Alcohol : Hi I’ve asked before but thought I’d put... - MPN Voice

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Alcohol

Grumpyfairy profile image
32 Replies

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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Grumpyfairy profile image
Grumpyfairy
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32 Replies
CalrType1 profile image
CalrType1

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

Grumpyfairy profile image
Grumpyfairy in reply toCalrType1

Sorry to hear that, it effects people so differently.

CalrType1 profile image
CalrType1 in reply toGrumpyfairy

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

Raphael_UK profile image
Raphael_UK

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

Grumpyfairy profile image
Grumpyfairy in reply toRaphael_UK

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

wandaruth profile image
wandaruth in reply toRaphael_UK

Well, the fact that you don't drink often is already good

jointpain profile image
jointpain

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.

Grumpyfairy profile image
Grumpyfairy in reply tojointpain

Thank you for your reply.

jennvasu profile image
jennvasu in reply tojointpain

I completely agree with you.

I used to drink every day, and it had a terrible effect on my health. I had big bruises under my eyes, my body was flabby, and of course, I had a huge belly. Then I began to have sharp attacks of aggression. I began to yell at all my loved ones often. As a result, my girlfriend gave me an ultimatum, either I quit drinking, or she left me. Of course, I didn't want to lose her, so I turned to abbeycarefoundation.com for help. Having gathered all my willpower into a fist, I passed a special course, and now I don't feel attached to alcohol.

WileyFrench profile image
WileyFrench

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.

Grumpyfairy profile image
Grumpyfairy in reply toWileyFrench

Thanks for your reply WileyFrench, appreciate your input x

Superwoman profile image
Superwoman

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

Grumpyfairy profile image
Grumpyfairy in reply toSuperwoman

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

Paul123456 profile image
Paul123456

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.

Grumpyfairy profile image
Grumpyfairy in reply toPaul123456

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

Stevesmum42 profile image
Stevesmum42

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

Chris_H profile image
Chris_H

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.

stillkicking profile image
stillkicking

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 :-)

socrates_8 profile image
socrates_8

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)

catkinspolymer profile image
catkinspolymer

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

AndyT profile image
AndyT

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..!

Ovingite profile image
Ovingite

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

Wyebird profile image
Wyebird

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

Mallard profile image
Mallard

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.

Adlon57 profile image
Adlon57

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?

Coradelphine profile image
Coradelphine

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

deniselmu profile image
deniselmu

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.

TrickyDicky profile image
TrickyDicky

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.

rkhabtec profile image
rkhabtec

Hi for me I saw my 35th Sober Christmas.

Timjonze profile image
Timjonze

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.

NadaDada profile image
NadaDada

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

Indigo42916 profile image
Indigo42916

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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