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Alcohol

Hi I’ve asked before but thought I’d put it out again this festive season. Do people still drink or have you given up completely? I have ET and Jac2 positive and have been having a few prosecco over Xmas with no side effects. I don’t drink excessively but wonder if it does more harm than good with medication and disorder? Jackie x

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Hi. I stopped completely. Alcohol intensifies my aches and pains. ET.

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Sorry to hear that, it effects people so differently.

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I do miss that cold beer camping. Take care and Happy New Year.

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I don’t drink very often, but New Years Day , Birthdays etc, so about 4 or 5 times a year I’ll have a few pints and get a bit merry. Drink does affect me worse than it ever used to, so when I get home I always drink loads of water. Basically physically it’s not good, but if you feel that you can’t enjoy yourself anymore because of this illness, then having a few drinks occasionally will do you good psychologyically which in turn is good for you as being happy produces seratonin and dopamine which reduces pain perception and reduces cortisol (stress hormone) So in reply, don’t drink too much too often, drink loads of water after you have finished drinking and enjoy yourself. Happy New Year. Raphael

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Thanks for your reply Raphael, I do try and drink plenty of water. Happy New Year to you too x

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My wife Joyce used to have a glass of wine now and then, maybe two or three a week at most. A year or so before finding out she had Myelofibrosis and is JAK 2Pos she did notice getting red cheeks and upper chest after a drink, this used to happen when she got hot or felt hot too, also at this time noticed her BP had risen. Since May she has not drunk alcohol, as she has enough poison going in to her body on a daily basis with the Anagrelide and Hydroxy. Now she no longer gets red cheeks or upper chest when hot or feeling hot. As she has not tried a drink she can't say if it would, but she doubts it would.

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Thank you for your reply.

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I drink alcohol - wine and some spirits - and haven’t changed on that score since diagnosis in early 2017 or since starting hydroxy in July 2018. I drink 1.5 to 2 litres of water every day, throughout the day and did before too. I haven’t noticed any difference in reaction to drinking alcohol compared to pre ET. I’ve done some online research and have not been able to find anything concrete that says alcohol is verboten.

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Thanks for your reply WileyFrench, appreciate your input x

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Hi Grumpyfairy, that does make me giggle 🧚‍♀️ As I have said before I was diagnosed over five and half years ago now with E.t JAK2 Posative and take Aspirin and Hydroxycarbamide daily two Sat and Sun. I still enjoy a glass or two of wine with my meals without any problems, and over the Christmas period this did increase but I also drink at least two to three Ltrs of water in a twenty four hour period as wine can be very dehydrating, this does really help, I have found since my diagnoses that I have in fact become a lot healthier and fitter this is down to my eating a Good balanced diet and doing workouts every day, and I turn 70 next year so this is important for me.

So here’s to the New Year celebrations and I hope you enjoy them I know I will. 🍸🍹🥂🍾 HAPPY NEW YEAR 🥳

Jean x

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Thank you superwoman, love your name too. Im on same dosage as you. I’m also trying to be healthier food wise and exercise, even though I’ve always been into fitness, but now struggle so can’t do what I use to. Happy new year to you too, carry on doing what you do as obviously working x

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I drink 25 - 30 units red wine per week (more on special occasions). No problems. Rest of my lifestyle very healthy and I’m sure this helps. Drink plenty of water.

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Thanks Paul, seems most can tolerate it along with plenty of water x

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I do have a g&t now and again, also enjoyed some Baileys over Christmas .

I just don't feel like drinking a lot as I have always been a 'cheap drunk' !!

I really don't think a small tipple now and again will hurt. Basically do what makes you happy. Cheers everybody. 🍾😉 Happy new year.

Sandy x

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When I asked my Haematologist he said it's ok to drink in moderation. I have, however, stopped drinking completely as part of my living-healthier goal. Can't say I miss it as the last year or so only a few drinks would give me a hangover.

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Hi Jackie,

I used to drink a little, but I don't seem to be able to tolerate alcohol much at all now. My tolerance for it seemed to taper off slowly over a number of years. I suspect that the ET I have may have something to do with this. I do have a nice looking small bottle of a dessert wine that has been sitting here for months and I am determined to sample a little of it one fine day.

Happy New Year!

Peter :-)

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Hey there Grumpy Fairy... (Love the handle too...) :-)

I used to... Love a beautiful glass of one of our many Margaret River vinos, as we are so blessed with them, and they are usually superb!

However, I do drink less & less these days, as I note that whenever I do partake, my fatigue seems to be much worse. These days... I am doing loads of cycling, and anything that affects my fatigue levels is keenly felt. Hence, most of the time, I simply abstain altogether. It just seems easy is all... But as you stated above, we are all so different...

I doubt very seriously that I would have ridden my longest ride ever yesterday (100.3kms), if I was still having a snoot on a semi-regular basis... In fact, I am certain of that...

Very best wishes

Steve

(Sydney)

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I drink lots , we have to live life not endure it . Town crier ET/PV for 30 years now 74 . No side effects whatsoever .

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I drink less these days as it hurts more than it used to - but that’s probably more related to age than ET..!

Advice from my doctors is to not overdo it but I certainly don’t avoid alcohol completely..!

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Hi there,

MPNs can be quite limiting and isolating, so we all need to get our enjoyment where we can. I am 69 with ET and u find I cannot tolerate alcohol as much as I used to, but I'm not sure if that is an age thing or ET. My response has been to buy better quality wine, but drink less of it (not more than 2 regular glasses per day). It works for me. I enjoy the wine more and it doesn't appear to exacerbate the ET. In summary - if it feels good, do it 🤗

All the best for 2019

John

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I still drink when I go out, although I don’t think my body can tolerate a boozy night any more

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I love to drink and socialise but I pay for it the next day with a horrendous hangover. So these days I try to limit myself to 2 drinks, 3 max. I'm not sure if it's my ET because as long as I can remember I got hangovers- just can't tolerate them the same these days, so try to avoid over doing it.

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I used to drink every Friday night, go down the pub have a couple of pints with the boys, but I have JME [Juvenile Myoclonic Epilepsy] since I was 14, I'm 62, I have been taking medication since then, but I was a 'local' at my local by 16. Three years ago I gave up drinking, purely lack of money, then last September I was hit by pancreatitis? Apparently all those Friday nights and long term effects with medication, no other cause! So even if I wanted now "no more Friday nights!" Happy New Year Jackie?

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As far as I am aware there is no harm at all having a drink with ET. I’ve had ET since 2003 and there has never been any suggestion that alcohol should be stopped. Just have it in moderation and if you feel ill see your doctor as I would bet it’s got nothing to do with alcohol - unless of course you abuse it!

I was diagnosed with myelofibrosis in 2016 so I have both and once again there’s been no suggestion that to have a drink would affect anything.

Hope that helps!

Sue

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Hello grumpyfairy!

I agree with most of these commenters. :)

I have PV, JAK 2 positive, taking interferon 45 mcg every other week now. I am a bit of a craft beer enthusiast and live in microbrew central, which is probably a bad combination. But! I drink a beer every night or even 2, and it doesn't seem to make me feel too bad. I have been drinking occasionally since I was diagnosed 4? years ago. My hem, Dr. Brady Stein, said it's fine to drink within reason. I do jog every day, too.

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Hi Grumpfairy

I have ET jac2 pos. Diagnosed 2008. Currently take aspirin daily (generally in the morning so I'm not having it in the evening if when I have some alcohol. I like to have a drink at a weekend (fri,sat,sun) - Maybe a bottle of beer or glass of red and later a single splash of whiskey. Have a bit more when I'm on my hols or out with friends, though not big drinker.

The same as mentioned by many above, I drink plenty of fluid through the day. Try to get two to three litres. Always start my day with a pint of water.

Happy new year.

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Hi for me I saw my 35th Sober Christmas.

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My doctors seem relatively relaxed about drinking - although they do tell me to stick to the recommended limits of 14 units a week (presume this is as much about general health as it is the MPN). I’m not symptomatic and probably drink close to twice that amount with two nights off each week. Should probably improve on that but it’s all about balancing what makes you happy with your health concerns.

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Hi, I have just been diagnosed with et in November I wasn't given too much information. This is a very relevant post to me as along with fatigue the past year or so my tolerance to alcohol has definitely been noticable and I wondered when diagnosed if there was a link. So much so I checked online and came across this site.

I love going to the pub though it could be weeks between a visit I very rarely drink at home. It is a big part of my social life and I have been trying to reduce the amount hoping this will help

As i said I am only coming to terms with et and my aim will be to live healthier as a I see a lot on here and do what I can to fight the fatigue but I would struggle without my nights out

Happy New Year to all and thanks to those who run this site. I have some questions ready for my next visit to haem

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I have ET for about 5 years, I was a light drinker/cheap drunk before, so I just gave it up. No meds but aspirin but saving my liver for a stem cell transplant :-). Everyone is different, I just haven't missed it. For women, exceeding recommended limits increases breast cancer risk.

As others have stated, it is dehydrating, so water up!

Happy New Years peeps, we are still pushing through, onward🤗

Take good care!

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