Anyone with Post ET/MF & Budd Chiari?

[KADS]

I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7 years ago more formed as well. Because of decreased blood flow...I've developed non-alcohol cirrhosis of the liver from the Budd-Chiari. My spleen is now enlarged to 21cm, my blood counts are going just below normal in red, white and platelets and I'm experiencing portal hypertension with terrible circulation!! As soon as I can sort out my health insurance; my doctor wants to start me on Jakafi. Can anyone tell me if they know if Jakafi has negative effects on the liver? I feel as though I'm in a juggling act to protect my remaining liver function and fight my blood cancer. Any advice you all have would be greatly appreciated!!

[amalekh]

Hi Kads,

I'm MF post PV intermediate 2 with Budd Chiari. I started Jakavi 3 months ago. My life quality is totally better. I have no side effects so far except the mouth ulcers, which is unlikely to get with Jakavii, as per my hematologist.

My liver is stable after I had a stent placed into the right artery since 2010.

I'm waiting for a match to undertake the SCT.

Feel free to ask for further information.

Malek.

[Wyebird]

Males has said it all I wish you well.

[Aime]

Sorry can’t answer your questions but thinking of you and wishing you well ASAP. Kindest regards Aime xx😺😺

[Tico]

Hi KADS, just looked up Budd Chiari as i had never heard of it. Wow it is so very rare,they reckon 1 in every million in the population, & having et/mf too! Like Aime i have no answers but certainly wish you well. Atb to you KADS.x tina🤗

[Leighcox85]

I have mf portal hypertension and budd chairi causing liver disease I have had jakafi for around 2 years at first I did benefit but not so much now I to am waiting to see if my doctors are prepared to go for sct but jakafi reduced my spleen and it’s never had any bad effect on my liver but your doctor will keep an eye on you good luck

[Jlah]

Hi. I can’t comment but wish you all the best. Jacquie x