Mouth ulcers for years prior to ET diagnosis any one troubled by them pre hydroxy treatment?

Mouth ulcers for years prior to ET diagnosis any one troubled by them pre hydroxy treatment?

I have had problems with mouth ulcers for many years, but they have become almost constant companions now. At some point it was speculated that I had Behcet's disease, but I thankfully don't have many of the other horrid symptoms that Behcet's sufferers often have other than fatigue. I have also had the ME chronic fatigue diagnosis handed out to me in the past. The ME diagnosis worries me a bit, I know chronic fatigue is very real, but I am concerned that the ME label gets used by some doctors to wallpaper over the "I know something is wrong, but I don't really know what it is?" and this can be dangerous, leading to lazy diagnosis and things being missed. Now that blood and bone marrow tests show I have ET JAK negative and platelets 850 and climbing, I can't help but wonder if the mouth ulcers fit into this somewhere? Having read about side effects of hydroxy that include mouth ulcers, I am having some concerns already as to how I am going to go with this when I get put onto it in about a year and a half's time when I turn 60.

A bit silly of me to worry for the next year and a half though about something that may not happen so I will have to cultivate a happy smile and learn to treasure the "now" a bit more! :-) How's that! Which brings me to another thing...

I have just had a visit to my GP and discussed my fatigue, which is very real and troubling, and we tried to get the sense as to how much of this was the ET and how much may be depression! I guess it is impossible to really know. I am certainly not a "bundle of laughs" at the moment as there is a lot to understand about this ET thing and the impact that it is having on all of life. I am self employed as a potter, so try to work around the tiredness as best I can, but I don't see how I could be employed by anyone else now. It is funny that when the GP mentioned depression, I started to feel depressed, even a bit like I might get tearful if I didn't watch out..., but I still think the majority of my fatigue is caused by sticky platelets, after all I do get a bit giddy and short of breath too... and I think that is more physical than emotional!

I think I may have mentioned in my first post that I was worried about letting people know that I have ET, especially my parents (who are 83). I finally did let my parents know, because I felt that it was starting to get awkward having to often put off visiting them due to tiredness (they are almost an hour by car from here), or turning up to see them really tired. My mother reacted by saying that she had not been a surprise as she had thought something was not quite right for quite some time. It was good to have things out in the open. I am telling a few more friends now too.

Thank you all for this forum, I find it very helpful reading other people's experiences, and would feel profoundly isolated and lonely without it. I haven't commented much as yet, I am such a beginner with all of this that I don't feel I have much to say that is of help, but I am in awe of how many of you carry on living life and making the most of things, and grieve with those who find everything is on top of them.

Kind Thoughts...

OK... I will add a photo! Our cat likes to try out my pots for comfort. This bowl became a favourite of hers as it caught the morning sun and stayed nice and warm!

5 Replies

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  • nice pots - love the colour tones: what a clever and talented person u r !

  • I can't help you with your mouth ulcer question although I do occasionally suffer from them but not unusually so. Nor can I help with the fatigue as I don't really suffer from it. However I do love your pots and especially what is sitting in one of them. Cats always assume that everything is for their use and certainly know how to make the best of any opportunity. :)

  • Hello, sorry to hear that you are having problems with mouth ulcers, and they are something that many people on Hydroxycarbamide do suffer with, myself included, but as you aren't taking that yet I would suggest you go and see your dentist, explain about your ET, take one of our information booklets with you, you can print and download one mpnvoice.org.uk/documents/t...

    this might help them if they don't know about ET. They may be able to find a reason why you are having these mouth ulcers and can then advise you on what to do. Maz

    p.s. love the pots

  • I had ulcers initially when taking Hu. (I kept anbesol by me for ages) l found - don't remember how long after - that it stopped. I think, possibly when my system got used to it. Good luck!

  • Thank you for your kind and helpful comments :-)

    I will have a chat to my dentist when I next see him. I guess that there is probably not a lot that can be done, but I have noted with interest the various things that some people on the forum have tried for Hu related ulcers, and I might try some of them.

    I should have given a formal introduction to the cat when I put up the photo of her in one of my pots.... her name is Nigella Stopit; Nigella as in Nigella Lawson (she is rather glamorous and is given to midnight feasts), and Stopit as in behaviour! She was particularly inquisitive and strong willed as a kitten!

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