Newly diagnosed : Hi, I have recently been... - MPN Voice

MPN Voice

10,832 members15,125 posts

Newly diagnosed

Anne2751 profile image
6 Replies

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

Written by
Anne2751 profile image
Anne2751
To view profiles and participate in discussions please or .
6 Replies
Mazcd profile image
MazcdPartnerMPNVoice

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 profile image
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 profile image
Jbut

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

Jerrymohler profile image
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 profile image
Anne2751 in reply toJerrymohler

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 profile image
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.

Not what you're looking for?

You may also like...

Newly diagnosed

Hi I am new to this, I have been diagnosed with myeloproliferative disorder but as yet is...
Brendaf profile image

Newly diagnosed

Just found out I have ET after BMB. I am new to this site and the whole concept of having blood...
Janet123 profile image

Newly diagnosed

Hello all! So I am fairly recently diagnosed with ET, though it's been something we have been...

Newly diagnosed

Hi, my name is Mandy, i was diagnosed JAK2 positive in January and told 2 weeks ago i had PV and...
Lallybroch1 profile image

Newly diagnosed

I am a 63 year old woman in the United States and have been diagnosed with Myelofibrosis. Had a...
Realtorlin profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.