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Hello & Welcome to all recent newbies...

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

Postby Purple Circles » Sun Jun 19, 2016 7:04 pm

I am a new member who has had chronic lichen planus for the last 8 years. I diagnosed myself from searching my rash online. I have significant hair loss, skin rashes, mouth and tongue lesions, ear canal issues, and eye irritation. I took methotrexate for two years without relief, so I told my doctor I was taking a holiday form methotrexate. I then went through light therapy for 12 weeks with no relief. My doctor has admitted that they don't know what LP is. Very frustrating and itchy.
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Re: Hello & Welcome to all recent newbies...

Postby Jack » Tue Jul 19, 2016 5:19 pm

Hello, I'm new member having just been diagnosed with OLP, I live in Devon The OLP is driving me mad. *wave*
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Re: Hello & Welcome to all recent newbies...

Postby Teflon » Wed Jul 20, 2016 1:39 pm

Hello Jack and all the other newbies! Welcome!

I am really keen on trying to set up some more local support groups - where we meet for a coffee (or something stronger!) chat etc and help each other manage this yukky condition!
We have the makings of one here in Devon already, I do already meet with 2 members (although haven't seen you for a while girls - sorry - been a bit busy!)!

I will try and email a few of you - including you Jack if you are interested - who I know live within easy reach and see what we can do to further this..

Nothing to stop anyone else trying it! I can facilitate putting people in touch with each other if you would like to.
We do not stop playing because we grow old......we grow old because we stop playing!
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Re: Hello & Welcome to all recent newbies...

Postby Maggie » Sat Aug 20, 2016 9:37 am

Hallo,
My name is Maggie and I'm new to this webside. I'm not even sure how to navigate it and where to type my questions and queries. I've been recently diagnosed with OLP after having a sudden and quite florid outbreak in my mouth. A year earlier my dentist noticed a tiny speck of what he thought was lichen planus but it was so little and did not warrant attention. It was stable for a year and then out of blue it became active and started spreading: I could see white lines appearing in new places in my mouth every time I looked; then the skin started blistering and bleeding and my gums went sore and red in 3 places. I was in terrible distress. The Oral Medicine at my local hospital diagnosed OLP and I was advised to use Betamehtasone 500micrograms as a mouthwash, dissolved in 10ml of water , 3 times a day. After a week I was told to stop but the gum problem resurfaced and I am back to Betamethasone: I have been using it now for 14 days and have been told to continue while the mouth is sensitive. I have a few questions and would be very grateful for some feedback:
1. can OLP start so abruptly and in such a florid way ?
2. has anyone experience of using Betamethasone and if so how much and for how long? I'm worried about the length of use, the side effects and the withdrawal from it. I don't want to use it for too long but also want to use it for a sufficient time. Is sensitivity a good continuing ???
3. does OLP get better? Do the white lines disappear ? My mouth looks awful at the moment, full of lacy lines.
4. I also have a host of other mouth problems such as tonsil stones and geographic tongue, with burning tip of the tongue. My mouth has been sensitive for over the year to the extent that I have been unable to use normal toothpaste or mouthwash. Has anyone got other mouth problems that accompany OLP.
5. Also, all my problems started after a flu jab in November 2014, when I got very sore throat that would not go away for months and an outbreak of spots on my wrists and neck, which ultimately were identified as a possible lichen planus...I've never had such spots before in all my 62 years, neither had I OLP before.
I wonder whether the flu jab could have triggered some immune reaction that has led to all the problems.
I would be grateful for any comments and reactions,
Maggie
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Re: Hello & Welcome to all recent newbies...

Postby Kasha » Mon Aug 22, 2016 12:02 pm

Hi everyone, have just joined. Have LP and going through first treatment (a gel to use first then Dermovate Cream)
Using twice daily, legs arms hands, some I can't even reach! Takes an hour each time, am feeling pretty down at the moment. Hope to pick up some tips from you guys.
Kasha, Northamptonshire
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Re: Hello & Welcome to all recent newbies...

Postby Nifty Nanna » Thu Sep 01, 2016 11:02 pm

Hi everyone,
I've just joined this site and am not sure if I'm really in the right place! I have Lichen Sclerosus as opposed to LP but it seems that the symptoms are almost identical. I have it in the Vulval area - diagnosed by biopsy. The treatment was hormone pessaries followed by hormone cream for a short spell. My GP won't continue with this as he feels it's too risky so I've been managing with sudocreme, Vaseline, canesten and a lubricant called Sylk. They seemed to work for a while but I now suffer from frequent tears & dry skin which can get very painful. I've been interested to hear of the benefits of coconut oil and Aquafor so am going to give them a try. I've just had a flare up of itching & my GP treated it for thrush (?!!!) but did say to go back if it didn't work. It has improved slightly & I'm hoping that the new creams will help me. It is nice to know you're not on your own but sorry that so many of us are suffering!
Sue
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Re: Hello & Welcome to all recent newbies...

Postby mina48 » Tue Sep 13, 2016 3:48 pm

Hello I'm new to this forum. I've been diagnosed with genital Lichen Planus. I use a steroid cream and Hydromol ointment as an emollient. I find this really messy and it stains my clothes. Sometimes wear a pad to protect my clothing but don't know if that's the correct thing to do. Does anyone have any tips?
Mina
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Re: Hello & Welcome to all recent newbies...

Postby may » Tue Sep 13, 2016 11:17 pm

Hi Guys and welcome to the site,

Hopefully you can get some tips and not feel so alone with this horrid problem.
I have VLP and now Olp.
I use a lubricate called Yes website yes yes yes.org which i use as a moisturiser too most times after going to the bathroom. it is organic I found it better than Sylk but as we know what suits one person does not another. check out the website it is for women with vulva conditions . Shock they have heard of lp and ls if you phone them they will send you free samples.
some of their products are now available on the NHS not that your Gp will tell you that !!!
I wash with Emulysfying wax recommended by my gyne you can also put as a mosturiser there!
it is very slippy though can be bit messy but I am used to it now and found very helpful.
I am all over the site i swear by these products for me
As i stopped using dermavate as made me worse not to say i wont use if need be .

also another one called KEY.E suppositries by Carlson. which are vitamine E if you go online you can find reviews from a company called iherb and Amazon take a look.
I have put these things on this site before but cant tell you if they have been helpful as not had any feedback. I still talk about them incase it might help 1 person.
I also buy pure vitamin E oil.
I see sometimes on the site some people have manage to meet up for a coffee and chat you might have somebody in your area . I have not been lucky enough to have anybody in my area .
So have a look round the site hopefully you will get some tips and at least you don't feel so alone.

good luck to you all

Best Wishes
May *wave*
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Re: Hello & Welcome to all recent newbies...

Postby may » Tue Sep 13, 2016 11:19 pm

Ps
I have also used pure coconut oil and found that good too.
May *wave*
may
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Re: Hello & Welcome to all recent newbies...

Postby may » Tue Sep 13, 2016 11:30 pm

ps again,

A Note To Maggie,
About OLP I wonder about my olp and vlp starting because of a malaria jab I had to go on holiday. so agree with you there .
There is a toothpaste called Biotene a tip i got from this site, They do a range mouthwash ect as you are better with Alchol free Boots sell it. or go online.
there are some other toothpastes recommended on this site but forgotten name of them.
Also when I have a out break i found coconut oil or olive oil soothing just swish around worth a try.
Bit of trial and error what works for one of us does not another.
Also they say stay away from Tomatoes pinapple viniger Acid stuff ect and Strawberrys are another.
you might have heard this already but yet again we are all different.

Take care & good luck.
Best Wishes
May *wave*
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