Any PBCers with PBC and Myeloproliferative Neoplasm? e.g. Essential Thrombocythemia

[Toddyboo]

Hi All, toddyboo here,

I was just wondering if there were any PBCers out there who have PBC along with an MPN? The reason I ask is I have essential thrombocythemia and have just been diagnosed with PBC and wanted to see if there were any PBCers who also might have a similar diagnoses.

[DoreenD]

Hi Toddyboo, yes I was diagnosed with ET 2007 and in 2013 was diagnosed with PRV. I was on only aspirin at first, then Hydrea and now on Pegasys Interferon injections. I am 80 now and just accept my health issues and enjoy each day as it comes. I was diagnosed with PBC 1988 and on Urso. Best wishes Doreen

[Toddyboo in reply to DoreenD]

Doreen,

Thank you so much for responding as I was wondering if there was anyone else out there with PBC on top of an MPN. Pardon me for asking but is PRV polycythemia vera? So from reading your reply, you got diagnosed with PBC pretty early in life as well as being diagnosed with ET and PrV. I read in my mpn group that some of the people in there were on interferons as they didnt tolerate hydrea or it just stopped working for them in their disease process and that some interferons might be able to put the disease in remission (but of course with anything, I'm sure they can come with more side effects).

I will be turning 66 on April 8th and am pretty new to all of this and was diagnosed with ET less than a year ago and take aspirin and hydrea daily but most likely soon will have to increase my dose as when I first started taking it my platelet count was 1 million and although my Plt counts have been coming down and moving in the right direction (closer to normal range ) my last blood counts show my platelets are starting to go back up.

It is nice to hear from someone else who also has similar diagnoses and personal life experiences with both PBC and MPNs. I finally broke down the other day and started taking the URSO as the doctor ordered although it took me a good week or two before doing so. I had a similar experience with coming to grips with starting hydrea as I have never ever been a medicine taker and reading the drug labels/side effects scares the heck out of me

I am still in the shock phase with all of this and from reading your post, am hopeful that things will be alright after I settle down a bit. Thank you for responding.