Hi, I’ve had a recent diagnosis of Essential Thrombocythemia and have been prescribed Hydroxycarbamide. I have been on them for four weeks and have constant diarrhoea, it’s so bad I can’t eat if I’m leaving the house. Has anyone else suffered with this? Will it get better? How can I counteract this? It would be great to hear from anybody in the same situation.
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I am so glad @RedPanda that you have found us and joined our forum.
It sounds as if your constant diarrhoea is really debilitating and miserable for you.
I wonder if you have a specialist nurse contact or your consultant or GP that you could ask these questions of as they need to know about your side effects and they know your whole medical history.
Everyone is very individual and unique.
Others might be able to share their experiences for you.
Look after and be ever so kind to yourself.
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Hello there @RedPanda, welcome to the forum. Sorry to hear of that grim diarrhoea, I really feel for you. I hope you’re able to keep liquid down at least. I remember having terrible traveller’s tummy in India and the relief from being able to keep down a bottle of Coke again!
Unfortunately, digestive issues are meant to be pretty common with hydroxycarbamide/hydroxyurea, according to my haematologist and from what other folks on the forum who take it have shared.
What you’re experiencing sounds worse than what I’ve heard others have noted on here. MPNVoice research states that abdominal symptoms can be linked to hydroxyurea: Hydroxycarbamide – MPN Voice
Occasionally I get stomach issues from taking daily hydroxyurea for Polycythaemia vera (PV) (a similar Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET)), but nothing like what’s happening for you. I’d tell my doctor if mine was as frequent as yours.
Perhaps best to check with your doctor about ways to offset the stomach issues, as they know you best and the forum can’t offer medical advice. See what your haematologist says—you might get to have a break from the hydroxyurea while your digestion settles down, or have nutritious foods recommended that are easier to eat.
Do please keep us posted about how you get on @RedPanda! Have a look around the forum too, you might find others have posted about similar stuff. Do keep hydrated!
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Hello @RedPanda sorry to hear you are having this problem with HU - it can cause upset tummy especially in the early days - but what you describe really needs to be chatted about with your consultant or CNS so they can assist hopefully you have a contact number for your CNS - let us know what they suggest
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RedPanda Sorry to hear that you are having nasty side effects to Hydroxycarbamide. I had different side effects and eventually had to change medication. I think it would be best to talk to your consultant,GP, nurse or maybe even your pharmacist for advice. Hopefully it gets sorted soon. Best wishes. Liz59
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Dear @RedPanda,
Welcome to the forum, I am so glad you found us!
I am sorry about the side effects you are experiencing, I just came to echo what has already been said here. You absolutely need to report this back to your team as soon as possible. You should have access to a 24 hour support/help line? I strongly encourage you to ring through and explain your symptoms especially before the weekend. It is really important to get this resolved before you run in to other problems like dehydration.
Please do let us know how you get on.
Best Wishes,
Heidi (Support Services Nurse)
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Hi, thank you to everyone who responded to my previous message. I have spoken to the myeloid specialist nurse who says to just take Imodium and continue until I have a review in another 2-3 weeks. I have to trust what they say and hope this will get sorted in the end. Thank you again
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Hi @RedPanda great news that you have spoken to your myeloid specialist nurse.
Please do let us know how you are getting on.
Look after yourself
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