Liver Issues on Inf (Peg) (apologies for long post)

[Solyesh]

So spoke with my MPN specialist last night about my recent CBC results. The good news is that the 90mcg of Peg (bi-weekly) appears to be doing a good job keeping my blood chemistry in check. Platelets continue their slow downward trend (most recent reading at 574 coming most recently from 725, 643, 595 and well below my average of 700-800 over the past 7 years. WBC at 9.4 is great as prior to treatment (first with HU and then Peg) I had fairly stubborn leukocytosis (readings from 11.8 - 14.6 over past few years). HCT and Hemoglobin as always within range. So it would appear that the Peg is doing exactly what it should and with 0 notable side effects (much better than my HU experience)......

However - it is doing a number on my liver function readings. The latest ALT is back up to 129 and the AST (GOT) is 56 - both above high end of normal range. I had my first abnormal readings back in January when both readings jumped. This was about 3 months into my Peg journey. I started off at a fairly aggressive dosage of 180mcg bi-weekly..mainly due to my intolerance and lack of responsiveness on HU (took very high doses of HU to move the needle on Platelets). As temporary liver toxicity is a known potential SE for Peg (and I assume Bes as well?), my MPN specialist suggested that we take a month off in Feb to see how my liver would react. As expected the levels came back into range (indicating it is likely the Peg and not social drinking causing potential liver issues - although I did cut down alcohol to one glass of red wine a week).

We then re-started the Peg in March at half the dose (so at my current 90mcg bi-weekly). The first two readings (March and April) the AST (GOT) was back in range and the ALT was just slightly elevated (not of clinical importance as my MPN specialist stated). So that was good news, but now on this reading they are both back up. My MPN specialist is convinced it is the Peg..he is willing to continue on the current course if the readings stabilize where they are (elevated but not critical) but if they continue to rise he said he would suggest a possible different course of action (as he put it - we don't want to permanently damage your liver by making your blood better).

Given my previous bad time with HU, I know his next suggestion would be Analegride to help control the platelet levels. I am hopeful that perhaps my liver can calm down and stay at current levels as the Peg seems to be working well on the blood chemistry side of things and the Interferons are the only, currently used, drugs for ET that might hold out hope for both a hematologic response, and disease-modifying activity (on which I have been fairly focused (QOL notwithstanding) given my history of stubborn leukocytosis; my high Allele burden and ever-increasing platelet counts (pre cytoreductive therapies).

Finally (so sorry for such a long post) my ESR 1 hour was measured for the first time. I forgot to ask the MPN specialist why we started looking at this metric. Good number at 11 - do others get this test as part of their routine bloodwork (I can send the specialist an e-mail asking but thought I'd reach out to the community).

So current plan is to remain at 90mcg for another month to see if my liver can calm down and adjust to the Peg. If so great, if not, I think I will suggest another month break and then a restart at 45 mcg bi-weekly to see if perhaps the lowest possible dose continues to have a positive effect on the blood chemistry without further liver damage.

[Hopetohelp]

Wow thanks for the great detail on numbers as helps to give a very informative update which we can all understand and elate to on a personal basis. I hope you can get the balance right on peg. I sometimes wonder if upping the dose speeds everything up but with a toll on the body as mine didn’t like 90mcg so still plodding on 65mcg but platelets being a bit stubborn. Did your platelets continue to decrease when you had the month off? As far as I know I haven’t had an ESR done. It sounds like you have a good plan though and I wish you all the best and hope liver sorts itself out. Look forward to next update

[Solyesh in reply to Hopetohelp]

Thanks! I am hoping that the liver sorts itself out as well - I knew we were being aggressive starting out at 180 mcg but was in agreement with plan given stubbornness of the platelet counts.

As soon as I was off the Peg the blood counts jumped (both platelets and WBCs) and responded immediately once back on - so hoping to be able to continue.

[Hopetohelp in reply to Solyesh]

That’s very interesting. Shows the peg is working

[hunter5582]

i expect you are right that the PEG is the issue with liver function. This is a known risk. Hopefully a lower dose and patience with bringing the numbers down will work. I would note that some people do better with a combination of a low dose of several medications. We are each unique in how we respond to treatments.

Hope it all works out as you hope.

[ritaandscooter1]

Hi Solyesh, I too had immediate liver elevations when I started on Pegasys 45mcg weekly. My ALT numbers tripled within 2 months so my doc cut the dose to 22.5mcg weekly. This extremely low dose right away normalized the liver enzymes but barely lowered my blood counts, although helped with delaying a phlebotomy from 3 months to 4 months. This drug unfortunately didn't work for me. I'm not sure if Besremi would do the same thing. Currently on 2 low dose aspirin a day with phlebotomy as needed (usually every 3 months). My doc said I'm a extreme lightweight on drugs so would need to do Bes at a super low dose as well. A small percentage of people are affected with the liver by taking IFN. Seems like a lower dose would bring ALT back to normal. Good luck! Kerry

[Solyesh in reply to ritaandscooter1]

Kerry - thanks! I would imagine that Bes would cause similar results but as it is a different formulation who knows. So much of this is trial and error. Hopefully things stabilize (or do not get worse) - if not then I think we take a break and then go back on lower dose (assuming the blood counts stay good). Good luck!

[Jelbea]

ESR is short for erythrocyte sedimentation rate. Blood is drawn into a long tube and after an hour the blood divides and the sedimentation which drops down can be measured. It is a test used for measuring inflammation anywhere in the body. For instance people with rheumatoid arthritis would have a raised ESR. I think the normal range is 1 - 20 so 11 would be fine. Hope this helps.