How much daily water should I drink on Pegasys?

[Na56]

Hi everyone I will be starting Pegasys in 10 days time and see that the MPN Voice leaflet says to drink 3 litres of water daily. I do drink a lot of water but that amount seems huge. Do you Pegasys veterans drink that every day or just on injection day? I would appreciate your advice.

Thank you Irene

[hunter5582]

I drink at least 64 oz (2 liters) of water + 32 oz (1 liter) of coffee/tea/other beverages (mostly non-caffeine) every day. Hydration is important for everyone, particularly as we age. Aging kidneys are not as effective and need the additional hydration to function properly.

Immediately prior to starting Pegasys, my eGFR had dropped too low. After assessment, it turned out I just needed to drink more water, even though i thought i was staying well hydrated. Making a concerted effort to ensure more hydration returned the kidney function numbers to the normal range.

Hydration is also important for anyone with a MPN, even more so when we are taking cytoreductive treatments. We need to give our bodies all the help we can to process the medications, which reduces the associated risks.

Wishing you all the best moving forward.

[Na56 in reply to hunter5582]

Thanks Hunter. That all makes sense. I’ve just measured how much my glass of water is and I’ll now count my daily glasses. All the best Irene

[Spanelmad]

I make sure to drink 2 litres daily.If I do not it's a severe headache and brain fog.

[Na56 in reply to Spanelmad]

I do manage 2 litres of water per day but another litre on top seemed a bit daunting. I don’t want headaches so I’ll keep drinking. Kind regards Irene

[Spanelmad]

You'll soon I'm now if you need to increase your intake, let us know how you get any on.

[Joetcalr]

Hiya, I measure water out each day and let it stand to disperse the chlorine, I’m not very big so I reckon on 2 and half L per day and milk/juice/vegetables on top. It’s easier to drink water in quantity if it’s just above room temperature.

[Na56 in reply to Joetcalr]

That’s interesting. Thank you Irene

[Anag]

3 liters is good. During my morning routine, I drink 1 L before I go to breakfast. This is how I do it and why.

During the night, we lose a lot of body water through breathing and also sweating. Our body is cleansing itself, including our brains, which basically get washed out overnight and also our liver. These processes use up water. Everyone is lowest in hydration in the morning

If you have pills or supplements to take in the morning (like aspirin, Vit C, CoQ10, etc) it’s super easy.

I have a 1l bottle in the bathroom that is filled up and ready to drink at room temperature.

Firstly, I prepare my intestinal bacteria powder in 300ml water and let it sit so the bacteria can multiply.

I drink an alkaline powder (potassium, calcium, Mg, Z, D3, B1 Silizium) with 300ml water this keeps the acidity in my body low, which is good against all inflammation

I start my morning routine

10” later i take my thyroid hormone with 300ml of water and continue my routine

15-20” later I drink the gut bacteria.

Then I start preparing breakfast.

always drink a full glass 10-15 before meals. Much less during to not disrupt your digestion. Too much during meals will thin out the stomach acid and slow down digestion eventually causing heartburn, reflux and fatigue. Just a little bit of water after the meal to clear the oesophagus is good.

Good luck. Hope to have helped.

Anag

[Na56 in reply to Anag]

That’s very helpful Anag. Thank you Irene

[Anag in reply to Na56]

I’m glad! Have nice weekend!

[Scarlett500]

Hi. Ive been on pegasys for about 6 mths and try to drink at least a litre of water but i also have several decaff coffees a day too. I have also stopped drinking alcohol. My side effects of having brain fog and fatigue on the monday ( day after injection) seem to be diminishing. My platelets are now in target so im going to ask if i can reduce frequency. Good luck

[Na56 in reply to Scarlett500]

Your story sounds very positive. Thank you for your reply. All the best Irene

[ainslie]

3 litres seems quite a lot, my urologist reckons about 2 to 2.5 litres for a non Peg person, if drinking a lot of water it can deplete sodium etc, so maybe wise to keep an eye on those if drinking 3 litres or so. As we are all different one could experiment to find the right dose of water.

[Na56 in reply to ainslie]

Yes I will experiment. Thank you for your reply. Kind regards Irene

[Janis12]

Hi Irene, I have no idea how much I drink daily but most of it has a decaf tea bag in it. I drink a lot of water when out cycling and at my exercise classes but then I am loosing a lot through sweat. I have only once had a headache after my peg injection so I assume I am taking plenty of fluid on board. Hope it all goes well for you, I am about 6 months in now for my peg experiment and have remained on the same dose 45mcg every two weeks and reducing hydroxy very slowly, platelets have been up and down a bit but we are just taking it slowly...suites me. Best wishes.

[Na56 in reply to Janis12]

Hi Good to hear that you’re getting on well with the Pegasys . I’m just changing to decaf tea in readiness for my jabs.All the best Irene

[Lilypen]

I have been advised to drink around 2 liters (which includes all drinks) as my sodium is inclined to be borderline low. So watch for that.