Posts Tagged ‘Real Life’

Paul has been a regular supporter of the Mouth Ulcers Home Page. He has constantly suffered with chronic mouth ulcers since childhood. The following page summarises his experience over the last two years of specialist treatment (or being put through the mangle).

I must have tried just about everything to be free of mouth ulcers over the years, but all really to no avail. I am currently seeing a professor of Oral Medicine at Guys Hospital, London as the ulcers I get are beyond a joke. Thing is when I get them I feel really run down, tired and drained with them.

I have suffered with them since I was a kid. They have done blood tests (all normal apart from a little low in iron I think). For ages I have suspected all sorts of foods, such as salt & vinegar crisps (these seem to bring ulcers on definitely!) err.chocolate, coke, tomatoes…you name it really, but I have no real idea. Apparently they (NHS) don’t test for food allergies etc..I daresay if I waved a few £20 notes about it would be a different matter!!

I’ve been visiting Guy’s since pestering a local ENT/dental specialist at my local hospital to do more. It took me quite a struggle to actually get referred to Guy’s actually, for (as you probably know) GP’s don’t seem to be very keen in advancing you to a specialist for mouth ulcers. Guy’s have told me that treatment of mouth ulcers is “bread and butter” to them and they see many, many people suffering from ulcers. Perhaps I could enlighten you a little further to the basic information that Guy’s use and the ‘standard’ treatment plan that they start to administer. The treatment plan, is, I understand, the same for anyone suffering from ulcers and this is how they go about it:

Firstly you are assessed with your condition. They do this by asking you to say the following:-
1)     How many ulcers at any one time do you get?
For me it’s about 3-5 mostly on or under the tongue.
2)     Using a pain score of 1-10, where 1 is mild and 10 is severe how would you rate the average pain?
I usually say about 7-8, which is a high enough score for them to take seriously
3)     Describe the approximate size in mm (they show you pictures) of how big your ulcers get?
Again, with me, they vary, but I guess anything up to 1cm occasionally
4)     They then ask you if you feel it’s affecting your life badly.
I always say yes, really, as I feel so bloody awful with them (not just the obvious pain, but also the immense tiredness and drained feelings I always get with them)

The treatment plan is as follows… the duration of these medications can vary, but they do follow this pattern for most people: 1 x tablet called Betnesol 3 x per day (this is a little pink steroid tablet that you dissolve in a little warm water. You then rinse this around the mouth (generally only when you have the ulcers) and spit out. It’s supposed to act a little like Adcortyl in Orabase – namely that it doesn’t particularly help with the pain, but as it’s a steroid, it’s supposed to help with the healing process. To be honest, I didn’t notice an awful lot of difference. I had to try this for 3 months.

As this didn’t work , next time I went to Guys (after asking me again all the standard questions as above to see if you give any different answers) they put me on a tablet called Colchicine and still told me to take the Betnesol mouthwash as well. Colchine is an odd tablet, that my GP found hard to understand why it was prescribed. It’s most usual application is to help suffers of arthritis. Personally again, I found no real positive effect. This was tried for a further 3 months.

Next time I went they put me on Azathrioprine. As you may have read from my posts on the message board, this is an immune suppressant. There is current research which apparently suggests that your immune system could be acting too hard and destroying healthy cells in your mouth, hence this drug. They calculate how much you should take via your weight. They started me off on 1 x 50mg tablet per day (this did nothing) and then, 3 months later, upped it to 3 x 50mg per day. I weigh about 12 stone and this is really the maximum safe dose. You have to have regular blood tests whilst on this drug as it can affect the liver. I was fine though – mind you, a common side effect is, it makes you feel very sick, so you have to try and stick with it. It takes about 2 months to kick in to you system, but after 6 months again, I found no positive improvements.

The final ‘rung of the ladder’ is to treat the ulcers using Thalidomide. (Apparently it’s used frequently in AID’s suffers who get mouth ulcers to due some medication or something, and it’s supposed to be very successful). You have to have a muscle test first as it can affect the muscles, especially in your finger tips for some reason! If this doesn’t work, then Guy’s tend to say there is nothing further they can do, apart from go backwards and try the other drugs again. I said I wasn’t over keen on Thalidomide as I have recently started a family, and for obvious reasons was told to stay clear of it, if thinking of having more children.

I personally still think it could be food intolerance/allergy related. I have suggested this to Guy’s many times, but each time, they poo poo the idea and say that there is nothing they can do to help in this area (other than you keep a food diary etc.. which I tried but gave up as not getting any positive results from this).

I was suprised therefore when I was referred within Guy’s to the Dietician’s who have told me that people with recurrent mouth ulcers can be helped, hopefully, via a Cinnamon and Benzoate diet. I have never heard of this before and was amazed that they said 50% of suffers they put on this diet improve vastly.
Personally, as I said on the message board, I find this hard to believe, and wonder why…

a)   it isn’t more common knowledge
b)   I wasn’t told about this before, in the past two years?

Anyway, I mustn’t poo poo it just yet, as I am willing to give anything else a try. It’s interesting as it kind of ties in with some ‘suspect’ foods that I have always wondered about – namely the salad cream, pickled onions, flavoured crisps etc..

Got a reply back from the dieticians about posting the diet on the web-site – “The dietary advice is specific for your condition and only appropriate for you. Unfortunately therefore we cannot let it be placed on a website as there is a risk it could be used inappropriately. Anyone requiring specific dietary advice like this needs to be referred to an appropriate centre such as the Oral medicine clinic at Guy’s hospital.” …So very sorry, looks like we can’t put it up on the site – goodness knows why not as it’s only a basic list of foods to try and avoid !!

Many thanks for sharing this story Paul, lets hope the Cinnamon & Benzoate diet works. The progress of which will obviously be most welcome on the message board. Thanks again. October 2002.

Accreditation of original source: http://www.mouthulcers.org/paulsstory.html