Possible Myelofibrosis?

[Nerjalover]

Saw my consultant on Wednesday. Told her I was having a liver biopsy the following day. She told me to stop the interferon I was on immediately! I am injected every Sunday with 90.mg.

Later I wondered why ( when they referred me to the Liver specialist 5 months ago) they didn’t take me off it then? I will ask this question when I return in 4 weeks!

They have found some slight signs that my bloods may be becoming fibrotic! ( not great)! I will have a bone marrow biopsy in the next few weeks to determine what’s happening!

So at the moment I am on one 500 hydra tablet for 5 days a week but no other meds for my PV.

Worrying it’s going to turn into Myelofibrosis!

[Scottishterrier]

Hi I have et jak2+ it must have been 1999.i thought it was heartburn and I was chewing gaviscon by the packet load my mum and late dad where worried about my colour pure white and yellow and my two work colleagues were worried as even eating sandwiches I could only manage one so saw my haematologist who ordered a CT scan early November so I had to go through Christmas and new year with no appetite and sore to breath so after festive period got on too GP receptionist who was snippet when asked for my results in yet with it has being the festive period I replied I got it done 1st November oh was reply you have to come up and see your GP went up was a clot on the liver so immediately got a consultant appointment and that was when I was put on hu maybe the liver is a weak spot but luckily it is the only organ that can reinstate it self and I was put under care of gastro consultant so maybe don't worry until you get results as it maybe something easy treatable I have never looked back everything well controlled Stay safe

Scottish terrier

[Luthorville]

when were you first diagnosed ?

[Nerjalover in reply to Luthorville]

With ET in 1997, PV in 2023 and having a BMB in next couple of weeks to see if the blood markers they are concerned about are in fact MF

[Pv2003]

Fibrosis is common in pv and doesn’t mean your post pv mf. What are your other counts and symptoms?

Falling HGb, enlarged spleen, night sweats, fever and weight loss are possible signs of progression.