info about what you can do to disguise it (wigs, hair extensions etc)? Or are you asking about ways to prevent it?
Ways to prevent it happening again really! I think it's coming back (underneath it looks like there's quite a bit of hair growth). I had a severe allergic reaction (possibly - doctors baffled) in August which knocked me for six. Everything swelled up, I had a high temp kidney infection and felt awful. Afterwards all my skin fell off!! Yum! I think the hair loss is the aftermath of it all. I am guessing that it's probably not possible to avoid the hair loss. I need to learn to 'big up' what I've got left!!
Unfortunately there's not a lot that you can do to stop the hair loss if it is caused by a flair or treatment. The best preventative action is to see if you have triggers for your flares and avoid them. One trigger that causes flares in lots of people is UV exposure. Covering up and using high factor suncream are good ways to protect yourself.
Maybe ask a question on here as well to see if anybody has found a way to prevent or reduce their hair loss that works for them as an individual?
Hey Davinafrost
mine fell out lots as a young girl i wanted to be like other girls my age. Anyway besides that i started using nioxin system 4 last september and its made a real difference it stops hair from falling out and looking so thin my hair is a mixture between thick on top and thintowards the bottomwhich is sort of ok so put it up all the time.
Thanks! I'll give it a go. How long did it take for you to notice any difference? It's my 50th birthday party on Saturday and I've only got about half my usual amount of hair. 
about a few weeks my hairs really long and now when people look at my hair they say it looks the same as before i lost it i do have my hair up the shampoo has made it that thick i can put it in a beehive!! lol You can only buy the nioxin online in amazon and some other places normally the price is £20 but can be even cheaper it comes with a shampoo, condition and leavein conditioner so its brill for the price and it works.
I heard from a leaflet what i picked from st thomas hospital based on lupus that there is an injection you can get to stimulate the fall out and work on forming new hair to grow it does get injected into the head but i wouldnt mind if it can make my hair look better than it is
Thanks to all for helpful comments, my hair is so thin now having been used to having loads so feeling really mis about it, I will try the nioxin system. I have been bald twice before because of steroids, but could see my hair growing back, this time there is no sign of it,
cuddles and care to everyone, one day they will find out the cause and cure, most people have never heard of it and have no idea of the misery it causes x hollyhock
How absolutely charming NOT I too have always had masses of hair, now very thin and what with ageing skin and rotten hair, I truly sympathise and hope it all grows back very quickly for you, someone suggested Nioxin so I ordered from Amazon this morning £17 pounds something will let you know if it even begins to work. Love and healing to all x
I've just started to take Viviscal, I read somewhere that is v good but need to take it for 6 months to see a difference. This one is v expensive, £100 for 3 months, from Holland and Barrett but I will spend the money if it helps, I'm so upset to see the 3 mm gap between the hair follicles at the top of my head and along the parting.
I too have have hair loss, but mainly at the temples and now receding back at both sides. There is some new growth but baby like quality hair. I've been losing hair constantly for about a year especially following introduction of Plaquenil. I now have only about half of my original amount. It's naturally straight and fine but i've lots of roots. I don't dare have body waves any more, not enough hair now anyway for it to look right. GP and Rheumy
not interested, they more or less said "what do you expect". I have a mild presentation
of Lupus, have had endless symptoms for about 20 years but only had it diagnosed by chance 2 years ago. I felt like a super hypochondriac, all those years, embarrassed to visit my GP only to have more inconclusive tests. I must admit although I have mobility issues due endless leg pain, bone pain and all the usual tiredness, brain fog etc. Its the loss of my hair that's really getting me down.
Have ordered some clip in hair extensions this week and hope they will work out ok for me.
Will also try out the Nioxin, from Amazon, thanks for that tip.
Hair extensions is not great i wanted to try them but found out they cause to much tension and can actually make it fall out alot more because the clips on the extensions are putting stress on your already thin hair. I am using clip in buns i quite like them much better they are elgant and noone knows the difference i got them from the beautyworks website if your not interested in the buns then try a hair piece from the same website its quite like extensions but has only got 2 slide in clips that stay on no matter what il leave a link for the website you can browse on there for ok
I've been dealing with hair loss before.When i tried using Reloxe at reloxe.com. I had heard about it's ability to naturally grow back hair and it worked within only a few months!
I lost all of my body hair at 13 - head, eyebrows, eyelashes, pubes etc. It took 13 years to groow back again. Lupus was never mentioned as a possible cause and all I was offered was a free NHS wig.
I am now in my mid 40's and have still not gotten over the trauma of it all. I was finally diagnosed wiith lupus last year after several miscarriages and years of illness. The NHS needs to learn more about lupus as people are suffering out here!
