I am 51 male had ET for 20 years currently on Interferon.
After drinking alcohol I have a feeling of nausea and tiredness for days after. I’m not sure if this is to do with the ET or my age. I don’t drink much, most weeks zero but do like a social drink when out with others. Ideally I’d like to stop altogether but not sure how easy this would be. Anybody given up or seen intolerance since being diagnosed?x
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stevenjust
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I was a regular drinker (possibly having too much wine per week in comparison to government guidelines) and last year I gave up. I haven’t had a drop since last June and I feel so much better. I was finding I could get hangover like symptoms after just a glass of wine the night before, leaving me tired, headachy and generally ergh. I didnt know whether to put it down to not being as young as I was or the regular interferon injections, but I’m only 40! Either way, having given up I do feel way better in myself. More energy and a less fuzzy head, making it easier to deal with my demanding job. I’d still have a glass of wine if I fancied it, but truth is I don’t. If my husband has a glass of wine I sometimes have a sniff, but never fancy a sip any more.
I have had similar issues. One night I could have a glass of wine or two and be fine the next day. Another night I would drink a glass of wine and have a hangover the next day (and not just a little headache, but full blown in-bed-for-half-a-day-feeling-awful hangover). I could never predict when I would have this reaction (wouldn't happen every time). I haven't stopped drinking altogether, but I have significantly cut down.
I was drinking too much before my ET diagnose few months back. It was a good motivation for me to go cold turkey without alcohol for like 3 months. I never intend to go back to my old ways. Everything is so much better without booze. My gastritis cleared, I lost weight etc. But now I still enjoy few beers a week. I think the best way is to really stay in the limits of healthy drinking. I think you can stop drinking if you want to and if you feel that is the best way for you to do it. As you said you are really a light drinker I dont think you will have much problems doing it.
I have PV for 15 years. Even before PV diagnosis alcohol always gives me a pain my stomach. I rarely drink, but know if I do I'll get a bad stomach and feel rough. I'm not talking big amounts. Half a pint will do it. So tend to avoid alcohol. On Aspirin and venesections.
I'm on Lanzaprozole as I had a stomach ulcer years ago and because of the aspirin. It doesn't bother me not drinking alcohol. Got to be honest I'd rather do without alcohol than drink milk. I can't stand the stuff.
Been on peg for 2 years and alcohol definitely doesn’t sit as well as it used too, but not bad enough to stop a wee drop at weekends😂. After a couple of drinks I go off the idea of having any more and I get a need to eat followed by sleep. Very exciting!! Liver results fine touch wood. I get the feeling body is saying a little is ok. Could stop altogether but that first one really helps the relaxation so might leave it at that in future. I do make sure, as Mostow says, that I drink as much water (nearly) as alcohol. Maybe try that and if not there are some nice non alcoholic drinks out there for social occasions or so my daughter tells me. Peg can have effects on the liver so worth having a listen to what the body is saying. Good luck and I hope you work something out that suits you
I was diagnosed with ET last year and find that alcohol doesn’t really suit me any mores. I have an occasional glass of wine or a G&T but notice that anything red (wine or brandy) makes me feel quite unwell the next day. So I generally stick to white/clear drinks and copious amounts of plain or flavoured tonic water which died the trick just as well as akcohyfir me.
Agree about the water. I have increased my water intake and reduced my alcohol, but I still have a few drinks on the weekends. I just limit myself. I was probably like others drank more than I probably should on weekends before starting interferon but have basically cut back to 2-3 a week. And drinking 64 oz of water a day. i would tell you that you will just have to find the balance that works for you.
Alcohol and the interferons can both be hard on the liver and kidneys. It seems plausible that your body may just be more sensitive to the alcohol at this point due to the IFN. As others have suggested, it is very important to stay well hydrated when you have a MPN. Even more so when you are doing anything that challenges the liver and kidneys.
Increasing hydration may address the issue. However, it may be that you will have to decide whether alcohol is worth what you experience when you consume it.
I can only speak for myself. Prior to my PV diagnosis 3 years ago, I'd have a glass of whiskey at the end of every day. Subsequently, and given that I'm on 1000mg of HU/day, I've cut back to once a week and otherwise just have a beer. I know that zero alcohol would be better but I'm 76 and I do enjoy a drink at the end of the day. To counter alcohol's diuretic effect, I always drink a full glass of water prior to drinking any alcohol. I also drink a lot of water during the day. That seems to have made a difference for me. Hopefully you'll find a way to continue to enjoy an occasional drink. Best wishes
I've commented on this before as well - my body on Peg definitely does not handle alcohol as well as it used to..in fact I used to enjoy a glass a wine a day and now if I have half a glass maybe once a week that is a lot (handle spirits better than wine but those are also kept at a minimum). I don't have the nausea but fatigue is definitely worse after drinking and I just feel "out of sorts" (kind of like being hung over without the headache). My MPN specialist said he has heard of this in a number of his patients but not everyone. Since I had some liver sensitivity initially (now fine) thought probably best to down shift consumption anyway but it is hard at times not being able to enjoy a glass of wine. Same age....
I was never a great drinker but I suddenly got a searing headache from just one sip of a red wine and rose cider. That was in September, then I was diagnosed with PV in December and learned the link between headaches but I haven’t had alcohol since. To be honest, I’m a bit scared to mix alcohol with medication
During the webinar from MPN advocacy, posted by hunter5582 , the specialists discussed alcohol and suggested that abstaining from drink could be beneficial. Ultimately, we are living with chronic conditions and why should we deny ourselves some pleasure.
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