Looking after my hair

Hi everyone. I've just been diagnosed 2 days ago with Discoid Lupus. I've been given some information of my consultant which says I could loose my hair and this would be a permanent loss. I've always died my hair, so it is quite thin anyway my question is because of my scalp I've not been able to have it done for a good while and it's a mess. Now I know what's wrong with me am I safe to colour or should I go back dark (colour one last time) and then leave it alone? At the mo it's died blonde but my natural is dark so usually have to dye every 6-8wks.

18 Replies

  • Hi Gail, the word to remember is 'could' lose hair. I was diagnosed with DLE 7 years ago which turned out to be SLE and what is clear to me is I have had it at least 25 years. In all of that 25 years I jave dyed my hair red every 4 - 6 weeks with no issues. this year though I have had and am still in a bad flare. My hair has thinned out a lot but my hairdresser says that it is not the number of hairs that are reduced but the thickness of the shaft so I have cut it differently. I am still dying it regularly without any issues. Gat

  • Hi Gail I was diagnosed with cutaneous lupus 20 years ago have not stopped dying my hair blonde every six weeks does get quite thin at times and have different hair cut when it happens mine does grow back thickens up again it's hit an miss and thin at the moment I use volumising products to help I have not as yet experienced permanent hair loss I'm 67 put makeup on do my hair dress up most days to help me with my esteem hope this helps and good luck to you best wishes

  • Thank you that's good to know. Very early days as yet good to speak to ppl who have the experience thank you again x

  • Hello Gail41. I have subacute cutaneous lupus (SCLE) a sub group with symptoms of discoid and systemic lupus. I have had sores on my head for over 5 years now along with a red, angry raw rash up the back of my neck and onto my head. I haven't been able to dye my hair for over 18 months now. It was very painful last time I dyed it and now I know what is causing the rash I think it would be silly for me to risk it. I also lost a lot of hair in my flare and had a number of small bald patches. Some of my hair has grown back and in some places the hair follicle is so badly damaged that I have been told it won't grow back. My hair dresser who is also a friend says she wouldn't dye it for me. Too risky. I had been dying my dark blonde hair a lighter shade for nearly 15 years. It has been hard to accept I can't do it any more and look in the mirror at my now completely natural hair. It is darker than it has ever been and where it has grown back it is virtually grey. Not a good look at just 40 but hey ho - it could be a lot worse!!! just remember though that with lupus everyone is different and everyone's symptoms are different. You must find your own way and that is by trial and error! Good luck. Wendy

  • Thanks Wendy it sounds so vain to moan about something so trivial when ppl really suffer. Just scared of doing more damage. My hairdresser is very good, but told me the last time I went if I didn't sort my scalp out she couldn't do it again - we didn't know what it was back in May. My hair is naturally dark brown so looks rediculous at the moment, but in my heart I know she isn't going to touch it x

  • Hi Gail

    Firstly don't panic as stress will make things worse!

    I was first diagnosed with lupus when I started losing my hair nearly twenty years ago, I was told it might be permanent which put the fear of God in me as my hair was my crowning glory. However, yes it fell out in clumps but then grew back beautifully thick and in better condition and a different colour and has done this four times now, it has become a guessing game in my family now what colour is it going to come back each time, will it have a kink or curl or be dead straight as I have had all sorts, variety is the spice of life! ;-) It has just started coming back again after having none for three and a half years and I have just bought myself a comb which was cause for celebration.

    One thing I will say to you is protect your scalp from UV rays whether they be from the sun, florescent bulbs or low energy bulbs as they all make it worse. I wear bandanas when my hair is thin or I have none as I was used to wearing them under my crash helmet anyway and had quite a stock I just got more that were suitable for work and not just for wearing with my motorbike gear. Take care and if you have sores on your scalp I suggest you get referred to a dermatologist one of these was a brilliant and well worth seeing making life much more pleasant.

    Good luck Madmagz x

  • I know we are talking about dye, but what kind of shampoo does everyone use? My scalp is itchy and red... I have tried dandruff shampoos, but they dry out my hair. I am ready for a new haircut too because I am getting balding in the front along my hairline. Thanks

  • I can only use Tresamme always had anything else dries my scalp out. Whether there's things dermatology could give you (I suspect there is). I have ulcers on my scalp for which I've been given a steroid gel to rub in. Creams don't soak into the scalp the same way as they do skin my dermatologist has told me. If you're not already seeing some1 I would recommend getting your doctor to refer you. It certainly can't do any harm there are lots of things available in specialist clinics to prescribe that aren't available in general practice x

  • I have switched to Holland and Barrett Manuka honey - organic range - I now use their shampoo and conditioner and also their lotion and body butter. I used to use Pantene and others but I am desperately trying to reduce how itchy my scalp is! Thanks for your reply Gail41. I totally understand. As women our hair is our crowning glory and it defines us - so when that is threatened it scares us. Plus getting used to being diagnosed with a chronic condition is bad enough.

  • What is the Manuka Honey like Wendy? I've always had a sensitive scalp so always used decent shampoo. Now it's sore though hadn't considered Organic x

  • Hi all, I'm a hair stylist for now but have had to cut back due to my sle symptoms. We are thinking the time may be coming for me to completely quit as after I work even a few short days I'm down for several. Being a hairstylist and a woman I have a particularly hard time when my hair starts thinning. I want to go into panick mode as with all the other stuff going on with my body and medications it seems like my hair is the only thing left I really like. But my point is having some experience both as a stylist and having lupus I do find it better if you go natural. Yes it is different for everyone but regular coloring does tend to change people's hair and make it a little thinner over time along with aging, then you add lupus in and from my experience its best to be as gentle as possible with both your hair and scalp. So I just did my last color back to as close to my natural color as possible and am going to accept it. I have had boughts like this where I would color and then not but I have found the less I do to my hair the healthier it is and the less it falls out. It also dont seem to have all the scalp sores and irritation as much as when I'm coloring. As far as shampoo use whatever feels the most soothing to your scalp and detangles the best. The less you have to tug on it the better. I also try to air dry as many days as I can, and only blow dry and flat iron when I have to or really need the pick me up of nicely styled hair. I know it seems like a lot of restrictions but I would rather be kind to my hair and scalp and have the best hair impossibly can rather than have it thin and damaged just to get a different color. My husband loves my hair long, I've had all different styles and Lenghts but am hoping with being gentle with it I can keep long and not have to cut it off. Sorry if I rambled a bit, just trying to cover all the bases, oh the reason I said to use the shampoo that feels the most soothing to you is because everyone is a little different. I've tried tons of shampoos trying to find the one that makes it fall out the least and have found that some of the ones that are actually inexpensive but feel really good to me work better then the expensive ones that are supposed to be better. It's a lot of trial and error, good luck, and I hope we all get to keep our hair.

  • Gail41 you've had some great advice. The Manuka honey shampoo and conditioner seems to work for me. They do other organic lines including tea tree oil and aloe Vera. It isn't cheap but it's not the most expensive either. Finally, make sure you stay in touch with this site. It has been a life line for me since my diagnosis - better than any counselling (not that I've had any!) Good luck.

  • i buy shampoo and conditioner from the hairdressers....redken, joico, bed head, gold well etc.,

  • Thank you everyone for your advice and I will definitely keep in touch with the site. I didn't have any idea really what was involved with Lupus as I'd never heard of it. Reading posts on here it seems really complex and in all honesty a little bit scary. My consultant promted me to ask questions when she told me I had Lupus, but I didn't as I didn't realise it was so complex. I will certainly be asking plenty at my next visit. Thanks again everyone I intend to take one day at a time but your support is very very much appreciated x

  • Hi!

    So sorry to hear about the recent diagnosis. I know this all can seem very scary and make you feel hopeless at times, but there is hope! I have been suffering from a multitude of autoimmune diseases for years now and have also attended beauty school and am now finishing my degree in nursing. Through personal experience, knowledge from beauty school and nursing school I have posted my treatment plan on my blog. Go check it out bodyandsolgoddess.wordpress... it should be under hair regrowth/thinning treatment plan If you have any questions feel free to message me on here.

    Best of luck to you!!

  • Thank you so much for replying to me. In all honesty I sometimes feel a bit pathetic. I read the stuff I put on here and compared with some of the things some ppl are struggling with it seems trivial. I guess the thing with this is to stay positive and remember there's always someone worse off than you. It's keeping me sane when I feel sorry for myself. I'm new to this, but seems like an awful condition must admit I'm not looking forward to what might come

  • Ah no never feel pathetic. This website helped to realize I wasn't alone as so many of our family members, friends, coworkers, and doctors will never understand. You shouldn't ever feel guilty or compare your journey to others. Just think of how many people new to the disease are reading your questions which is helping them to realize they aren't alone. In a sense you are helping others new to the disease and new to certain symptoms. Every and any question is important. These are support groups and they are meant to bring you hope so hang in there!! :)

  • Thankyou PThree x

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