Polycythemia Vera and stomach issues

Hi all, I’ve just been diagnosed and am having awful issues with my stomach. It’s chronic acid and bloating and the wind is so bad !
I’ve read that the rise in plasma histamine can cause this, so I am trying the recommended treatment antihistamine along with ppi .
Do any of you suffer with stomach issues, mine just doesn’t stop burning all day.
I’ve tried all the usual diet adjustment and it’s still the same .

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Hi @Jaffacake

Firstly, welcome to the forum and thank you so much for posting.

I have Polycythaemia vera (PV) and I’ve recently noticed my weight has escalating hugely over past few months that I really can’t explain why… Ive never been a huge exerciser or a heavy eater and nothing has really changed in my routine or diet… but I have wondered if it was Polycythaemia vera (PV) related but been in denial but seeing your post may bring some confirmation .

Everything I’ve read and the regular medication treatments linked to Polycythaemia vera (PV) have side effects of losing weight so I’ve been proper confused.

I have a haemotologist appointment on Friday and my weight will most likely be a lead topic of conversation so if you’re not sure I’ll be sure to ask not just for me but for your symptoms too and get back to you if you don’t get an answer beforehand.

You’re definitely not alone with this and hopefully we get some answers soon… before it’s an annoying thing added to things we have to deal with amongst everything else.

Be sure to keep in touch :slight_smile:


Thank you so much for your reply. I would be interested to know what is going on also . Good luck with your appointment x


Oh @Jaffacake a great big welcome and I love your name.
I cannot help with your side effects, I have another blood cancer, but what I have learnt is that it is worth keeping my medical team aware of all my side effects, the severity of them and the effect of them on my daily lifestyle.
They might say that they are normal or they might have some thoughts on helping you perhaps with medications.
The main thing is that you look after yourself and please let us know how you get on.


@Jaffacake So an update

Regarding weight gain… it’s most unlikely to be related to Polycythaemia vera (PV). Just age, diet, exercise and the usual

I did ask about bloating and they said unless it’s your spleen again unlikely to be Polycythaemia vera (PV) related.

Sleep issues can be related to routines, hours of sleep, quality of sleep but of course Polycythaemia vera (PV) is connected with fatigue which is always going to mess your sleep about.

Apologies as even writing this I feel it doesn’t provide the answers you wanted or and help to remedy them.

The fight continues….


Yes I do have a moderately large spleen and liver. Thank you so much for your reply xx


Definitely worth reporting that to your medical team if they aren’t aware of it already


Good morning @Jaffacake. I can see that @Rammie18 and @Erica have already welcomed you to the forum. I hope it has helped to share experiences with @Rammie18. When is your next appointment so that you can discuss your concerns with your consultant?

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