MPN Commuity
Diagnosed in 2020 with PV Jak2+ and am currently on HU 500mg 7 days a week.I live in US and am under care of world renowned Dr Tefferi of Mayo Clinic Rochester Mn. My numbers remain quite stable with Platelets in 325 to 390 range. White blood counts remain a bit on high side but my Doctor does not seem concerning.My question is I have some mild neuropathy in my feet.Does anyone experience this? Any suggestions please. Thank you. Ridenez
It is a bit hard to say what exactly is going on. I did get a burning pain n my feet/toes when I was off aspirin. This s a microvascular symptom we can get with PV or ET. It resolved when I went back on aspirin.
Peripheral Neuropathy is a neurological symptom. It can occur independent of the ET. Peripheral Neuropathy is also a potential side effect of some medications (e.g. hydroxyurea).
Hopefully your neurologist and hematologist can collaborate to help figure out what is going on.
Hi. Diagnosed with ET in 2020, also on Hydroxy. I suffer from peripheral neuropathy on my left foot and leg. My haematologist prescribed Amitriptyline. I does help but makes me feel sleepy sometimes. Better than the pain in my opinion. Good luck!
hello from the uk! Have you asked your consultant? Is it pain or numbness?
I had peripheral neuropathy 10 years ago - not connected with PV but a side effect of an antibiotic called Nitrofurantoin. Nasty stuff.
My consultant initially diagnosed me with erythromelalgia which can be connected with PV but usually accompanied by redness.
Hope you get it sorted. Louise 😊
Hi Ridenez, I had numbness and heavy feeling in my arms and legs soon after I was diagnosed with Jak 2 unspecified MPN (likely ET) (platelets at that time were around 600). I was sent to a neurologist who concluded it was not a neurological condition. After I started Peg and my platelets started decreasing those symptoms went away. I would think a referral to a neurologist would be in order to at least rule in or out whether it is a neurological condition or whether it could be related to your MPN or hydroxy,
I was diagnosed with JAK2-positive PV back in 2015 and was on HU until I recently switched to run/Jakafi. I've also experienced what feels like neuropathy in the toes of both feet: abnormal sensation, but not quite numbness. One doctor suggested that it might be caused by micro-clots in foot capillaries. It doesn't seem to be getting worse.
Weight gain on Hydroxy anyone?
How are teachers in US managing their MPN and full-time employment?
Just diagnosed with Essential Thrombocythemia
