I was diagnosed with Essential Thrombocythemiain 2010, have been on Hydroxycarbamide ever since. A bit fed up with the numerous side effects of HU (Peripheral Neuropathy, Actinic Keratosis, Mouth ulcers, Pruritis, Erythromalalgia, flaking/splitting nails, anaemia, tiredness, shortness of breath, ) I looked at switching to Anagrelide but made no change as many 'side effects' seem to be common - or are 'side effects' of ET. (to be fair the last few can also be linked to my Coeliac Disease and Atrial Fibrillation)
The issue at the moment is the one that has crept up over the years and has been mentioned on this forum and I would like to get a few answers to understand its evolution and what we can do about it - pruritis/itching.
My itching has slowly increased over the years - why? It affects my upper arms and back in the evenings - why? in the mornings it affects my front thighs and/ or my chest - why? Sometimes it doesn't happen at all - why? Cetirizine seemed to help for a while but was not the answer so I recently switched to Fexofenadine and if it is helping it is not apparent - why? I have seen it suggested that itching can be a linked to JAK2 - is this true?
Whatever the cause why is there no protocol for ameliorating/controlling it?The Haematologist is only concerned about platelet levels apart from the first few years when he kept checking for spleen enlargement but doesn't check that any more!
I see mention on here of Beta Alanine; if indeed this can help why does my GP or Haematologist/NHS website not advocate it?.
In short it would be interesting to learn a bit more about this phenomenon - how many of us it affects? the degree of problem? parts of the skin affected? solutions if any? or research results - if any? treatments that work - if any (preferably prescribable)?
Answers on a postcard or ten pound note to MPN News
Happy New Year and Happy itching!!
Post cardioversion itching
Warfarin and itching/loss of hair...
do statins prevent strokes or is it myth? Any support to answers welcomed
Should I be chasing for answers?
