Hello everyone.
I was diagnosed with ET couple of years ago and I take Hydroxy and aspirin. I’ve got a strange tummy ache. Not hurting really more uncomfortable and don’t feel hungry much. If I eat I feel full very soon and push my plate away.. I am not losing weight unfortunately, in fact I’ve put on weight since starting Hydroxy. I take probiotics and no problems with bowels. Anyone experiencing this uncomfortable feeling in tummy? Thank you for reading
There are several reasons why you might experience GI issues. While HU can cause GI issues, I wonder if this might be something different. What you are describing sounds like early satiety. This is a known MPN symptom that is associated with splenomegaly. That is not to say that this is what it is. You would need a proper assessment to determine the cause of the current GI issue.
Suggest a call to your MPN care team is in order. This is the type of change in symptom that they need to know about sooner rather than later. While this could be unrelated to the MPN, it is best not to take chances.
Please do let us know how you get on.
Thank you. Ive got an appointment this coming week with haematologist and will mention it. I’ll will let you know the outcome. Regards
Think you need to contact your Gran team sounds like a spleen problem
Ye)s, me too, I take Hydroxy and an aspirin everyday. I am soon full up and cannot eat half as much as I used to. I lost 1 1/2 stone immediately following my first Covid vaccination and my doc was worried and after blood tests I was diagnosed with ET. My tummy often feels bloated and uncomfortable. I often chew an Indigestion Relief Tablet (e.g Rennies) and occasionally a Buscopan which helps. I also find a Fybogel a day helpful too. There are so many symptoms associated with Hydroxy and ET so I find it difficult to know which is causing which. I just try and manage my symptoms as best I can. I also struggle with numb and tingly feet, sometimes very painful at night. Again these are listed symptoms so just manage these too as best I can. Good luck with your symptoms and hope this helps.
Thank you so much for your reply. It helps that I’m not alone with those symptoms. Have you asked your haematologist if it could be problems with your spleen? Good luck to you too
Hi Happydolphin,
1st) I love your screen name!
2nd) Have you had an abdominal U/S to make sure that your abdominal symptoms are not the result of splenomegaly [enlarged spleen] , which is one of the complications of MPN's and causes the very symptoms you and Cokopops are experiencing.
If not, you likely should. I know that for me, it was one of the first things my general Heme/Onc MD ordered along with the bone marrow biopsy, and I was reassured because it described my spleen as being only borderline enlarged, which given my height, weight, and general body type, my H/O MD thought was an over-read.
Better to know than to guess...
Best,
PA
Yes I have same problems, tummy pain and can’t eat much and if I do eat more than usual I have the bloating down left side of tum. My spleen appears to be alright though. I also have recently started having numbness in my left foot on left side . I just put this down to Hydroxy as well as tummy. Had lots of tests etc showing noting thankfully. Oh, I also have severe diverticulitis as well. I think we use have to grin and bear it. Regards Fran
I have numbness on the outer side of my right foot and suffer occasionally from burning itch in soles of both feet
Hi I have experienced just the same symptoms prior to starting Hydroxycarbamide I did eventually start losing weight quite rapidly but when I started Hydroxycarbamide I also regained a little weight though still have little appetite and feel full quickly so I think it is ET rather than treatment..L but interested to hear other’s experiences
I really think it’s worth mentioning to your heamo.
Symptoms? HU Problems? 
Aspirin bleeding problems 
PV and heart problems
HU to Peg Transition Problems - 
Hydrea leading to fingernail problems
