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anyone with oral lichen planus?

(18 Posts)
happyjack12 Tue 11-Sep-18 12:40:26

been treated for a few weeks for a white tongue with anti fungals but no change at all. have developed pitted, grooved nails and GP thinks it could be lichen planus...have been googling and now feeling even crapper....anyone out there with their story?
thanks

OP’s posts: |
Kaz1066 Fri 12-Jul-19 15:23:42

Hi just wondered if you had any advice on oral lichen planus. I have it on my front gums and the more I read about it the more anxious I get, thanks in advance

Bookworm84 Tue 03-Sep-19 22:15:29

@Kaz1066 sorry to see you've not had a reply. I have it on the sides of my tongue and on the buccal mucosa. Have you been to the dental hospital? Ask your dentist to refer you. They gave me difflam mouthwash to use when it's painful which really helps. I also have a steroid mouthwash if needed (never used it). Also, I was advised to switch to a toothpaste without Sodium Laureth Sulfate. Most Sensodyne toothpastes fit the bill.

Bookworm84 Tue 03-Sep-19 22:16:40

@happyjack12 Hope the above helps you too. I've not had much trouble with it since fingers crossed.

Kaz1066 Wed 04-Sep-19 07:38:11

Thanks for your reply. All the info helps. I’ve been to hospital for biopsy and await the results end of September. I’ve found a good toothpaste with no flavour or sls called oranurse. I’ve tried steroid mouthwash and it does help but doesn’t get rid of it totally but not been able to use this recently due to biopsy. Used warm salt water rinse and the lichen has not got any worse nor better. Just hope after results I can get a bit more advice.

Bookworm84 Wed 04-Sep-19 15:04:45

They said to use the steroids but I've read in a couple of places that it can come back with a vengeance afterwards. Let me know if you try it. Would be good to see if it works. I still have white patches. Not sure if using steroids gets rid of it completely. Hope biopsy okay.

Kaz1066 Wed 04-Sep-19 15:58:33

If it is lichen planus I don’t think anything gets rid of it although mine has died down now on my back.

My mouth has got s tiny bit worse since not using steroids but as you say I think they just temporarily calm it down. It’ll be interesting to see what doc says. If it wasn’t for the fact that it’s above my front teeth I don’t think it would bother me too much. Hope yours keeps at bay. Can you eat all foods or does any trigger it?

Bookworm84 Thu 05-Sep-19 21:08:45

@Kaz1066 Mine was diagnosed in June 2016. Definitely got a bit worse after the biopsy as the area was so inflamed. I can eat pretty much anything. Citrus fruit can sometimes cause a bit of pain. So can fizzy drinks, although I very rarely drink them. How about yourself? Have you been given any advice on drinking alcohol? I've more or less given up but was told if I wanted to have the occasional drink that would be okay.

Kaz1066 Fri 06-Sep-19 07:04:17

I’m going to keep a diary of what I eat as my mouth is worse today. I think it gets much worse with anxiety and worrying about it 😞 I don’t drink alcohol and fizzy drinks anyway and I’ve stopped drinking tea. Green tea is supposed to be good. I’m just fed up of having a horrid mouth 😞

ourkidmolly Fri 06-Sep-19 07:10:03

My mum had it terribly for 5 years but it's completely healed up now.

Kaz1066 Fri 06-Sep-19 13:32:02

Have you got it on your gums? Do you get the burning mouth sometimes?

Kaz1066 Fri 06-Sep-19 13:33:00

Good to know it’s gone for your mum. Did it just go on it’s own or did she cut out foods in her diet and use medication?

Goldrill Fri 06-Sep-19 13:39:19

I have a small patch on my tongue which comes and goes. I get lots of mouth ulcers and pointed it out to my dentist as I thought it was just a really bad one that wouldn't shift.
I don't do anything specific for that but do use sls free toothpaste (corsodyl one which takes getting used to but I feel like it really helps calm everything down).
I use steroid tabs to stick to bad ulcers and the lichen patch, but am not convinced.
Overall, the thing I have noticed most is that the more exercise I do, the fewer ulcers I have and the less the lichen seems to be present. No idea if it's hormones, drying out of mouth or pool water, but they all reappear noticably if I stop training for a bit.

Bookworm84 Fri 06-Sep-19 19:31:23

Not on my gums just side of tongue and lining of mouth (buccal mucosa). Pretty sure mine was brought on by stress so I hear what you're saying about the anxiety thing. Try not to worry, mine doesn't seem to have got any worse over the 3 years since I've had it. There's a good mouth wash called 'Gengigel'. You can by it in Boots. It is specifically designed for OLP and mouth ulcers. Dentist recommended it. Sometimes stings when I use it but definitely helps.

Bookworm84 Fri 06-Sep-19 19:33:18

@goldrill, I think mine definitely rears it's head if I stop running for a while. Think the exercise must help with the stress.

ourkidmolly Sat 07-Sep-19 12:06:31

@Kaz1066
She had all kinds of treatment. She has sjrogrens syndrome and this is a symptom. Eventually it just went by itself.

lyrebird1 Sat 07-Sep-19 18:36:11

My mum has this too and she is pretty much symptom free now. She gets her teeth cleaned every 3 months on the NHS and that helps to prevent it coming back apparently. Not sure why. She pays no attention at all to her diet, and drinks red wine like a trooper!

I have a very dry mouth due to medication and I like the Biotene range of SLS free products. My hygienist also recommended Curasept mouthwash. It has the same stuff in as Corsadyl, but it doesn't stain your teeth brown.

Kaz1066 Tue 10-Sep-19 06:56:49

Thank you for your advice about exercise

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