Water consumption

[mbr8076]

I get confused why we need to drink a lot of water:/ Is it because of the Hydrea we are putting into our body or because of the MPN we have been diagnosed with? Do other drinks like decaf coffee or tea count?

[WileyFrench]

My understanding regarding ET anyway is that water helps with mitigating the platelet “stickiness”, which helps prevent clotting. And re the hydroxyurea, I understand that water helps prevent mouth sores. It’s good to stay hydrated for both of those reasons. Coffee and tea actually have a diuretic effect so they don’t help with hydration. I hope that helps. Oh - and lots of water makes our skin look better too!😉

[Swede]

Well,coffee and tea counts as we now know it is not a diuretic drink. Just don't drink sugary or acidic drinks ...

[fee13]

Yes, water gives more liquid volume to the blood so it can pass through the smaller vessels a little easier. With MPN's the blood is thick and does not reach smaller veins/vessels and makes it difficult for the heart to pump around the entire body. This may be one of the reasons why a lot of people suffer from dizziness, cold fingers and toes etc plus some of these frustrating odd tingly/crawling sensations.

I drink decaf tea and coffee, they still contain small amounts of caffeine but not nearly as much as regular, but still need plain Ol' fresh water.

[mbr8076 in reply to fee13]

Thank you, fee13! I did not realize water helped with the volume of our blood.

[Rachelthepotter]

I aim to try to drink enough ( and I agree with Swede that the reseach now shows tea and coffee do count) so that my urine stays pale. The dark urine comes from the breakdown of the blood cells - caused by both the hydrea and ( in my case) the MF.

It is possible to overdo the fluid intake - not a good idea.

What counts as pale urine? I posted an NHS urine colour chart in the summer (can’t find how I did it now ) that had the jolly headline “ healthy pee is 1 -3, 4 - 8 you must hydrate. “

So, you can go by results. No need to drnk an arbitrary amount of water.

All the best

Rachel

[mbr8076 in reply to Rachelthepotter]

Thank you! My husband and I take multi

vitamins and extra D and my husband takes a joint supplement and both are ironed are quite dark within hour of taking them.

[fee13 in reply to mbr8076]

Vitamin B6 especially darkens urine.

[Wyebird]

Apparently in order to remove the caffeine a chemical process is required. Not sure how true that is. Redbush tea does not have caffeine in it. I find it pleasant. You drink without milk.

[mbr8076 in reply to Wyebird]

Thank you Wyebird! I actually drink both beverages black no sweetener

[Val_P]

Also many of us with ET experience the sweats, and need to rehydrate. Medication can also cause kidney problems, it is so important to keep flushing our kidneys to keep us healthy.

[mbr8076 in reply to Val_P]

Thank you, Val_P for take me the time to reply

[ashby6708]

What is the recommended water intake per day. I have ET, JAK2+, male aged 74 and where can I get hold of a Pee Chart?

[WileyFrench in reply to ashby6708]

I understand 1.5 to 2 litres per day is a good amount. It isn’t too hard to drink that much at all. Sometimes I have even more depending on what I’m doing.

[Rachelthepotter in reply to WileyFrench]

Here is a link to the NHS urine colour chart from Bedford hospitwl.

bedfordhospital.nhs.uk/2014...

[ksos]

Thanks for asking this, and thanks to all the answers. It's so helpful to have the reasons articulated so clearly -- helps keep me motivated. And, while I have been experiencing sweats, I didn't know that was one of the ET side effects, so that's good to know as well. I have definitely noticed that I feel better when I'm taking in the liquids -- and my skin does look better! Also -- if you google "pee chart", there are lots of options. Here's a link to one: redbubble.com/people/kelsor...

[katiewalsh]

Hi. As crazy as it may sound, you have to be careful not to drink too much water. I was advised by my doctor to cut back my fluid intake to 4 quarts a day. But I was drinking a ton of water a day. Katie

[bordeauxgirl]

Hi Everyone, I saw my Haematologist only last week and he told me drink as much as you can and it doesn't matter what it is 'tea, coffee, water, juices etc etc, just as long as you drink. I told him I've had a gastric bypass, so have a small pouche instead of the normal size stomach and so cannot drink as much as others, he just said have a small bottle of water with me all the time and just sip as I go. hope this helps others. Good health one and all.