Oral discolouration

[beckyluck]

Hi all,

Just wondering if anyone who has ET has ever experienced any black/dark grey patches in their mouth? I have recently noticed I have a couple of them on the inside of my cheek about .5-7 mm (not circular) and I also have a couple of smaller ones on my bottom lip.

I called my doctor this morning and we did a video call, he says the two most likely possibilities are either it’s related to ET or it could be Peutz-Jeghers syndrome, he is referring me to a Gastroenterologist for the later.

I’ve messaged my ET consultant too but I know that one of the best places for information and help is this forum so any help would be gratefully received.

Thanks x

[Swede]

Hi there, well, you have already taken the first steps to get some answers which is good. Now, my husband is a dentist and I work with him (yes, for nearly 20 years!) and we see a lot of different things in peoples mouth. Just to calm you down a bit,99% of the time it is something very benign behind. I can of course not say what you have, I can only say I have not had that problem. I have a very dry mouth at night but have a cream for that so I am sorry can't help you more with your dilemma. Just don't turn to Dr Google, one usually end up upset and get al sorts of negative ideas..... Hope you get some proper answers soon!

[beckyluck in reply to Swede]

Thank you for your reply.

I have had a quick look on Google and shouldn’t have! I have managed to find out that there are about 10 cases of ET patients on Hydroxy (I am) that have had oral pigmentations, am still waiting to hear back from my consultant.

I’m trying not to stress and wait till I see someone.

Thanks again x

[Snagglepus]

Go to your dentist. My mother-in-law (no ET) had a dentist appointment and discolouration seen in side and roof of her mouth.

She was referred to Hospital and the specialist said it was due to the fillings she’s had when she was younger.

[beckyluck in reply to Snagglepus]

Hi

Thank you for your advice, my doctor didn’t seem to think that was a likely reason for the patches when I showed him. But I suppose it is still a possibility until other conditions are assessed and either confirmed or crossed off the list!

Thanks again

[Swede in reply to Snagglepus]

That is called amalgam tattoo and should be measured at every examination.

[Snagglepus in reply to Swede]

The dentist checks her every 6months.

Thanks.

[Susana7]

Hi, I developed white lacy patches and ocasional very red inflamed patches on my mouth after starting Pegasys interferon treatment. It was diagnosed as oral lichen planus, an autoimmune condition, very likely arising because of the interferon. I was referred to an oral medicine clinic and now manage the condition using a steroid mouth wash when it flares up and regular dentist check ups. It does not sound like what you have but it is another example of how our treatments can have other weird side effects, such as mouth issues. I hope your oral issues will either go away or be manageable. Susana

[beckyluck in reply to Susana7]

Hi

I have been on the Hydroxy for over two years and haven’t had any issues with it really. But yes I agree how treatments can have various side effects on people in different ways.

I hope your condition is ok and under control, it doesn’t sound very pleasant.

Thanks for you message

[GarciaB]

I’ve had them in the corners of my mouth. They come and go . Almost like a bruise from biting my lip. I read the hydroxy insert and it lists mouth lesions as a side effect

[beckyluck in reply to GarciaB]

Thanks for your reply

[Windy51]

sorry i dont know about this that you have hope it clears up for you

[beckyluck in reply to Windy51]

Thank you

[hunter5582]

I did experience oral discoloration while on hydroxyurea, though in my case it turned my tongue just as white as snow. Started with an apparent case of thrush (not uncommon with HU) - but it did not go away until I discontinued the HU. It actually looked just like a condition called leukoplakia. I was concerned because HU can cause oral carcinomas, so was glad to get off the HU. (Note - I doubt that is what you are experiencing - looks different as I understand it). I did experience some permanent discoloration and now have a condition called geographic tongue. This is benign.

It sounds like you have a good plan in place to find out what is going on. I would just add the possibility of an uncommon reaction to HU to the mix of what you assess. It can be really hard to sort out what is the MPN, what is the HU, and what is something completely unrelated. Hope you get it sorted out soon.

Please do let us know what you find out. All the best to you.

[beckyluck in reply to hunter5582]

Thank you for your reply, I have around 7 tiny grey patches on my bottom lip and 3 big black/grey patches just inside my cheek, and as you say it may be completely unrelated to ET or the Hydroxy, hopefully I won’t have to wait long to find out as I am a little worried!

Thanks again 🙂

[hunter5582]

Was out looking at some other items and came across this citation. Do not know if it has anything to do with what you are experiencing, but thought it might be of interest,.

ncbi.nlm.nih.gov/pmc/articl... .

Hoping you get answers soon.

[beckyluck in reply to hunter5582]

Thank you for passing this on, will have a read over breakfast! 🙂

[JaK2ET]

Have you found out any more about the cause of your oral discolouration?

[beckyluck in reply to JaK2ET]

Hi, I am still waiting for an appointment to see a Gastroenterologist, i’m only doing phone consultations with my Haem consultant and the doctor feels the Gastro doc would be able to discount Pritchard-Jaghers Syndrome which is what he seems more concerned about.

Thanks for asking 😊

[beckyluck in reply to beckyluck]

Peutz not Pritchard, silly autocorrect!!