hi everyone I have a very weird question for you I have ET JAK 2 and recently diagnosed with Raynauds syndrome has anyone’s toe nail ever started coming off..I had a episode a few weeks ago it turned really cold where I live and I was very stressed so I was in a lot of pain and I saw my feet turned white, red and purple and the last time I had went and done a pedicure. It was not like that but today it was if this is happened to anyone, please let me know.
toe nail coming off from the bottom: hi everyone... - MPN Voice
toe nail coming off from the bottom
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Raynaud's Syndrome can affect the toenails. Losing a toenail is a symptom that needs attention. Pain is a warning that something is wrong. It sounds like you are experiencing significant microvascular issues. This sounds like an issue that needs the prompt attention of your MPN care team.
Please do let us know how you get on and what you learn.
I had similar toenail issues. I had been on hydroxyurea for 10 years or so, at a stable dose, for ET. Something happened to me, felt like a very mild cold. After that the HU was less effective and so the dose of HU was slowly increased. Over the next year my toenails started growing out differently, only firmly attached at the very start of them. A few months after that my finger nails began to grow out very thin, brittle and with ridges in them. Raynauds in my fingers became frequent, but not in my toes. My hematologist (not a MPN specialist) had little to offer for why this was happening. HU is known to cause nail issues so I assumed that was the cause but it was not. After some other medical issues I saw a rheumatologist who told me the odd nail growth and the Raynauds were related to an autoimmune issue, but couldn't put a definite diagnosis as to which. The Raynauds got worse still after starting Pegasys.
Hi, I have JAK2POSITIVE ET and Raynauds also. Last year I also lost my big toe nail, overall it took about a year to finally lose the nail and new one to grow back completely normally. My hair has dramatically thinned recently after about 8 years of taking Hydroxycarbamide .