Newly diagnosed

[Anne2751]

Hi, I have recently been diagnosed with ET jak 2 positive. I am taking Hydroxycarbonide 500 daily. After 3 weeks my hair has started to come out in places is this normal . I also have factor V Leiden blood disorder and wondered if anyone else have the two together. Anne

[Mazcd Partner MPNVoice]

Hi Anne, welcome to the forum, yes Hydroxycarbamide can cause hair thinning/loss, and many of us have experienced this, myself included when I first starting taking it 9 years ago, however, that has now stopped. If you continue to lose hair and it's quite a lot then speak to your haematologist and this could be a sign that you are having a rare side effect to the medication. Best wishes, Maz

[katiewalsh]

Welcome. I have thinning hair but it's not just in one spot. I only have ET jak2+. Hope your hair loss improves. Katie

[Jbut]

I have ET on interferon alpha injections for 8 years i have thin hair with treatment x

[Jerrymohler]

Hi, Anne. I also have ET JAK2+ and Factor 5 Leiden. I alternate 500/1000mg Hydrea (Hydroxycarbamide). I'm 70 years old and have been on the chemo drug for about a year and a half. My hair does feel finer and my hairline is receding; the latter do to age, I'm sure, but no other hair loss. Sorry to hear about yours.

[Anne2751 in reply to Jerrymohler]

Hi Jerry thankyou for replying it's good to know that there are others with the same problems. Can I ask if they said whether it alters your prognosis because of the factor V as well?

[Jerrymohler]

I suffered many terrible, potentially life-threatening, emergency trips to the hospital with ischemic colitis for ten years. They continued after I was put on Coumadin for the Factor V. Only after my ET diadnosis, and Hydrea, did I find relief from these attacks. Each time, surgery was being discussed to remove some, or all, of my intestines, I don't expect ET to shorten my life, barring a stroke. I'm willing to endure the symptoms: bone pain, fatigue, pain in fingers, burning toes, thinning hair, etc. Im just grateful God has found some purpose for me to live far beyond the years of my entire family of origin. So we travel a lot, and I take it one day at a time.