Discoid Lupus: Hello All, I have just been... - LUPUS UK

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Discoid Lupus

SunshineT profile image
11 Replies

Hello All, I have just been diagnosed with discoid lupus. I am losing my hair a lot , I am on hydroxychloroquine but have decided to stop that to seek alternative therapy. I have started juicing for 40 days as well as exercising regularly then will follow my journey with a more healthy diet and see if my condition improves. Is there any advice anyone can recommend to someone in my condition? Kind Regards

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SunshineT
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Oshgosh profile image
Oshgosh

My hair is also rubbish,I ran out of ways to comb it! am on Azatropine,which is helping me physically.

I went to a place locally and bought a wig.well happy with it.

Don’t buy off the net,I went to a place 10 miles away and tried loads on,got loads of advice as well.good luck

Hi SunshineT, let us know how the juicing goes. I know I am trying things w/o meds, though there definitely are days I am tempted. I’ve completely changed my diet, and though i’ve always exercised I am trying to focus more on it. I’m curious how the juicing will be. Let us know, and best of luck!

SunshineT profile image
SunshineT in reply to

Hi Brooksidecourt, sorry for late reply, I will definitely let you know.

So what I am trying to do it's a 40 days juice fast only no food then I will carryone with the Autoimmune protocol (AIP) diet and see how that will go!!! My doctors agreed to follow my progress with blood test, so I had one done on monday and will have another one in 4 month.

Concerning my hair apart from having a wig done soon!!! I have started a hair treatment today it is a mix of laser treatment and prp injection it has worked before so I am hoping it will again. From reading comment on the net I think the trigger for my hair loss was a mix of hydroxycloriquine treatment but also sun exposure , I went to the Caribbean for 3 weeks and was constantly in the sun, I thought by putting suncream on my skin was enough, I didn't know it could affect my hair etc... I suppose I am learning about it all!!!

Thanks for your recommendation about ( Ovation hair care) if the treatment I have started today doesn't work I will give it a go.

Tks

in reply toSunshineT

Best of luck. I hope to hear great results in 40 days.

Btw, they do make a spray on, leave on spf for your scalp.

PS, my hair got really bad too. I was losing balls of it every day when I would shampoo. I had grown up never losing hair. Not even in my brush really. My stylist told me about ‘Ovation Hair Care’. It was a life saver! Still not as thick as before, but so much better and shut down the major daily loses, softened it up wonderfully, and it so much better. Idk if you might want to give it a try? Use it every other day (you can alternate you regular shampoo in between), and try to leave it on for four hours before washing out, at least in the beginning. I did, and now I just leave it on for a minute or two at each wash. I honestly love the product.

Jadelee28 profile image
Jadelee28

I have discoid Lupus - I have lost hair in patched and have purchased a hair topper.

Are you all losing hair all over because of the medication you are on?

in reply toJadelee28

Hi Jadelee, I started losing hair about 10 years ago. I only started Hydroxychloroquine / 1/2 months ago.

Sunshine, how did your 40 day juice cleanse go. Please give us an update. 🙏

SunshineT profile image
SunshineT in reply to

Hello, unfortunately I have only managed to do 28 days but I am now on a mainly plant base diet and eat meat/fish twice a week.I have not done my second blood test yet but I do feel a lot better. Also my hair is growing back nicely.

I suppose to do a blood test in January will let you know if any thing positive come up.

in reply toSunshineT

Sunshine, so happy for you and do nice to hear good news from someone.👏👏👏I’ll look forward to January’s report. I hope it all keeps getting better and better for you🤞🙏.

Funkyfish123 profile image
Funkyfish123 in reply to

Hello all,

How was your Discoid Lupus diagnosed? I have been in for constant consultations about my hair loss.. possible scarring and the biopsy shows nothing, but they said it could be discoid lupus on the scalp. Has anyone been treated for this?

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