Mpn:s and alcohol

[Bohus]

Good morning! Since my diagnosis a couple of months ago I think a lot about how a healthy and long term sustainable life style should look like for me. One of the things I think about is whether I should consume alcohol or not. I am curious about how you guys think about this. My question is therefor if you drink and why you made the choice to drink or not. And also if your choice has affected your symptoms? I wish you all a lovely day!

[Tico]

Hi Bohus, I no longer drink, nothing to do with my et jak2, more to do with my epilepsy and amount of medication I take overall. I do not think their is anything wrong with anyone enjoying a drink in moderation and unless you were on large amounts of medications I would say carry on and enjoy yourself. When your diagnosed with an Mpn you life shouldn't stop because of it. Some people decide to give up alcohol when diagnosed, thats a lifestyle choice. If you enjoy a tipple,carry on. Cheers.🥂 tina🤗

[Tylerdog1 in reply to Tico]

My consultant has always said to me - have my weekly injection (I’m on PEG Interferon) and then try and forget and live life as normal. All info says drinking in moderation is OK - I drink water before/afterwards as been told the alcohol itself does nothing but need to avoid getting dehydrated. Think for most people just finding out you have the condition makes you look at your lifestyle and how you can make it a healthier one. Hope you do OK

[Cambersand]

Doctors have said you can drink but In moderation. The word moderation can vary between people.

Since my diagnosis (ET) I have have not had any alcohol in 2 years.

My medication has gone up since my first diagnoses and I want to give my body the best chance by removing alcohol and de-risking any complications by having a drink.

The thing is I win bottles of bubbly in competitions and staff events at work 😂.

[Paul123456]

I drink about 3 bottles of red wine per week to compensate for my otherwise obsessively healthy life style (exercise and anti inflammatory diet)

[Osteomyelio in reply to Paul123456]

You mentioned your anti inflammatory diet before, Do you have a link or a guide to a specific diet that seems to help you? Thank you

[Paul123456 in reply to Osteomyelio]

Just google search anti inflammatory foods.

Basically minimal sugar, processed, refined carbs etc.

Olive oil and coconut fat. Lots of whole grains, veg, fruit (especially berries), fish. Green tea, ginger tea, coffee

Herbs, oregano and rosemary meant to be particularly good

Very dark chocolate (no sugar) - ideally cacao powder (I have sprinkled on my porridge!)

Organic veg/fruit if possible

Supplements I take magnesium, milk thistle, small amount Vit D, fish oil

Best Paul

[Hidden in reply to Paul123456]

Like you I eat obsessively well! And anti inflammatory. My treat is red wine . 2 small glasses a day but try to have a few days off organic an no sulphites ...

[Hidden]

I like Paul drink Red and white wine and occasionally gin and tonic. On average three to 4 glasses a week. Have ET, no meds apart from aspirin. No effects from it at all.

[Bohus]

Well I guess that it’s ok healthwise to have a few glasses a week. My concern is that since my diagnosis I tend to “need” it to relax....

[socrates_8]

Hey Bohus...

As can been seen by the responses you have drawn thus far... Everyone might have a different view or perspective... & that is precisely as it should be...

However, as we are all consenting adults here, we must also bear the consequences of the decisions we choose to act upon, is that not also true...?

It is a rather fascinating subject & topic from my own perspective.

Me? I used to absolutely adore my glass of the grape, & particularly so with my evening meal. Some times, I liked it a little more than I should have too... ;-0) (that nose was often a shade of red)...

Since having commenced my MPN journey, however, I like many of us here, have undertaken a great deal of research regarding MPNs, & more over... trying to grasp a clearer working knowledge of how and why having an MPN might impact on our health, & longevity...

In my own understanding, 'Inflammation' and how it might evolve in our human ecosystems, has a great deal to do the progress of MPN conditions...

Therefore, in order for me to sustain myself & stretch out my longevity for as long I can, I made the conscious decision to remove as many of the known causes of inflammatory impacts upon my system...

By the way, I didn't make that decision over night. Rather, I came to the conclusion after continually discovering that consuming alcohol made my recovery time after cycling so much longer, and riding itself was harder too...

Now, I simply prefer not to drink any alcohol at all because I simply feel so much better without it! It's really that simple...

Having said all of that... When, (IF?), I finally manage to undertake & complete my epic cycle event around Australia... I have told myself that I will have at least one night's modest celebration with a very nice grape & an extraordinary meal for its accompaniment...

(Incidentally, last year I cycled circa 12,000kms & to cycle around Oz I must almost double that & complete it in half as much time...)

There is absolutely no doubt in my own mind that the combination of my anti-inflammatory dietary regime, my exercise routine, intermittent fasting, and just generally not consuming much in the way of any processed foods... Has all contributed to me seeing a slight but significant reduction, (at a molecular level), noted when my bone marrow scarring reduced from Grade 2 to Grade 1...

All of those things mentioned above tells me that I am going to 'Live' longer despite having MF...

There is a cliche often misattributed as Einstein's definition of insanity that asks the question:

"What is the definition of insanity? Insanity is doing the same thing over and over again and expecting different results.”

Our MPNs are largely thought to be somatic, or acquired over a longer period of time & exposure to all the toxins in one's lifetime etc...

Hence, lifestyle changes become a mandatory feature in my sense of combatting this debilitating condition...

"... I am the master of my fate... I am the captain of my soul..."

Best wishes all...

Steve

[Hidden in reply to socrates_8]

Well said !!!

[Paul123456 in reply to socrates_8]

Steve

Hopefully you will live longer, it will certainly seem so without red wine!

I agree with most of your post but have found alcohol has no impact on my inflammation blood markers which are ultra low. I think we can get away with a few indiscretions and still be ‘fine’.

Best Paul

[socrates_8 in reply to Paul123456]

Hey Paul...

Yes, I am smiling, & I would be false if I said that I did not enjoy my past adventures of the 'Grape' & the sedate effect that a nice red has on me...

However, it was very much a gradual realisation, where pure logic ultimately won me over after some repetitive trial & error experiments of my own ...

In the beginning, i used to tell myself that having a wine each evening helped me sleep... But there were consequences to taking that erroneous action, (in my case...), and inevitably the alcohol contributed to my levels of fatigue, & with my constant anaemia, that just made life more of a struggle... When endeavouring to operate at higher levels cycling, (for a 60yo w/ MF), improving recovery times between & Post rides becomes an interesting equation...

I am always trying to listen most intently to what my body reports to me, (concerning what my real capacities are), as opposed to what my Narcissism, ego & stubborn wilfulness allows me to imagine of myself... In that sense, I believe that I am still growing up but I like to believe I am a tad wiser these days too...

In any event Paul, (as you well know), MPNs & the ways in which they can chemically impact upon us can & does vary with each individual. We are all unique in our MPN journeys of course... And of course, each of us also has a slightly different set of variables in play...

My endeavour of trying to grow & maintain my physical activity levels has been a real challenge & a struggle at times, throughout my MPN journey. Nevertheless, & in my own experience, total abstinence definitely works best for me...Most of the time, the benefits are obvious to me, & therefore to deny that knowledge to myself would be unwise...

Hence, while I am able to pursue this direction, I want to give myself & my body all the best help I can... It is a long way around Oz buddy...

Not sure if you've tried one yet, however, the Margaret River Reds from WA are a sensational drop... extraordinary really!

Steve

PS. Actually, any wine from the Margaret River region is usually amazing...

[Stevesmum42 in reply to Paul123456]

Great post Steve.

Your attitude and project that you have embarked upon (admirably) have focused your mind and resolve. Is so positive , and has produced an amazing outcome with the reduction of your scarring , and, certainly a much better state of mind, which is fantastic. Credit to you , you obviously have to push yourself hard, but you are reaping the rewards of your strength of mind and hard work.

Onwards and upwards, your determination will enable you to achieve your goal. (I just wish I had your strength of mind ) !!!

With best wishes Sandy x 🚴‍♂️

[mhos61]

Obviously, it’s a personal decision. I gave up alcohol when I was diagnosed (ET Jak2+). I was never a big drinker anyway, a couple of glasses of wine on a weekend, so it was no real hardship. Having said that, I did have a drink this New Years Eve, more to be sociable than anything else. But, I can honestly say I don’t miss it.

I think for people who enjoy a drink, moderation is key.

[Lifam]

Well, I have been on anti inflammatory diet like the Mediterranean diet, and watch careful about sodium n sugar intake, avoid saturated fat whenever possible. Keep cholesterol down and maintain good weight, keep active. Been feeling fine and my haematologist us happy with my diet. He said I can have a glass of red now and then but I have no need for it although it would hurt at all

[Lifam]

Sorry, I meant a glass now and then would not hurt.

[SuET2017]

I am on weekly pegasys. I generally (except for Friday night take away) eat healthily and drink water though out the day (without getting to drowning point) and I am quite active.

I drink alcohol when I feel like it, but I do find that a couple of G&Ts (I’ve heard it’s good for platelets :-)) is more than enough for me and I can feel unwell if I drink more. Everything in moderation and what suits you and how your body reacts I guess.

[Simris]

Hi Bohus,

Reply to your message, I for one cannot tolerate alcohol since diagnosis, even one glass of wine socially leaves me feeling unwell for couple days, perhaps just me! !!

[JackLina in reply to Simris]

You're not alone in that effect. I fancy a drink very occasionally but find I can o nly have about half a glass of anything before the dehydration affects me and I chuck the rest away.

It isn't a choice to avoid alcohol but a necessity. I do however feel and always have, pre diagnosis that I am more negatively affected by sulfites than the alcohol because my own home made wine does not affect me the same way as bought .

[jillydabrat]

Good morning. When I was young, so many years ago, I was a right sos pot. I would be out until 2 or 3 a.m. most days and then had to struggle up to work. I don’t know what was the turning point for me but I just stopped. Not a drop has passed my lips in at least 30 years. I was even the designated driver at my own wedding. Alcohol just doesn’t interest me anymore but I am not bothered if friends drink, after all it’s their choice. Since the last 15 years or so I would not drink because of my medication.

[Threelions]

Hi,

I still enjoy a drink-beer or wine. Not as much as I used to partly because of my ET, but also because im getting a bit older😀

I have found it absolutely essential (post ET ) to drink water. For example , when I go out say to the pub with friends I won’t drink more than 3/4 pints. After my second I have a pint of water or lime cordial and then have another beer or 2. Then plenty of water when I get home.

Consultants in general, as others have said, say it’s ok, as long as we don’t overdo it.

A good friend of mine (from way back at school) is a medical professor and he always maintains that, in moderation, alcahol eases the symptoms of stress and that bearing in mind stress is the direct and indirect cause of many serious conditions he’s adamant the benefits of alcohol in moderation out weigh the negatives.

Cheers 🍻

Mark

[josup26]

Hi Bohus,I can't really give you an answer as I don't drink. I see however, post that folks drink less I would assume a it's the better option in general. Regards!

[Hildrethbird]

Oh dear, am I the only odd one out ?!! Haven't changed my drinking habits at all, loving life and had the best Christmas ever.... opps!! sorry Xxx

[WileyFrench in reply to Hildrethbird]

You’re not the only one! I haven’t changed my drinking habits either.

[Tico in reply to WileyFrench]

Hi WileyFrench. Good on you. Even though I don't drink,Et shouldn't mean your life and enjoyment stops. Each and everyone to their own is my motto! Atb,tina.🤗

[Hopetohelp]

Yes I love a drink too but have cut down. For me it’s the balance of relaxing at the end of the week and letting my hair down a bit and being ‘normal’ for me. On baby aspirin and ET diagnosed last year. Drink water in between each glass to help prevent dehydration

[Manouche]

According to some studies, the maximum consumption shouldn’t exceed one to three glasses of wine per week.

[Bohus]

Hey everyone! Thanks for all of your interesting comments!! I have decided to quit alcohol for a month a see if it has any impact on my symptoms and my mental state. Wish me luck! And have a wonderful day!

[Manouche in reply to Bohus]

It should help. Do you have elevated transaminases ?

[Louise2870]

Hi there, it’s so interesting to read all of the different responses and experiences with alcohol.

Personally I have been through all of the above! I was diagnosed a year ago with polycythemia Vera jak2+ and I was really poorly for a few months until I had many venesections and started on chemo etc. When I started feeling better I used to fancy a drink but didn’t actually enjoy it like I used to- which was annoying!! Then I gradually began to enjoy certain drinks but couldn’t have anything fizzy - my favourite Prosecco was off the menu and I was devastated! However a year on and I’m pretty much back to normal-ish but drink extra water before, during and after having any alcohol.

Everything in moderation works for me 👍🏾 Think we all just need to find our own “ normal” and go with it!

Good luck and cheers 🥂🍾 xx