Does anyone have Discoid Lupus that has caused pe... - LUPUS UK

LUPUS UK

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Does anyone have Discoid Lupus that has caused permanent scarring and alopecia?

Purpleowl12 profile image

Hello! I am new to this group :),

I have had discoid lupus on my scalp for over 20 years which has got worse and I have permanent scarring and alopecia. I just wondered if anyone else has anything similar and if so what medication or ointment/creams they use that may help?

I am on Hydroxychloroquine and just been put back on Mepacrine too. I have also been told to use Dermovate cream on the lesions.

Be lovely to hear from anyone who suffers similarly (particularly women like myself as I feel there is little help from the male consultants with regards to female alopecia).

Thank you :)

16 Replies

OMG - me ! I so agree the male consultants aren’t interested in the hair loss or scarring. I have both. I found the Dermovate useless. Hydroxychloroquine helped. Now I put a mix of Rosemary oil and Coconut oil on my scalp prior to washing and it has really helped. Heard about that trick on here. I don’t know why we don’t have a linked up system in UK for Immune illness. I saw so many people and there was no link up.

Purpleowl12 profile image
Purpleowl12 in reply to Cas70

Hi Cas70,

Thank you for your reply. It means so much to not feel like the only one dealing with this !

The rosemary oil and coconut oil sounds really interesting. Have you found that helps with itchy and sore lesions on your scalp? Do you put it on the night before you then wash your hair ?

I’ve tried Argan Oil which I was recommended which smells nice but I don’t think helped in any way ...... although maybe I didn’t use it regularly enough?......

Thanks :)

Cas70 profile image
Cas70 in reply to Purpleowl12

Hi - so glad it helped to hear - you need to seek a Lupus Support Group near you - I run a Sjogren’s one and it helped me most of all. Otherwise we live in this surreal world that no one can understand. Do ask for one thru this website.

The Rosemary/coconut is so soothing and relaxing I usually put a towel over my pillow and use it the night before, even leaving it on whilst having a cuppa before my shower is good! Big tip - put your shampoo straight onto your hair and rub well in or you will have oily hair all day. Slowly add a little water until it lathers up.

It has stopped the itching and I am sure my hair has stopped falling out quite so much. What makes me angry is that they could have tried steroid injections to stop the hair loss but faffed around for months and then said it was too late.

Nivea is my preferred moisturiser or Aveeno as it soothes my skin. I use all Nivea products far better than most. I find exfoliating legs, arms and face help them not dry up so much as moisturiser sinks in more.

Don’t hesitate to get in touch ever. Cas x

Purpleowl12 profile image
Purpleowl12 in reply to Cas70

Thank you Cas,

Great tip! I will get some oil and give it a go.

I am also going for a consultation about hair toppers at the weekend which will be interesting as getting a bit fed up of always wearing a headband to cover my baldness everyday!

Take care and thanks again :)

carorueil profile image
carorueil in reply to Cas70

Thanks for this info - been diagnosed with scalp /alopecia Lupus (after scalp biopsy) - only symptoms were bald spots on crown and itchy scalp. Dermato prescribed 400mg of Plaquenil for 3 months. Freaked out as hyper sensitive to drugs. Got 2nd opinion in Spain; he prescribed me steroid liquid.. Did that for 2weeks and calmed things down. He told me skin lupus/alopecia same treatments. Just hope it works - scalp feels a little bit itchy at the moment but hubby says no red marks etc. (Steroid cream had petrolatum in it which I'm allergic to) Just hoping I can avoid taking too many drugs..

I have the same. I was prescribed Dermovate also and on Hydroxychloroquine. I ended up just shaving all my hair off as it was just coming out in handfuls when combed. I have a special shampoo (will have to look for the name) that's red and it supposed to help with the itching and dryness. It's not a nice experience I can definitely say that. It took along time to be listened to about the hair loss, I know I had other things going on that may have been a little more important, but it took far too long in my opinion for someone to listen and help.

Have they offered any other help to you?

X

Purpleowl12 profile image
Purpleowl12 in reply to Karm

Hi Karm,

Sorry to hear that you haven't had a positive experience either. It's certainly frustrating that they don't seem to realise the emotional impact of the alopecia and hair loss.

If you could message the name of the special shampoo, that would be great; thank you. Do you wear a wig or hair topper now?

They are arranging a biopsy as haven't taken one for ages but that's it really for now.

Thanks x

Karm profile image
Karm in reply to Purpleowl12

I used to wear a wig, but can be very irritating and sweaty, so have literally cut my hair to a number 1 - number 2 and dye it and leave it like that at the mo. Ketoconazole shampoo is the shampoo I was prescribed.

Purpleowl12 profile image
Purpleowl12 in reply to Karm

Ok, thank you for the shampoo name.

Your hair sounds cool :)

Take care x

Karm profile image
Karm in reply to Purpleowl12

You can also ask for scalp scrapings and hair samples to be taken. I think it's got to be done by a specialist consultant, not all of the doctors or consultants are allowed to do it. It's worth asking tho, tells you of there is any yeast infections etc in your scalp and then they can help with a remedy (hopefully)

Purpleowl12 profile image
Purpleowl12 in reply to Karm

Ok Thank you :)

I have been referred for a biopsy so will be interesting whether there is a yeast infection.. haven't heard of that before.

Thank you x

Hi, I have had dle now for about 2 years and also RA. I use Dermovate ointment and also Eucerin scalp ointment which I do find calms it down. Hydroxy didn’t help me. I’m on azathioprine and abatacept and wouldn’t say the dle is controlled that well. Currently my scalp is very sore but I’ve been fortunate that my hair does grow back when I lose it.

Hi,

Thanks for replying. It's really uncomfortable isn't it when your scalp is sore. I have also used Etrivex Shampoo (on prescription) in the past which is similar to the Dermovate but not sticky like the Dermovate which might be better if you still have plenty of hair.

Great that your hair grows back too :)

It does seem to be the DLE that isn't very well controlled and I wonder whether there isn't much research in this part of Lupus compared with SLE which is often similar to RA.

Take care :)

I’ve never heard of Etrivex.. will look into that. No, there doesn’t seem to be much knowledge and I haven’t come across many people that have it. Hope you find something to ease it too x

Thanks.

Yes, the Etrivex shampoo is good and you just have to leave it in for 15 minutes before you wash it. It might be worth asking at your next appointment.

Yes iam new to this group too and i have discoid lupus i got permamnent scarring on my scalp its actually pink now n its been years it hasnt really become big i was put on plaquenil and prednisolone but its too strong it brings about other things and messes with my body but i have been in remission for over five years got pregnant bt got blighted ovum recently so iam going to go back and check to find out if am in flares again

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