question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything we can do to bring them down? What is acceptable to y’all? My hematologist says not to worry until they hit 2-300..
My blood numbers actually look decent and I want to keep taking pegasys but I am nervous because my last ALT number was like 80 with the top of range being <41..
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dbus1417
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Elevations of LFTs are a known Pegasys/Besremi side effect. The Besremi label calls for dose modification if LFTs reach 5x/Upper Limit of Normal or is there is LFT elevation with concomitant bilirubin elevation, or other evidence of hepatic decompensation. accessdata.fda.gov/drugsatf...
My MPN care team was not concerned until we were nearing 3X ULN. At that point, I consulted with my Integrative Medicine doctor. She recommended a Milk Thistle Extract, which is used as a liver protection for cancer patients undergoing treatment. The Milk Thistle Extract returned my LFTs to normal limits. The LFTs occasionally fluctuate slightly above reference range but never enough to be any concern.
Note that it is important to consult with a knowledgeable medical professional regarding the use of supplements as complementary health interventions. Integrative or Functional Medicine doctors have this expertise. They can be a very helpful addition to a MPN care team.
A question Hunter, I’m just wondering what type of integrative medicine doctor you see. There are so many labels out there these days, I get confused. Would it be a naturopath?
Hi, I started Pegasys Sep. 23. In Feb. 24 my ALT was 82. Therefore my injection was changed to every second week instead of every week. Today the number is back to normal and all other results are ok.
How much do you take Peterwi I am on 45mg weekly but due to shortage getting uppef to the 90 mg fortnightly, My ALT 92 so bit worried abt liver on 90mg dosage ?
Yes - it’s my ALT levels that have spiked a few times in the past but went back to normal levels by my next 3-monthly blood test.
It hasn’t happened since I’ve been on a low dose of 45mcg Pegasys every 4 weeks - I guess due to the lower levels of interferon my body is having to process.
My experience is the common ET drugs Hydroxyurea, anagrelide and peginterferon all cause increased liver enzymes. At the start of my journey liver enzymes started rising and kept rising to 2X and ALT at nearly 3X normal. Unfortunately the side effects of the first two drugs I was prescribed in that order also ruined my quality of life and went to third drug peg but only after enzymes came down. Enzymes came down on their own to normal levels after 2 months of no ET treatment, and platelets shot up to 1.3M. I was referred to liver specialist to confirm the root cause was ET drugs. She ran tests and confirmed. Taking peg caused same enzyme increase though not as fast nor as high as the other two drugs. The two month break cost me a year of treatment! I was determined to not stop peg treatment that was working so much better for my ET. I found invaluable information from Hunter5582 about milk thistle. I reviewed with hematologist. She was surprised I brought it up but happy I was not hesitant to try it. The nurses at the clinic all spoke highly of it, seeing mostly very positive results in patients getting chemo treatment. I started taking 175 mg capsules twice per day--low and steady. Took 3 weeks to see enzymes start to react, slowly move downward. After 1 month I increased to 350 mg twice per day and enzymes came down quite well over next several weeks. It was cause for celebration--didn't have to stop treatment this time to detox my liver! I remain on 68 mcg peginterferon weekly. I am still taking milk thistle though back down to 175 mg twice per day as maintenance. ALT still bounces up but comes down again with no further intervention. Be sure to discuss with your treatment doctor--no surprises and no disappointments are good things. Also be sure to check for name brand, the purest milk thistle (silymarin) extract It works for me and I hope will do same for you. Stay safe.
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