I have Lupus, Discord Lupus and Lichen Planus it's good to see I'm not alone but I need help??

I don't know what to do? I like a lot of suffers my hair is getting thinner So I'm wondering if having a soft perm is a silly thing to??

Plus does anyone else find when they pass urine that their knuckles ace?? or is that just me? My rhuemy dismissed me when I asked. Any help welcome x

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  • Hi Minimum

    Know what you mean about the hair, I now use a volumising mousse before blow drying my hair, and a large round brush to give more lift without getting a too tight curl. Not so sure I would try a perm but speak to your hairdresser first, a good hairdresser should look at the condition of your hair, I would also mention the fact that you are on medication. On my last visit to the hairdressers I had my hair cut slightly differently - a 'blunt cut' rather than my usual 'cutting into' style cut (hope that makes sense!) to give an illusion of a fuller head of hair. Good luck with whatever you try. xx

  • Thank you Angela, an yes it does make sense about ''blunt cut''etc my hairdresser knows about all of my med's and says my hair is in good condition thank goodness it's just so very straight, and less of it :( one thing I don't tend to do and never really have is put "stuff" (as I call it) in my hair, it doesn't feel right. But I'll give it another go before I have a perm to see if that works. Again thank you xx

  • I have had the perm and so far so good, :) I feel that it helps look like I have more hair and it looks thicker so not so much of my scalp can be seen. So I'm happy so far xx

  • Hi there!

    Sorry to be the barer of bad news but my dermatologist who specialises in all kinds of Alicia including LP told me that the more chemical treatments on the hair the worst the fallout.

    I had perms for years and now I have a considerable amount of hairloss. As a sufferer of lupus, RA, fibromyalgia and LP I am not a candidate for a hair transplant. I'm VERY conscious of my 'baldy bit' and would do anything to rewind the clocks.

    Have you had a scalp biopsy to confirm the presence of LP?

    Please whatever you do just be careful and be happy. :-)

  • Hi BetsieBoo,

    Thank you for your in put, No I haven't had a scalp test I'll look into that. I no in my harts of harts that even with out all the other stuff going on with my body having a perm isn't the best of idea's, my hair dresser wasn't keen on doing it but I made her and she used the gentlest one she could find, so far I'm happy with my hair it's not too curly but just enough to have some body to it, the last time I had anything chemical on my hair was about 4 years ago so I hope I haven't overloaded it!!! Again thank you and I try to be happy most days.

    Lynda ;) x

  • dear lynda

    i have lichen planus and my hair is afffected a lot

    i just wanted to tell you that aloe vera is helpful to me , it minimises the inflammation

    when you have and attack i have in the garden ,i prepare the juice and put it on my scalp

    for hours if i have time or for half and hour , it feels good and cool. then after two days or once a week

    i put essential oils and almond oil they also help the inflammation and strengthen the hair

    also aloe vera strengthen the hair

    it made a lot of defference in my hair it was really thin and it became normal again

    this summer i had again lichen attacks and i started to put aloe vera and my essential oils

    if you are interested i will send you the mixture it's easy

    gratitude good luck

    ps if you want you can buy pure aloe vera from the pharmacy and use it also

  • O thank you so much, yes please if you would send me the information I would be grateful, I have ended up having it cut really short now, it does look better but it is still very thin :( I will be going to the pharmacy and garden centrer first thing in the morning!!! well as soon as I can get moving that is ;) thank you Gratitude

    minimum/Lynda xx

  • could you please send me the information on how to do the mixture that you use

  • Hi Womanbsweet, I'm sorry I never did get back to Gratitude on that but I have found that Vit D has helped me along with Azathioprine, for my hair to slowly grow back a bit, as for Aloe Vera I finally found a plant on Amazon plus a friend sent me a plant of her's too so when I have a skin flare up I cut a bit off and just smear some of the juice onto the spots and normally only need to do that for a couple of day's before it get's rid of the redness, and in-between I keep the bit I cut off in the fridge and just take a little off the end so the juice starts again. I hope I have helped a bit. If I can help any more just get back to me and I'll do what I can. Lynda xx

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