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Hello & Welcome to all recent newbies...

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Re: Hello & Welcome to all recent newbies...

Postby sorghum » Tue Dec 20, 2016 12:04 pm

Hallo all LPs - I'm a new kid on the block. Officially had oral LP for 14th months, but reading NHS site, it seems may have had it on my feet for 14Years+ ! (GP) didn't know what it was....
As you all write, everything is experimental. On toothpaste I found I was unable to use Aloe Vera types (by Optima and Kingfisher) and their mouthwash as it contains SLS (sodium laurel sulfinate). Dentist advised me against SLS even before LP appeared on the scene.
Was prescribed Beth..something. On looking at the reactions, saw suicide mentioned in bold lettering. As I also have the SAD syndrome, decided it wasn't a good idea to use this rinsey stuff. It also can give you osterporosis. Thought I would rather put up with the pain, than get into deeper water.
Have been taking Gengigel mouthrinse for 2 weeks. OK it's an agonising wash (I was going up the wall and across the ceiling with watering eyes!), but stuck it out, and now only the first 30 seconds are awful. However, the after effects are pretty good - I can almost eat normally. The mouth, tongue, cheeks, etc., are soothed, and I don't wake up 'stuck together' in the morning. So I feel the 2 mins pain is worth hours of comfort. I'll look round the site over the next few weeks and probably meet up again. But like everyone, have got 'seasonal business'.
Season's greetings to all. Sorghum.
sorghum
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Re: Hello & Welcome to all recent newbies...

Postby tillyrose » Sat Feb 11, 2017 7:45 pm

hi I'm new to the site so just finding my way around so nice to know I'm not alone I've just had a bad flare up of lp of the skin again this is the third time I've had it not had flare up since2010 that was the second flare up first time i had it had to pay private to get a diagnosis been back to doctors this time put me back on the mediation i had the first time but i think I've also got it in my mouth been to docs but told me it wasn't and gave me cordasil gel made me worse with burning stopped using it also my toothpaste makes it worse so had a look on the site for some help got some great advise so going to try also going to dentist next week so i see what he says great to know that i can get lots of advise and that I'm not alone thanks again tilly rose
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Hello!

Postby julieh66 » Sun Mar 05, 2017 3:07 pm

Hi there,
I'm another 'new kid on the block', although possibly not so kid-like at 50!
Recently been diagnosed with OLP by a dermatologist after a 3-4 month history of progressive worsening lesions in my mouth, including red, peeling mucosa around my top front teeth....horrible & so painful.
I was then told that the issues I've been having 'beneath' for a few years (which was all put down to the menopause) is actually VLP. I've also developed a lesion on my shin which started around the same time as my mouth issue following a fall when I lightly grazed the area - took ages to heal & then the red lesion developed - apparently this can happen with LP sufferers after trauma to an area.

My consultant described my condition as moderate to severe & has started me on a one month course of oral steroids (reducing dosage over the 4 weeks), following which I'll be prescribed steroid mouth wash & dermavate ointment. I think the aim is to calm everything down & hopefully I'll then be able to start managing the condition with as least intervention as possible i.e. favouring 'natural' remedies which I'm already reading a lot about on the web & also this forum site. Already been using aloe vera toothpaste & mouthwaste (had to stop this as too painful on my gum lesions - might be able to go back to it). I see there is a wealth of knowledge within this site which makes me feel a whole load better. I can see light at the end of the tunnel.

Curious to know if anyone else has a similar 'story' to me & also tried my route of treatment? I'm nearly one week into my oral steroids & I'm starting to feel like 'normal' again...the mouth lesions are healing & my nether region is starting to feel a little bit like it used to a few years ago! I realise this will only be short term & I expect things to creep back but hopefully not to the stage I was at. Fingers crossed. I feel much more up beat about the whole thing as I now have a proper diagnosis which it seems many people have struggled to get after numerous consultations with various consultants etc.

Anyway, think I've written enough for my first 'blog'. I'm all a bit new to this sort of thing & having previous typed a bit & saved as a draft, but couldn't find it again. Would also like to change my password to something I can remember....any advice on how I do this? Also, not sure how to insert smilies from the 'gallery' at the side? Thanks all. Bye for now!
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Re: Hello & Welcome to all recent newbies...

Postby Jules63 » Sun Mar 05, 2017 5:25 pm

Hi, I'm new to this site. Just got my diagnosis of VLP yesterday through the post. I've been suffering for over 12 month's before going to my GP as I felt so embarrassed and still do. Also there us no one to chat to about the condition as this for me is also embarrassing although hopefully now I will be able to get some tips and advice from all you guys so I don't feel so alone.

Jules
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Re: Hello & Welcome to all recent newbies...

Postby Cantata » Mon Mar 27, 2017 8:11 am

Hi, Just joined this site. I live in Dorset. I was diagnosed with Lichen Planopilaris over 2 years ago. I was put on Hydroxychloriquine , I have since tried to change my diet ect to help, with no avail. My hair was still falling out with no chance of regrowth, therefore ive had to except wearing a hair topper which i must say has given me a lot more confident. Recently my dermatologist changed my medication to Lymecycline. Also, in desperation I have seen a Nutritional Therapist , at the moment I have no dairy or grains in my diet (look up leaky gut ) and she is supporting me in this so hope it gets rid of the inflammation in my body.
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Re: Hello & Welcome to all recent newbies...

Postby Teflon » Wed Apr 12, 2017 9:33 am

Hello to all recent newbies....sorry I haven't been around much to support you all..having a mega flare up myself... :(

But hope you are finding some useful information on here..
We do not stop playing because we grow old......we grow old because we stop playing!
Teflon
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Re: Hello & Welcome to all recent newbies...

Postby Gillianna » Fri May 19, 2017 3:27 pm

Hi I'm a new member
I've only just found out about UKLP. Having been a sufferer over 25 years!
The main difficulty for me was getting the original diagnosis for skin LP.
Although my Dentist was very good and on seeing the marks in my mouth referred me to the hospital.
Please does anyone know if it can spread to the tongue and throat.
Gillianna
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Re: Hello & Welcome to all recent newbies...

Postby Ash17 » Thu Jun 22, 2017 10:50 am

Hi

New to the site as well.

Not had great support medically and wonder why in the UK there doesn't seem to be as much info
Around VLP or all the Lichen Planus/S conditions as there are in the US New Zealand and Australia
where it seems they want to do something about giving long term relief.

Be happy to hear experience of protopic which I've switched to from dermovate
Ash17
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Re: Hello & Welcome to all recent newbies...

Postby Phil from Somerset » Sun Jul 16, 2017 5:49 pm

Hi, i am new to site and probably on wrong page.! Lookin for information about Acitretin. Have been offered this as a treatment for L P on legs arms and every where else, Help
Phil from Somerset
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Re: Hello & Welcome to all recent newbies...

Postby Caroline » Thu Aug 31, 2017 2:50 pm

Hi I'm Caroline, rescently diagnosed with severe LP. The only treatment I am getting is shower cream and skin cream so I am itchy all over and my feet are blistered. I'd welcome any advice on blisters as I feel I could cope better if I could go for a walk now and again *wave*
Caroline
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