Is there a link between PV and Alopecia areata (... - MPN Voice

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Is there a link between PV and Alopecia areata (AA)?

Lettie_WP profile image
2 Replies

Hi,

Back in Summer 2019 I was diagnosed with Alopecia areata (AA). Then in Feb 2020 a blood test picked up high red blood cells / haemoglobin and haematocrits. In October just gone I was told I almost certainly have PV despite being negative for JAK2. (I have low EPO too). I see my consultant later this week to discuss my set of recent blood tests (to see where we are / where we go from here).

Just recently my AA has got really bad - a worrying hair loss pattern called Ophiasis . It doesn't respond well to normal AA treatment so I've been trawling the internet to see what is out there. In the course of doing so I was surprised to see that JAK inhibitors are used! Ruxolitinib is one that I've seen mentioned and recognised it from here.

Is there a connection? Is it a clue to my PV?

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Lettie_WP
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billybrock profile image
billybrock

Hi Lettie_WPI have been on Ruxolitinib for over 12 months after progressing from PV to MF.

I have not experienced any side effects and it does seem to be controlling and my MF symptoms. Not much else to say. But if you have any other questions, let me know.

Billybrock

BlushNoisette profile image
BlushNoisette

Hi Leftie,

I've been taking ruxolitinib for 5 years to manage PV. It works great for me and has really improved my quality of life compared to before I started taking it. I believe that rux has been used as a treatment for alopecia but I don't know any more about that, though I'm sure you could find out more info on-line if you have a careful look. Best wishes.

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