Pemphigus Vulgaris or Lichen Planus

[FindingMyself60]

Morning. Hope you lovely people with a wealth of knowledge are as well as can be.

Sorry in advance for the long post. I was recently told I may have oral cancer which was ruled out swiftly. However, I am now waiting for a biopsy to establish whether I have Pemphigus vulgaris which is a rare long-term condition caused by a problem with the immune system. It causes blisters in the mouth and on the skin. It can be very serious, but treatment can help control it.

Or

Lichen planus a rash that can affect different parts of your body, including the inside of your mouth.

I have had ulcers, all around my mouth and tongue and tingling lips now for over 6 weeks and on a fluid diet. So naturally losing loads of weight and never feeling like I have had a good meal.

My biopsy isn’t until 30th November. The delays are mainly due to there being a national shortage of Oral Surgeons.

I am at my wits end with the pain I am in day and night. Guess having Fibro adds to the pain.

is there anyone out there who can give me a solution as to how to deal with the pain. I have tried all the usual pain relief to numb mouth and tongue but it all really stings and burns my mouth and lips.

[Bananas5]

Fentanyl patches worn on the skin?

[FindingMyself60 in reply to Bananas5]

Thanks Bananas5. I used to be on Fentanyl patches however I could not function at all whilst on them. They also gave me a rash. However do agree they are amazing at reducing pain.

[Bananas5 in reply to FindingMyself60]

You can ask for the non allergic ones.more expensive so not usually given

What dose were you taking?

x

[Welshcatlady]

Hi, I have oral Lichen Planus and I see the consultant at the dental hospital in Cardiff, he prescribes Benzydamine Hydrochloride 0.15% Oralmucosal spray and Betamethasone 500mg Soluble Tablets which I dissolve in 10-15 ml of water for use as a mouth wash. You should be able to buy the spray over the counter as Difflam Spray. However, I don't know if it would be any good for you if you don't have Lichen Planus and it is Pemphigus vulgaris. I also get a dry mouth from the meds I take and find if it gets very dry that aggravates the Lichen Planus.

I would have a word with your pharmacist, and ask him if the spray and the tablets would be helpful if you have either condition.

Hope you can find something that will help you soon.

[FindingMyself60 in reply to Welshcatlady]

Thanks Welshcatlady. until I know which condition I can’t have any meds. Although the consultant told me to get Difflam mouthwash, which I did get however due to the ulcers in my mouth and my tongue. The Difflam burned my mouth so I stopped using it.

I’m pleased to hear you have a treatment plan. Can I ask do you have normal feelings in your mouth once you are on a treatment plan or do you still have metal like taste in your mouth. I know we are all different and I don’t know what I have yet. Also how long after taking meds did you see a change?

[Tedy in reply to FindingMyself60]

I have oral lichen plans and after using numerous medications, the best for me is warm salt water. Can sting a little but worth it.

[Welshcatlady in reply to FindingMyself60]

The Lichen Planus is always there, but it isn't always sore, so I use the meds when I have a flare up, and they do help immediately, but obviously wear off after time and I have to use the meds again, flares normally last only a few days for me, thank goodness, but different foods trigger the flares too, eg curries and other spicey foods, so I try and avoid them. Cold natural yogurt helps soothe it too.

I occasionally get funny tastes in my mouth, but hadn't connected them to the Lichen Planus, but they just come and go.

I hope you manage to get relief after you see the consultant, I understand how painful it can be.

[FindingMyself60 in reply to Welshcatlady]

Thank you for your information,

[BottomleyPotts50]

Hi there I have something similar called geographic tongue. It looks awful feels awful to the point at times it’s sore to even talk. I dread eating nowadays as anything seems to set it off. I have large lesions up and down my tongue, along the sides too.

My dentist was worried it was tongue cancer but decided no it was geographical tongue instead, I have a mouthwash called Difflam which is prescribed but you can buy it over the counter. It helps immensely numbing the pain.

Hope the above helps in some way.

[BottomleyPotts50]

oh and I was told to water the solution of Difflam down maybe that’s why you’re finding it too strong? Try using a 15ml mixture of half water half Difflam.

[FindingMyself60]

yeah I do water the Difflam down and it’s ok when I use it however stings like crazy after.

Yes it’s awful living with tongue sores and lesions. I haven spoken properly or eaten for over 5 weeks. I’m come to the point I don’t want to eat but know I have to.

I would never have imagined to have such a debilitating condition on top of my fibromyalgia

[Blearyeyed]

I have Recurrent Aphthous Stomatitis Syndrome which is a rare condition causing a particular type of ulcers regularly in my mouth. It sometimes causes Lichen issues.

At the moment , while you can't take medication , you can try to drink green tea , warm or cold ( any unsweetened flavour) and make up a green tea with no flavourings to use as a mouth wash , use it when your mouth feels painful and after food.

Get a very soft toothbrush and a natural toothpaste at the moment because brushing too hard adds to the pain and causes more ulcers , that is my dentists advice. Warm salt water washes can help but they will sting for a little while when you do them.

Try to eat regular portions of probiotic natural live Yoghurt with a little Manuka honey through the day , because the cooling live yoghurt helps reduce the risk of you getting fungal issues in your mouth too. The combination gives great relief to the ulcers.

Drinking the recommended amount of water is very important, standard doses of Paracetamol and Vitamin C through the day can help. Avoid sugar and acidic foods .

If you haven't had any you need to request some vitamin blood tests from your GP or dentist. Vitamin B 12, Folate , Ferritin/ Iron and Vitamin D are the ones to request along with a check for Coeliac if you haven't had one. Borderline Low levels or Deficiencies in all of the above nutrients can trigger the development or a flare up in many less common oral problems , especially ulcer conditions , and it won't heal quickly without dealing with these nutrient issues.

Don't take supplements for 5 days before tests for accuracy, but do eat gluten for two weeks before a Coeliac test or you will get a false negative.

Request your results because your GP will say they are normal if they are still low or borderline, but the low levels need addressing with supplements and diet changes too to prevent them getting worse.

After nutrient tests you would benefit from taking a combined supplement after food , and any oral supplements you might have found you will need from the blood tests , especially if you can't eat properly because low nutrition can make all your health conditions worse , especially in the Winter.

Hope they help you soon , it is awful having to deal with constant mouth pain .

[FindingMyself60]

thank you. Your advice is spot on and exactly what my consultant has advised until I have my biopsy.

[shaughnna]

I get blisters on my tongue, however I am convinced that it is due to two broken teeth (and I clench my teeth at night).