Hello
First time posting. I was diagnosed with Essential Thrombocythaemia approximately 12 years ago.
I take Hydroxycarbide and Clopidagrel daily and have had no problems until around 6 months ago.
My platelets are stable but I have severe arm,leg and back pain.
GP has done various tests and can’t seem to get to the bottom of what’s causing it so I’m clutching at straws and wondering if any other Essential thrombocythemia (ET) sufferers have experienced this.
Thank You.
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Hi @Kate1960 welcome to posting on our forum.
I have another blood cancer and do not have the symptoms you have, but just a thought that if your GP cannot get to the bottom of your symptoms then perhaps a referral to a or your haematologist might be the next stage, I don’t know.
I hope others can be more help.
Please do let us know how you get on and be kind to yourself
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Hello @Kate1960, welcome to the forum. I’m glad you found it, although being diagnosed so long ago surely makes you an expert! You must be doing something right to keep your platelets stable after 12 years.
Really sorry to read of that severe pain, it sounds a bit like after I was diagnosed last year with a similar but different Myeloproliferative neoplasms (MPN) to yours, Polycythaemia vera (PV), and was settling into taking daily hydroxurea which made my back really ache. My haematologist was kind of blasé and said I was likely sensitive to the chemotherapy, which obviously didn’t help with the pain.
I also noticed old historical injuries such as tendinitis began aching again after I started hydroxyurea, like they’d returned after healing years before. Really annoying. All these aches and pains have passed for now, but I dread them coming back.
What does your haematologist say? I’d be inclined to tell them about the pain, it sounds horrible and intrusive. If they’re a good doctor they’ll not want you to be experiencing any pain and can check for what is causing it. What painkiller would your haematologist suggest?
Do you have loved ones you can offload about it all to, or advocate for you with your doctors when you can’t? So sorry to read you’re living in pain, @Kate1960. Let us know how it goes.
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Hi @Erica.
I am seeing my specialist nurse tomorrow for a face to face appointment(first time since lockdown) so I’ll speak to her about it and hopefully she can help because it’s really wearing me down.
I’ll keep you updated and thank you for your advice.
Take care.
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Hi Duncan.
Firstly thank you for your reply. I consider myself quite lucky that my platelets are stable most of the time and up until recently my life has been pretty normal but the aches and pains are wearing me down.
I have an appointment tomorrow at haematology so will discuss while there.
Im fortunate I have a great support network and my hubby will be with me tomorrow.
Thank you for your advice.
Take care.
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You’re welcome! I can empathise with feeling worn down by these disorders. Glad you’ve got your husband supporting you—a problem shared really can feel halved in my experience.
Let us know how it goes tomorrow and what’s suggested to help with that pain. Hopefully it goes smoothly, keeping my fingers crossed for you 
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