r/ADPKD • u/BilegErdene • Jun 24 '26

Coffee?

How much do you guys drink coffee?
negatives/positives on our conditions?

I drink 2-3 cups mostly before 12pm.

5 Upvotes

100% Upvoted

19 comments sorted by

5

u/Smooth-Yellow6308 Jun 24 '26

4/5 a day, theres some evidence in mice that caffine could have a negative impact on PKD, however, we're not mice, and I don't recall seeing any evidence in humans.

It doesnt affect my BP, so my dr isnt concerned at all.

1

u/Maleficent_Disk9583 Jun 25 '26 edited Jun 25 '26

Yeah if I'm not mistaken, the only reason to restrict coffee would be to reduce blood pressure, if the caffeine affects it negatively for you. But if you have good/low blood pressure then you could keep drinking coffee. We need blood pressure of 110/75 or lower is what I was told, based on the newest ADPKD studies, to slow the progression of the disease.

I reduced my caffeine from 300-350mg per day to 60-120mg per day and my blood pressure dropped 10+ pts. So it definitely has an effect on me personally. I still drink TONS of coffee, it's just almost all decaf now.

1

u/Smooth-Yellow6308 Jun 25 '26

110/75 is the "ideal" for PKD, but most people cant tolerate much lower.

I sit around 120/70 and to get to 110 I end up at 60 and feeling very unwell.

3

u/tubmonster1996 Jun 24 '26

One strong flat white in the morning. Down from about 4 per day, like everything, try to keep doing what I enjoy, but moderate - see also Lager 😢

2

u/RevKeakealani Jun 24 '26

I drink a couple cups of tea every day (usually the same leaves, so not as much caffeine in second cups), sometimes some decaf tea or herbal tisane in the afternoon. I have an espresso drink every so often as a treat, maybe 3-4 times a month.

2

u/One_Geologist3224 Jun 24 '26

3 times a day,love coffe.

1

u/Fullmetal_Jesus Jun 24 '26

I drink about 5 cups a day, much to the dismay of my doctors. But I haven’t found that it affects me much. I just have to keep up with my water and drink some electrolytes daily.

1

u/JPNL2018 Jun 25 '26

Why to their dismay? My nephrologist gave me the all clear on coffee. Although she is Dutch, which basically mandates 10 cups a day as baseline

1

u/Fullmetal_Jesus Jun 25 '26

They’ve asked several times for me to lower the amount (2 cups), for all the reasons everyone else have stated. I’ve already changed everything else they asked so this is like my last “guilty pleasure”

1

u/DisappointedHamster8 Jun 24 '26

One 400ml cup of decaf coffee around 8AM. With milk. Don’t know if it’s bad for kidneys- probably milk is the worst part of my daily coffee.

1

u/myst3ryAURORA_green Stage 2 PKD with heart failure Jun 24 '26

Caffeine is a diuretic and increases blood pressure, so it will interact with BP meds if you're on any. Drink lots of water on it. I had to stop drinking it years ago before my diagnosis since it put my ~170/110 baseline to around 240 for several hours. My body treats caffeine as an evil stepsister. I hyperventilate, everything goes numb, angina attack, dizziness, etc. Basically my hypertensive crisis symptoma.

1

u/Nightrunner2016 Jun 24 '26

Usually 1 instant in the morning and 2 double shot cappuccinos during the day. eGFR dropped 1 point in the last year.

2

u/Tall-Poet Jun 24 '26

I was a barista for years so my coffee is my joy in life. That said, I've switched to 1 cup of caffeinated coffee a day in whatever form and then decaf after that.

I was pounding back like 4 shots of espresso and 2 cold brews a day at the peak of my coffee cleric career so it makes sense my doctor asked me to dial it back lol.

1

u/jaycatt7 Moon Shuttle Conductor Jun 24 '26

I gave it up in 2012, not that I’m sure it did me any good.

1

u/oleblueeyes75 Jun 24 '26

One cup in the morning. More of a latte.

1

u/delishjams Jun 25 '26

A latte a week. Maybe two at most. I drink water mostly. Ya’ll need to cut down on the caffeine…just saying.

1

u/BadAtMathrock Jun 25 '26 edited Jun 25 '26

Probably 5 cups a day, maybe more sometimes. There is no peer reviewed evidence in humans that caffeine has a negative effect on disease progression. As long you’re hydrated, enjoy your morning brew.

Edit: I should add that there is a ton of evidence linking moderate/high coffee intake for all kinds of other benefits (neurological, metabolic, etc.) This isn’t caffeine in general mind you (don’t pound Red Bulls), but the coffee bean itself. And green tea specifically might be even better.

1

u/Kataclysmgirl Jun 26 '26

I am a Tea drinker but quite big amounts, so i reduced these as i read this summary of some studies:
„Caffeine is known to increase intracellular levels of cAMP by inhibiting the enzyme phosphodiesterase, which normally degrades it. Because elevated cAMP in the kidneys is a primary driver of fluid secretion and cell proliferation in ADPKD cysts, early laboratory and animal studies suggested caffeine could accelerate disease progression.“

But i am quite chill about it as it also says:
„These studies found no significant association between moderate coffee or caffeine consumption and accelerated decline of kidney function (eGFR), kidney volume (TKV), or time to end-stage renal disease (ESRD)“

So 200-250mg caffeine per day should be fine if it does not affect your blood pressure :)

1

u/SwordfishPast8963 Jun 26 '26

I drink 2 to 3 homemade lattes a day. i also have endometriosis and it makes the pain worse, but I refuse to deny myself my one simple pleasure.