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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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  • Mollyjr
    Mollyjr lou58281

    Posted

    After going to a few doctors and dentist, a periodontist helped me. Some of the mouthwashes discolor your teeth but I am now using dexamethasone to rinse that does not. Seems to help. I only use a tablespoon of salad dressing which usually triggers sores which helps. Chili is not good for me either but have you tried rinsing your mouth with water after eating a food that hurts your gums?  I do that until I can use the dexamethasone. They say citrus fruits aren’t good either. 
    • lou58281
      lou58281 Mollyjr

      Posted

      Oh it’s a pickle isn’t it? Discolouring mouth has left me self conscious. I’ve umpteen hygienist appointments coming up which I’m dreading but at this stage whatever works. 

      Fruits for me are the biggest no no and tomatoes and spices. 

      A food diary might be the way forward. Thanks for replying. I wish you well. This is a great forum. 

  • Mollyjr
    Mollyjr lou58281

    Posted

    Oh I forgot. Regarding your bleeding gums, Parodontax toothpaste is excellent and actually does what it advertises... stops bleeding gums. I couldn’t believe it ! Been using it for the past two months. I can even floss now. Once in a while I do get a sore spot but I’ve also been using Dr Collins periodontal toothbrushes (or any really soft toothbrush will do) and brush very cautiously. 
  • lou58281
    lou58281

    Posted

    Thank you everyone for this. I shall reply to each of you in a day or two, traveling at the moment. I’m finding bottled and tap water a nightmare, any suggestions? I love water. Thanks again. I think I’m actually replying to myself 🤷???

  • Heididoll
    Heididoll lou58281

    Posted

    Hi, I have OLP and the skin one too sad Not to scare you or anyone on here but I have had it since 1992 NON-STOP!!!  I am so frustrated that there is no cure or real knowledge of how people get this!  Every post, article or study I ready says that it last no more then a couple of years at most then goes into remission......I call BS on that since I have had it non-stop for 26 years now!  I cannot enjoy eating out with friends or cooking for my family because anything I eat burns or irritates my mouth most days.  I do not like to show my legs, feet or hands as this is where my skin Lichen Planus is located, I get stares and whispers and I feel embarrassed to be in public most days.  I am allergic to Benedryl so that is out, I itch all the time and cause myself to bleed and have scabs...I know totally discussing!  The one and only thing that ever worked for me to get rid of it was Predisone and they will not give that to me because it is bad for your liver!  What is a person to do? Any Doctors out there doing studies, cause I am ready to be done with this!
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