I've been on hydroxycarbamide for ET since January. The numbness occurs occasionally and leaves after around 30 mins. I'd be keen to know how common this is and what your specialist has done about it.
My dose is currently 5 x 500mg and 2 x1000mg per week. Platelets are back to normal (under 300,000).
"Tell your doctor immediately if any of these rare but serious side effects occur: mental/mood changes (such as confusion, hallucinations), seizures, shortness of breath, chest pain, persistent nausea/vomiting, severe stomach/abdominal pain, dark urine, yellowing skin/eyes, numbness/tingling of arms/legs, change in the...:rxlist.com/hydrea-side-effe...
HU can cause peripheral neuropathy and other adverse effects.
online.epocrates.com/drugs/...
This s not to say that HU is the cause of the numbness you are experiencing. There can be other reasons. One clue would be when did the numbness begin? This is something worth reviewing with you care team.
Could it be Raynaud's?
I expect that would be something 222Bobby would need to rule out with her care team. Really hard to know. Hopefully it will get sorted out ASAP.
Hi, I have this and recenty under a Rumatologist. They think it's Raynauds but will still investigate as not much information available definitely update your Heamotologist and GP.My hands tingle when I exercise even walking and sometimes sitting.
It's at it's worse in the cold. They go white then black and throb/tingle when I warm up. I sometimes have a mild version of this during exercise.
I have some symptoms in my feet too. Obviously can't see what they're doing but do sometimes seek numb followed by cramp. Also worse in the cold.
My Hematology said the tingling can occur but very very rare, my next follow up is Sept and intend to ask questions.
I have been on that same dosage since November 2021 and it has hardly brought my platelets down at all. I have also developed peripheral neuropathy so my haemo has discontinued the medication for now. The numbness could be an early indication of PN. Worthwhile discussing with your specialist.
Trials
A month into Pegasys, Australia …
myelofibrosis
Tilt Table Test
Pegasys - possibly closer to slowing progression than anything else?
