PV on Pegasys, now with high liver studies

[MaryELWoods]

How common is this? My doc said to “cut back” on alcohol....I drink a glass or two of wine a week, so I guess I should stop altogether? I appreciate your experience...

[Superwoman]

Well that’s a new one on me, I asked my Haemo should I refrain From having the occasional glass of wine after a pharmacy told me that I should not be drinking any alcohol while taking Hydroxy, and did I know this !!!, when I was first diagnosed nearly five years ago, but he said, in moderation is fine and to keep the water intake up which I do, plus I eat a very healthy diet and keep fit which has enabled me to have normal blood counts for well over the last two years.

My attitude is that as long as I am sensible, life is for living even with an MPN it does not and will not rule my life. I live with it but it will not dominate me.

Don’t get me wrong Mary, but a little of what you fancy now and then never hurts you, but of course if it make you unwell when having a glass then leave alone but if you still enjoy a glass or two now and then I cannot see any harm in it. 🤪

I expect there are some people on here who may agree with me and that some will not but as I say it’s a case of being sensible and enjoying life.

Jean x

[MaryELWoods in reply to Superwoman]

Thanks Jean! I agree, I'll cut back but not eliminate! 😊

[jane13]

I had a problem with liver counts for a while with PV, stopped drinking more-or-less entirely for a while liver counts improved, started modest drinking again, been fine since. So maybe give it a short rest and review counts then?

[wendycu]

I got told not to drink alcohol, I’ve not had for 13 years now and I don’t miss it.

[Paul123456]

Mary

Are you taking a significant amount of painkillers? This would impact your liver function tests.

Best

Paul

[MaryELWoods in reply to Paul123456]

No

[Heidi-W]

Have you had a recent ultrasound scan of your abdomen as my spleen is enlarged and touching liver and caused raised LFTs ( my liver was fine on the scan ). I'm now on hydroxy for PV and LFTs slowly improving hopefully due to spleen shrinking. I rarely drink now as body doesn't seem to fancy it anymore. It might be worth you having a break from any alcohol for a couple of weeks to see if LFTs improve and then you can decide re future alcohol consumption. Good luck

Heidi

[MaryELWoods in reply to Heidi-W]

No ones looked at my spleen at all.

[Lab-Rat]

Hi Mary, Pegasys does impact on the liver. I enjoy a glass of wine with my dinner. My liver counts were all normal prior to starting Pegasys. Counts went up as soon as I went on Pegasys. I stopped Pegasys for a while and levels went back to normal again. Back on Pegasys counts went up again. So it has nothing to do with alcohol and all to do with the medication. Elevated liver counts are listed as a side effect.

[Lab-Rat in reply to Lab-Rat]

I must add my dr is not worried about my liver counts as it is my "new normal" when I'm on Peg.

[MaryELWoods in reply to Lab-Rat]

My oncologist took me off Pegasys until my liver functions are normal.

[Susana7]

Hi Mary, I have elevated liver counts and have been on Pegasys for over 2.5 years. The liver counts were already slightly elevated before starting Peg (the haemo said I had a fatty liver) but they have gone up further since Peg. It is a possible side effect. I have cut down alcohol altogether (except the odd glass at birthdays) and they are still elevated but only very mildly now. So we do have to be very careful with alcohol intake and anything else that further aggravates the liver. All the best to you.

Susana x

[wormwood]

I had high or abnormal liver tests and i dont drink at all... the docs kept asking me if i drink lol

[Paul123456]

I’m starting low dose Peg in a couple of weeks plus I drink 25 - 30 units of wine per week. I have regular 3 monthly liver function (plus cholesterol, iron and vit D) via Thriva.co.uk. Prick a finger, fill small tube and post, results in two days.

I know that Peg users get regular thyroid tests, does this include liver function? And how often do you have these monitoring blood tests?

Re liver function results, I’m paranoid about avoiding all painkillers if I can avoid it since I recognise my 25/30 units is unhealthy. I obsessively compensate with healthy diet and exercise.

My theory is that, assuming good general health/diet, the risks from drinking rise exponentially from the Gov’s 14 units. Hence the real life risk at 28 is only modestly higher than 14. At 56 units the risk becomes very significant.

Re Peg leaflet instructions to avoid alcohol, remember this is a drug used to combat hepatitis/liver damage.

My hem, who enjoys a drink himself, says I should have no problems.

[Lab-Rat in reply to Paul123456]

Hi Paul

I am not sure how much a unit of wine is. 25-30 units of wine translate into how many millilitres? My dr has never asked me if I drink alcohol. A thyroid function test is not included in my battery of tests. Thanks for mentioning it I will ask my dr about it.

[Paul123456 in reply to Lab-Rat]

I saw my Hem today, he thought I should have no problems. My impression was that North of the Border (he’s Scottish), 25 units is considered pre dinner drinks.

I work off 10 units is one bottle.

[Mazcd Partner MPNVoice]

Hi Mary, I asked Prof Harrison about this and she has said: Follow national recommendation unless the doc said this for any other reason eg abnormal test results.

I hope this helps. Maz

[MaryELWoods in reply to Mazcd]

Thanks Maz. My tests results are abnormal so I guess that's why he doesn't want me to drink.