High liver value

[Adamidis]

Hello everyone,

I am new in the forum. Pre Covid I was diagnose with ET jack2.

I was on hydria pills for 6 months and then started with pegasys.

135mcg weekly then drop to 90mcg.

I have been taking 90mcg for almost an year.

Side effects are often affecting my life inclusive family around me.

I am often grumpy, don’t sleep well do to the difficulty to breath and at night I sweat to much.

Since the first diagnose my liver levels are always high.

Does anyone have the same problem?

I have just changed, after consulting with my specialist, to 135mcg every two weeks.

Does anyone have any feedback regarding the side effects spread for a longer time.

I hope this will make sense

Thank you in advance

[hunter5582]

Hydrea and Pegasys can both affect liver function. If the elevated liver function tests did not start until after the meds, then it is reasonable to think it is a medication side effect.

Some of what you are describing sounds like MPN symptoms and some could be other medication adverse effects. Here is a link to med side effects for Pegasys.

online.epocrates.com/drugs/...

Night sweats can be associated with MPNs or be a medication side effect called rigors.

Rigors - "a sudden feeling of cold with shivering accompanied by a rise in temperature, often with copious sweating, especially at the onset or height of a fever."

It can be hard to sort out what is the MPn and what is the medications. The biggest clue is when did the symptom begin.

Hope the change in dosing helps. If not, you may wish to disc uss Besremi, which a slower release version of interferon.

[Marikapi]

My daughter of 26 also has ET Jak2. She started on Pegasys, 90 every week, a few years ago, when she acquired Von Willebrand. Her liver values went up high and her hematologist wanted to get her on Hydroxurea instead. We took a second opinion and were advised to find the level of pegasys dosage where her Von Willebrand would not be present, and the liver values not suffer too much, and the platelet count go down. Since the en she is on 45 mg once every 4 weeks. So a very low dose. This keeps the platelets around 600. So maybe you should get a lower dose or a lower frequency as well to be kind on your liver.

[Adamidis in reply to Marikapi]

Hi, Thank you for your reply.

It sounds a great outcome.

I am also affected by VonWillebrand but not alway showing on the blood test. Maybe because when teste I was taking hydria.

I would love to drop as lower as possible with pagaste.

The increase from 90 to 135mcg did not really helped with side affects.

Thank you all

[Hopetohelp]

When they put my dose of peg up to 90 I found I had breathing problems. Couldn’t exhale properly and one night was quite short of breath. Went back to 65mcg and symptoms mostly gone . My figures came down slightly on last blood test so in my mind breathing problems means needing more oxygen meaning more blood cells produced hence why my results actually went up with the increase in medication. Only time will tell with next few results. Liver been ok but results went up slightly on 90 dose. Best speak to your haematologist and if you have a nice understanding one like mine you can do a bit of trial and error to see what works best for your body as we are all different. She does warn me though that I might be putting myself at risk but that’s a risk I personally am ready to take. Pegysus can take a time to kick in. Good luck