PV and Mastocytosis

[shaks]

Anyone with PV and Systemic Mastocytosis? I was diagnosed with Mastocytosis 2013 and PV 2019

[Stephen399b]

I have ET with mastocytosis. Seems to be very rare, you are the first person I have found with an MPN and masto. I was diagnosed in 2016 with a BMB.

I take Hydroxicarbamide, Fexofenadine and Loratadine - the latter 2 specifically for the masto and I do have an epi pen as I did have one episode where I passed out following an anxiety attack.

I went to St Thomas Hospital in London to see one of the specialist team down there (Dr Radea) and they said it is indolent version, so I don't worry too much.

Interested to hear your experinces.

Stephen

[shaks in reply to Stephen399b]

Hello Stephen

I was diagnosed with ISM in 2013 by St Thomas hospital and July 2019 was diagnosed with PV by Dr Radia at Guys. Having an MPN changed my ISM to SM-AHN. I have only had one phlebotomy for PV and have been on blood thinners for many years due to PE after spine op in 1997. I am not on any meds for PV yet as bloods have stayed stable. I am on 760mg fexofenadine, 20mg citerezine

And 800mg sodium cromoglicate daily for masto as I am very symptomatic even with avoidance of triggers. Sadly I have been debilitated and house bound last 7 years and unable to drive due to foggy brain and anxiety. You are also first I have come across with SM with and MPN. I live in Hertfordshire after moving from hectic North London since Birth.