Do people with ET have poor appetite?

[Cokopops]

Meal times, I feel hungry, have a few bites and then feel full. Have to force myself to eat a little more but my food usually ends up on hubby’s plate. Just wondering if it’s a symptom of this E T..

[Hidden]

Hi

For me not at all. My appetite hasn’t changed. In fact l have gained a couple of kilos since starting on HU.

[mhos61]

Hi, I have ET, diagnosed 2016, and have been on hydrea since then. My appetite has not been affected.

Do you know if you have Splenomegaly, as this can affect appetite?

This is something that needs to be addressed with your Consultant/ GP.

[Leepee]

Yes does effect me and feel nauseous also get lots of mouth ulcers 😰

[KentBee]

Only lost appetite for first month however have now put on too much weight!

[Wyebird in reply to KentBee]

Ditto😞

[Kimmy53]

That was how my first started I couldn’t eat for about 4 weeks and then started to get pain , scan show I had enlarge spleen and clots in my portal vein and splenic vein

[Bears23]

Have your spleen checked.

[hunter5582]

As mhos61 noted, splenomegaly can cause what you are reporting re. appetite. This is a significant symptom that needs follow up with your care team. Also note that some meds used to treat ET can cause loss of appetite, nausea, stomatitis, mouth ulcers, etc. It could also be that you are experiencing medication side effects. A clue would be when the loss of appetite started. Regardless, follow up with your care team is important.

[Cja1956]

I was diagnosed with ET in 2008. There was a period of time when just the tiniest bit of food caused severe pain but I didn’t know much about this disease and I didn’t connect the dots. I thought it was just stress. In early 2011, I ended up in the hospital for 3 days with a blood clot in my spleen. By then I knew to tell the paramedics that came to get me, because I seriously thought I was having a heart attack, about my condition, so the hospital knew what to look for. I was on HU at the time. I had stomach issues several times after that, but it wasn’t until my doctor put me on Jakafi in 2016, that things started calming down. Now that I have post Et Mf, diagnosed last year, my new hematologist took me off Jakafi , but lately I’ve been having issues with my appetite again. Sorry it’s such a long post for a simple question, but just wanted to share my experience. But, I just wanted to give my opinion that a large spleen can cause appetite loss and possibly the medication, as well. You need to have it checked out.

[soisew]

long replys are what we need . The more you share the better we know what ask our Doctors.

[BloodZero]

I cant stop eating. Its like my hobby.

[MCurlygirl]

I have that issue and doc says my spleen is fine. This d disease has soooo many weird symptoms, then there's the medication, that seems to affect everyone differently.....