Nausea

[katiewalsh]

Hi. Just wondering, has anyone experienced nausea from the MPN (before starting meds)? I've had nausea after eating for the past 1 1/2 years. I have ET and some early MF and spleen only mildly enlarged. I wasn't taking HU until a few weeks ago. I asked my doc who said it shouldn't be from MPN. Thanks. Katie

[Twinkly]

Yes well I reckon your doctor needs up dating !! I have exactly the same as you ..same symptoms ..iv been vomiting for weeks ..it's often at night ..maybe 3 times ..with much wind and pain ,,so iv been moaning loudly ..it worked ..I'm now having a medication .The specialist at the cancer unit prescribed it ,3 a day to start with ..now I cut it down to 2 a day ..it's called .metoclopramide,10 mg tablets ..( like little miracles they are ) ....I was having drinks in little bottles to keep up my calorie intake ,,but now I'm eating again ..much better ..so don't you suffer ,get the doctor to check it out for you ,,,twinkly. Xxxxx

[katiewalsh in reply to Twinkly]

Hi Twinkly. Thanks for writing! Did you have those problems before you got on the meds? What's your diagnosis. Katie

[katiewalsh in reply to Twinkly]

Forgot to thank you for info on what med to get.

[beetle]

I also use metochlopramide when nauseous- originally from migraines. A useful anecdote for that drug is that it increases the absorption of paracetamol and l use it now to help the paracetamol on its way to relieving headaches (I don't take it on a regular basis)

I was not nauseous with ET initially so maybe Twinkly's recommendation will help you if they cannot find any other cause. As my haematologist always says, we get a bizarre selection of symptoms with this group of diseases!

[katiewalsh in reply to beetle]

Bizarre is the perfect word. I feel like I'm bizarre with two rare disorders. Fortunately one is less serious. Glad you're avoiding dreadful migraines. They're nasty.

[Twinkly]

Hello Katie . Iv never ever had vomiting before this recent events ,,

I was diagnosed by prof green ( my racing greyhound ,,hes always on the run ) at addenbrooks cancer unit at Cambridge ..4 years ago ..PV. With Jak poss ....I was very ill for a while. Had venesection regularly ..many times ,,3 bone marrow tests ,,now I'm taking ruxolitinib ..6 a day ,I have recently progressed to having the MPN ..diagnosed ,my spleen is just starting to grow a little bit ..but on my good days I'm great !! Get a bit tired ,but I still have kennels with my show dogs ,,very demanding all the days .even Christmas ,no holidays for me ..busy life ,, Twinkly. Xxx

[katiewalsh in reply to Twinkly]

Thanks for responding. Glad you have your dogs. They're probably great for TLC. Katie

[Hidden]

Hi Katie

I had nausea at diagnosis too but I think it was associated with the enlarged spleen I had at the time, I had had a portal vein thrombosis and had ascites (fluid build up).i experienced nausea and had very poor appetite and was very swollen. After treatment for the thrombosis and ascites my spleen returned to normal and nausea etc disappeared. Not had any nausea with the ET since.

Echo what Twinkly has said about metro loperamide. I have another gut condition nothing to do with ET and have taken it for nausea I have sometimes experienced and found it very effective. I would go back to your doc or do you have a haematologist you could speak to about it who might understand better? If it's affecting your quality of life , it no fun I know, they should take it seriously check it out and explore what they can give you to help.take care Lizx

[katiewalsh]

Thanks a lot Liz001. Glad you're feeling better. I think (?) my MPN doc is good but I also have other health problems it might be from. Be Well. Katie