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OLP and my experience.

Posted , 9 users are following.

lou58281
lou58281

So delighted to have found this forum, you have no idea. 

Been suffering OLP since 2014, diagnosed 2015, didn’t start treatment until March 2018, mainly because I was hoping it would go away. 

The professionals don’t seem have a clear understanding about maintaining it, I know it can’t be cured. I feel mine came about by a wisdom tooth extraction or it could be the fillings in my mouth, or stress in my life at one particular time, I’m unsure. 

I’m currently going to Dublin Dental Hospital. They didn’t take any blood tests which I hoped they would because I was at my wits end, but they were very thorough. 

I came out with a 3 month supply of steroid mouthwash, Bentelan Effervescent 0.5MG. This cost €80 roughly and if I need more I have to go back. Plus the cost of the appointment being €70 roughly. I’m at the stage where i’ll Pay anything to sort this. 

Ok the triggers for me: 

Probably wine if I’m being honest which I love. Any booze.

Some fish like tuna. 

All fruits. Mangos (my favourite) and satsumas being the worst probably all of them.

Crisps.

Ketchup.

Salad cream.

BBQ sauce. 

Vinegar. 

Anything spicy, I just stay away. 

This is all I know. There’s no clear diet plan for this disease and I would give anything for one which I could follow. If you have any ideas? 

I’ve booked hygienist appointments every 4 weeks for the next few months, then I’m back at the hospital in Sept for them to check. I’ll use that opportunity to ask about the fillings, if this disease continues to control me. 

I have to be honest I’ve not stuck to a diet plan but I’m doing that now alongside the steroid mouthwash. I had a scare yesterday thinking I’d VLP I think it’s called but I think it’s a false alarm.

My mood is quite down but I’m trying every day to be positive as it’s not life threatening it’s just life changing. My smile is hidden because my gums bleed on a daily basis and my teeth have discoloured but hopefully working with the hygienist will improve that.

This is happening. I personally feel there should be a foundation set up for this disease. There isn’t much knowledge and understanding about it and research needs to be done because it’s life changing.

You can’t go out for meals, I’m going to Thailand in June for two weeks but it’s my favourite destination and I don’t want this disease to beat me.

You guys, and I, the people that are suffering, are the only ones that seem to have the best solutions or attempts to keep this disease at bay. I’m delighted to find this forum.

Thanks for listening, oh and tomatoes are sadly my new devil. 

0 likes, 23 replies

23 Replies

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  • mary_pooh
    mary_pooh lou58281

    Posted

    Bless you I have chronic olp vlp and LP on scalp n patches on body as you say we are left to try to sort it out ourselves it's disgraceful ! I'm following vegan diet and can only eat mushy food sugar n caffeine are also no no's ! I get so worn out with this but keep positive we must. I only drink water and chicory instead of coffee if I dare to have say a bit of pudding with sugar in or gluten my mouth is red raw within 24 hours x

    • lou58281
      lou58281 mary_pooh

      Posted

      Thank you for replying, you sound like you’re having a really hard time with it. The steroid mouthwash is the only thing keeping my mouth sane. 

      Started cutting out meat like you, and thinking more about everything I put in my mouth. 

      I feel for you with mushy foods etc but maybe one day this will go away. I wish you well. 

    • mary_pooh
      mary_pooh lou58281

      Posted

      Yes it's not good but after spending a week in hospital with stomach ulcer n hiatus hernia I came out and thought how lucky I was when you see so many people with terrible problems !! I count my blessings and stay positive that we will all overcome this flipping annoying LP ! I'm used to mushy food it's better than trying to eat hard stuff !! Take care xxxx

  • some80778
    some80778 lou58281

    Posted

    I've gone gluten free, and I avoid most things that are considered nightshades.  That all seems to have been helping, as I have been reducing the amount of methotrexate I take each week.  I'm currently at five 2.5mg tablets/week.

    I'm sure you have the Googles, but nightshades include peppers, tomatoes, and potatoes (believe it or not).  Personally, I've never been affected adversely by potatoes, so I generally just avoid anything that is highly citrus or acidic like a lot of fruits :-(, tomatoes, peppers.  Generally, if they're cooked I'm okay.  I don't know; it's just trial and error mostly.  Long story short, no me gusta!

    • maria17676
      maria17676 some80778

      Posted

      Hello Some  ; can you give more details about MTX please, how long you been on,what dosage did you start on that ,and haw long you been taking ,and haw work on you .thanks Maria 
    • some80778
      some80778 maria17676

      Posted

      I'm in the U.S., so I don't know what the protocols or accessibility are in Europe or Britain.

      They are 2.5 mg tablets of methotrexate.  I started out on 9 pills a week in a 24-hour period.  So, 3 pills now; 3 pills 12 hours from now; 3 pills 12 hours from then.  I take the meds every Tuesday into Wednesday  I then went down to 2/2/2.  Now, I'm at 2/2/1.  I've been on this medication since the end of 2013...going on 5 years.

       

    • maria17676
      maria17676 some80778

      Posted

      Thanks for reply.I thought that MTX is taking once a week ,This treatment is for OLP or for skin condition.? Have you got good results with max , or  just keep stable your condition ? Sorry for my English and so many questions 

      thanks maria

    • some80778
      some80778 maria17676

      Posted

      Yep, once a week (one, 24-hour period/week).

      It's OLP

      Meds keep it in check.  And, if I get lazy and don't take it, I definitely notice w/in about a week and a half.

      I think, overall, I'm getting better, since my dosage is now about half what it was.  I'm still afraid to stop it altogether.

    • maria17676
      maria17676 some80778

      Posted

      Thank you ,so your mouth not cleared up completely after so  mamy years on medication.?
    • lou58281
      lou58281 some80778

      Posted

      Nightshades? The word gets used a bit and I assume it means ‘stay clear of foods’. 

      Trial and error I totally agree. I miss bowls of fruit with yoghurt and walnuts on the most. 

      Thank you so much for replying and I hope to use this forum often. It’s like a relief to find it. 

  • di220352
    di220352 lou58281

    Posted

    Hiya I was diagnosed February 2016 with widespread LP and like you I was at my wits end, what I did was look at all of my medications and googled each one and found that Omeprazole (proton pump inhibitors) can be a cause of LP, so I stopped the Omeprazole and within 12 months all signs of my LP has disappeared....thank god.

    I am hoping that it never comes back.

    I recommend you look at any medications that you take to see if they are linked to LP

    Good Luck and I hope and pray that yours will disappear

    • mary_pooh
      mary_pooh di220352

      Posted

      Di how strange I've just been diagnosed with chronic lower stomach ulcer and errosion plus hiatus hernia so they put me on omeprazol two weeks ago which is stopping the acid coming up into mouth but my olp has flared up bad ! I wondered if it was the pills problem is if I stop them I'm in agony !! Think I need to talk to doc xx

    • di220352
      di220352 mary_pooh

      Posted

      Hi Mary

      How strange, when I stopped the omeprazole I told my GP and she said that it is a possibility and she had heard before that Omeprazole has been the cause of LP, there is also a link on the web if you put in the search "can omeprazole cause LP" you will see that there is a lot mentioned, maybe get your doc to change your medication

      Good Luck

      Di x

    • mary_pooh
      mary_pooh di220352

      Posted

      Thanks Di, but I've had olp for 18 months and only started omeprazol two weeks ago so it didn't cause it in the beginning but think it's making it worse now ! I'm seeing the vulva dermatologist Thurs so will ask her she also deals with other parts of body !! Xx

    • lou58281
      lou58281 di220352

      Posted

      Hello there, 

      This is good advice, I’m going to look into what you suggested and investigate further. So delighted yours is on the mend and really hope it never comes back. My Aunt (non blood related) has it, she went on the slimming world diet and it’s not a bother for her now. Funnily enough the slimming world is all about the carbs!!! Which I’ve read you’ve to steer clear of. I’m getting the impression every person who has it suffers differently. 

      Thank you so much for your advice. 

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