Enlarged liver

[Cazbolac]

I was diagnosed with myelofibrosis 4 years ago and am on Ruxolitinib 25 mg daily. Had it reduced some time ago to see if the dose was tied into the rising alt levels. When I was first diagnosed I had an enlarged spleen and liver but Ruxolitinib reduced them. However for about 8 months I have been getting pain which is round the liver area and my last scan showed the liver has grown again. Everyone is unsure why. Has anyone else had a similar experience and, if so, how was it handled by medics.

[socrates_8]

Hey Caz...

I am also MF and started on Ruxolitinib 25mg bd, and recently decreased down to 20mg bd. Actually, this is now the 3rd time that such a reduction has been attempted.

In my case, my spleen & liver were enlarged but not hugely, and they both decreased significantly in size after Jakafi commenced.

However, there is a theory that suggests that Jakafi does not always keep working well in every case, and some suggest that after three (3) years it can become less affective.

Every time, I have had a reduction in Jakafi, there has been increased bone & joint pain, along w/ cold sweats & some abdominal inconsistencies, and I believe that my spleen & liver do go up & down a tad in size. It's all a bit of a roller coaster for me. Recent scans also shown that both my kidneys are continually decreasing in size. But at this stage my spleen & liver are okay.

In my case, I have also always had very high platelets c. 1M, and the lowest the Jakafi has ever produced was c. 648. I have already experienced twice, TIAs, which are a tad disconcerting, and I am now considering trying a combination therapy in order to manage my platelets better than at present...

Hope you can get it all sorted soon.

Best wishes

Steve

(Sydney)

[Cazbolac in reply to socrates_8]

Thank you for your reply. It helps to get information from a fellow sufferer. I often feel that people still do not know that much about MF and Ruxolitinib. It is all one big learning curve which can be so frustrating.

[socrates_8 in reply to Cazbolac]

Hi again...

I hear that... There is very little doubting that this is very much a new field of exploration, and that all of the latest advances have really only occurred over this past circa last decade...

...Hopefully, the next decade might prove to just as exciting & illuminating.

In the meantime, people, (especially ones as impatient as myself), need to learn to be even more patient while always endeavouring to remain positive irrespective of our MF/MPN conditions. These are new horizons, and our world changes at such a rapid rate via technology...

Philosophically, I realised some time ago now, that none of us are ever getting out of our journeys untainted by the infirmity of life's inconsistencies – none of us (that I know of) are immortal.

Hence, I have determined to smile and just try to enjoy what ever joys we have...

Steve

[Dodders]

Hi, not sure I'm able to help but my this is, briefly, my experience with MF, Ruxolitinib and my liver; Diagnosed with MF last Aug. Started on Rux last Dec (2x20mg) and as a result my spleen reduced rapidly, night sweats all but stopped and no more bone pains. Rux dose has since been reduced twice as platelets dropped and also anemia kicked in and I'm now on 2x5 per day. There were some concerns over my liver so I needed to see a hepatologist to look into this as well as suspected portal vein hpertension/suspected portal vein thrombosis and also gastric varices which had bled quite badly last Oct (my Hgb dropped to 56). Initial fibroscan result was 41 (out of 70!) which suggested cirrhosis which was rather horrifying. Extensive blood test results led the hepatologist to conclude that my liver was (probably) ok and the fibroscan result was wrong. I certainly have no sysmptoms of liver cirrhosis. Hopefully, if donor is available, heading for transplant but varices etc need sorting out first. Good luck.