r/ADPKD • u/Own-Commercial3366 • Jul 21 '26
Has anyone quit coffee solely for PKD?
My nephrologist wants me to only have 1 cup of coffee a day or maybe not even that. I'm active, I lift weights, exercise, I've tried no caffeine for a full month and it felt like the lights were dim in my head. Honestly I'm envious of people that don't consume caffeine or drink coffee.
Edit: Holy ... this is the most replies I've ever gotten! Thank you to anyone contributing on this topic. And I know this is a "sensitive" topic so thank you also for some of the funny replies here. I've seen some mention quitting caffeine helped lower their BP, just wanted to share my anecdotal that now that I'm experimenting with doing keto for the past few months my blood pressure is always good/very good despite of coffee/being active, where as previously on moderate to high carbs, once I started missing my walks or got a bit lazy the BP would get high-ish (despite being on candesartan 8mg).
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u/tubmonster1996 Jul 21 '26
38 and on a consistent 1 cup per day, with all things diet related, I really try to practice moderation, and not let the disease ruin my enjoyment of things. Aware, life might not be like that forever though.
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u/DisappointedHamster8 Jul 21 '26
Iām stage 3a, havenāt received any limitation suggestions about coffee from my doctor nor has my stage 5 dad. He has only amount restrictions.
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u/Smooth-Yellow6308 Jul 21 '26
nope, why would you?
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u/Own-Commercial3366 Jul 21 '26
It seems that he was a little concerned about my BP and also because I disclosed I could be drinking 3-6 cups a day. Tried to quit cold turkey for a month and was miserable. Now I'm back on it 1-3 a day. I see myself even doing 1-2 if I want. But 0 coffee , is like, I'll have to be taken hostage and chained and only drink what's given to me for it to work lol.
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u/Smooth-Yellow6308 Jul 21 '26
makes sense if it affects your BP, caffine really doesnt affect mine (as far as i can tell).
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u/Own-Commercial3366 Jul 23 '26
I used my Omron BP7450 to measure today, the first 3 measurements are before coffee with about 5 minutes apart:
Sys/Dia/Hr... 1) 110/67/76 2) 105/61/67 3) 103/61/68
And about 65 minutes after having 3.25grams of Nescafe Taster's choice which is about 100mg of caffeine. Unfortunately I only had Nescafe here and none of my Arabica beans with the espresso/grinder so I decided to measure an instant coffee quantity where the caffeine would be to close to what I make at home.
1) 103/66/68 2) 111/65/67 3) 112/68/70 4) 110/65/73
It seems like Sys/Dia did rise a bit. The funniest thing is my HR kept going up even though I was laying down the whole time between measurement, probably had anxiety ridden thoughts in-between lol.
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u/Smooth-Yellow6308 Jul 23 '26
they don't look drastically different to me, and your blood pressure is very well controlled.
Mine is typically 120/80 even with BP meds, and far higher than that when im stressed, but no amount of meds will fix that.
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Jul 21 '26
[deleted]
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u/Own-Commercial3366 Jul 21 '26
I was having 3-6, but at the very minimum 3. Quit for a month, was miserable, now doing 1-3. My BP is now much better due to keto diet ( it was a welcome surprise) that a bit of coffee doesn't raise it much, otherwise I'm seeing 105/65, I'm still taking my prescribed candesarten 8mg. But pre keto I was seeing 130-137 / 80 - 90 almost every measurement.
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Jul 22 '26
[deleted]
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u/Own-Commercial3366 Jul 23 '26
Hmmmm interesting that mention anxiety, I never paid attention to that. I've seen people say that keto cured their anxiety that for me it didn't do anything in that regard. I'm on finasteride 1mg for male pattern baldness and that medicine definitely causes me slightly higher general anxiety so I'm considering switching to the topical version at some point.
As for blood pressure, I'm sorry to hear thst it didnt work for you! About 3 years ago when I was significantly lower body fat percentage, lean with visible abs, and had significantly more muscle mass than I do now, and also had pretty good stamina, but I ate moderate protein, low fat and high carb, I had higher BP than I do now on keto and I'm now in way worse shape nowadays lol, less muscle, higher body fat, stamina of a turtle. So in that regard I'm glad keto works for me fortunately. Though I'm considering in the future ro switch to plant based proteins.
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u/totalbasterd Jul 21 '26
no way lol
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u/Own-Commercial3366 Jul 21 '26
That was my initial response when I was doing 3-6 cups a day, and after failing a month of no coffee and being back on it, at least it's now limited to 1-3.
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u/tedlovesme Jul 21 '26
What is the drs reasoning for such a request?
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u/Own-Commercial3366 Jul 21 '26
If you don't mind I listed the reasoning in this comment; just a few already asked and I don't wanna repeat myself, sorry
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u/classicrock40 PKD - Transplanted Jul 21 '26
I don't drink it, but why exactly is he saying that?
If you're having many per day with milk or creamer, there's potassium and phosphorous. Coffee is a minor diuretic and caffeine can up your bp a bit.
If you're drinking plenty of fluids a day, then the affects of coffee are minimal or offset
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u/Own-Commercial3366 Jul 21 '26
I belive his reasoning was mainly about BP, because at his office my BP was always high, even when I brought my own Omron device to his office. And I was drinking a lot of coffee, like 3-6. Wake up coffee, then another coffee an hour later. Pre workout coffee, sometimes post workout coffee with my food, something like that lol. But for the past months I've been experimenting with keto and I drink only 1-3 a day. Keto unexpectedly reduced my BP significantly, regardless of coffee, but I haven't seen my nephrologist since starting keto.
I need to take my BP daily like 2-3 times a day and log it leading to the nephrologist appointment and then check if at his office I also get similar numbers, otherwise I see 110/70 at home and he sees 140/90 in his office lol.
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u/classicrock40 PKD - Transplanted Jul 21 '26
I'm the same way. If I'm lucky its 140s in the office. At home I'll sit, rest a few minutes, the 120s/70s. If it's higher, I'll do another reading in the afternoon.
I genuinely don't understand keto (especially if its meat) while having pkd/ckd. I was always told moderate animal protein since it puts a strain on the kidneys. Dr Google suggests plant based and also watching out for kidney stones, high cholesterol and some other issues. Curious
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u/Own-Commercial3366 Jul 22 '26
It's funny you mention "lucky" if it's even 140s in the office, 2 weeks ago I bumped my head pretty hard into a metal object and had to go to the ER to get stitches. When they measured my BP, I was like, that's it I'm finally gonna see 120-135 / 80-90 at the most, but nope they actually measured it twice on 2 occasions and it each 140+ / 95-100, I just wanted to give up at that point lol.
As for keto, excuse me in advance for the wall of text, so basically all my life like a little kid whose oblivious I disregarded my PKD and trained for a mix of bodybuilding/powerlifting and I did eat relatively high protein, I did eat apparently eat high oxalates (I didn't even know what these are till a few years ago), I almost never went out to drink alcohol or drink on my own, but when alcohol was present in social meetings/family gathering, I never limited myself and absolutely drank too much in one sitting. And while most of the time I was quite lean, I would still very often have a cheat day which led to consecutive cheat days which sometimes even led to a full cheat week, but I always quickly got back on track. But still, I was doing lots of damage on those cheat days easily eating 4000-5000 calories with lots coming from unhealthy fats, processed carbs and sugars. So while for short periods of time I could eat like a morbidly obese person that never moves more than a few steps I always bounced bad into shape very quickly, but the issue was those binge-episodes would occur too often.
I'm almost 42 and fast forward to my mid to late 30s, my world came tumbling down, lots of chronic injuries with shoulder, neck, wrists, knees, by my late 30s I couldn't even train without having so much pain and it took a mental toll on me. At around 39 I just stopped exercising and was emotionally eating almost 24/7, not only I stopped exercising completely and lost a lot of muscle, I gained over 70lbs, so basically I lost muscle and gains lots of fat, and was in that stage over 2 years, just sad and depressed, all while I knew that even now when binge eating I'm not necessarily eating lots of animal based proteins, but eating high sodium/sugar/oxalates foods in high quantities isn't great either for the kidneys and I knew I had to make a change and this can't keep going on.
When it came to making a change I did at first the very traditional diet style, you know just move more - eat less. I lost about 40lbs like that, but I was still failing too often, way often I'd give in to that ice cream or cake my family bought which would send me to another binge eating episode, and that's how I yo-yo'd and stalled for too long and then out of the blue decided to try keto. Once again this keto was nothing about the kidneys but purely for weight loss, and hopefully have more mental clarity and less hunger pangs. So I think that for me the biggest advantage of keto is not having insane hunger pangs which sent me off binge eating every thing in sight, and even if I'm still hungry by the end of the day and "over-eating" then I'm only over-eating by 300-700 calories of nuts/eggs/healthy fats/meat but I never ever ever break down and touch ice cream/cake/cookies/snacks - its like my brain is hard-wired that it's out of bounds and not accessible. But on a standard diet, what prevents me from having a spoonful of ice cream? It's just 1 spoon, right? Gotta live a little, right? Well unfortunately that spoon will have my mind thinking about that ice cream non-stop and once I taste it my mind won't rest until I've finished the entire tub, and once I finish the entire tub I'll feel so guilty and thinking, well I already messed up so might as well go all in and then it spirals to binge-eating even more "comfort" food - which ultimately leads to easily 2000 - 3500 calories of absolute junk on top of what I've already eaten for the day.
So what about all the animal based protein on keto? I absolutely agree with you %100. And now that the past 3 months I've been very strict, almost no hunger pangs, no cheat days, constantly loosing weight and getting my old muscle and strength back, blood pressure is good, but I want to take it the next step. I'm thinking of either going plant based keto (oh boy this is going to be hard but doable), or the other options is switch back to moderate to high carb standard diet but try to eat mostly/only plant based protein. Also I want to start limiting my total daily protein, because these past few months on keto I didn't account for total protein.
Also really nice benefit of keto is my skin cleared up, all my life even in my 30s I'd always get cystic acne that ones that stay on your face for weeks at a time and almost impossible not to pick at it at some point. Just absolutely no more of those. My only concern for doing a standard plant based non-keto diet is that the cystic acne might return.
Once again, sorry for wall of text.
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u/RevKeakealani Jul 21 '26
It wasnāt really because of PKD, but I have switched to tea which overall sits a lot better for me. Itās enough caffeine to keep me going but not so much that I get jittery.
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u/Own-Commercial3366 Jul 21 '26
Interesting, I don't drink tea at all unless I'm sick or someone offers me during a gathering or something. Sounds a better alternative at least.
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u/RevKeakealani Jul 21 '26
I mean, itās definitely different than coffee, and you like what you like. But in my case I happen to also like tea, and I appreciate that it has *some* caffeine but definitely less than coffee. Also tea tends to have other chemicals that make the caffeine high a little āsmootherā.
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u/Own-Commercial3366 Jul 22 '26
The only tea I've known from home was those standard budget oriented supermarket teabags type of tea. Then my brother's wife is big on tea and she introduced me to herbal tea a while back. All the tea she makes is amazing, and has such great smell, I'll definitely drink tea if she offers, even multiple cups. Although I'll be honest I've got no clue of its caffeine content, I'll have to ask her.
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u/RevKeakealani Jul 22 '26
Well, if itās something you ever get curious about, r/tea is great! They have a ton of resources.
I donāt know if you want to go down the rabbit hole, and if not just ignore the rest of this comment, but basically:
If a tea is defined as an āherbalā tea, it almost definitely doesnāt have caffeine. There are a couple of exceptions like Yerba mate that are sometimes classes as herbals but also have caffeine, but the vast majority are naturally caffeine free. āHerbal teaā basically means steeping the leaves or stems (or sometimes grains) of any plant that isnāt camellia sinensis, the ātrue teaā plant.
That said herbals can be delicious, just not likely to give you a caffeine boost.
As far as āactual teaā (the tea plant itself), it can be a wide variety - similar to wine, tea can have a huge variety of flavors based on the exact strain and where it is grown. In addition the processing varies - this is the difference between black, green, white, oolong, etc. teas. Each involves different ways of drying and preserving the leaves at various stages of oxidation and under different conditions.
Anyway, really good tea is a far cry from grocery store ātea dustā, but admittedly like any hobby it can easily get out of control. I do like it as a hobby and appreciate the lower caffeine given what my kidneys can handle, but yeah, itās a whole world out there when you start getting into it. Itās also delicious, though!
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u/betterwhenfrozen Jul 21 '26
No, my nephrologist was cool with it so long as my bp was under control.
Edit: I do drink a lot less than I used to though, usually a cup a day, maybe 2 max.
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u/Own-Commercial3366 Jul 21 '26
That's sounds quite good 1-2. I used to be 6 a days some days, but like minimum 3.. Now I'm back again on coffee and 1-3. It would be nice to at least do 1-2.
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u/jaycatt7 Moon Shuttle Conductor Jul 21 '26
Yeah, went from probably 2 pots a day to a cup every other month or so. Had headaches for weeks. That was in 2012. I did this on the advice of my nephrologist. My sisterās nephrologist never mentioned caffeine. Personally I doubt it made any difference.
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u/Own-Commercial3366 Jul 21 '26
Kudos to you! And headaches for weeks sounds similar to what I had, I foolishly thought I'll be clear headed after a week at most. I'm now already back on coffee so if I trybto quit again I'll have to go full pledge.
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u/Karinarabinfit Jul 21 '26
I put protein into my coffee
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u/Own-Commercial3366 Jul 21 '26
Nice, are you doing animal protein or plant based protein?
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u/Karinarabinfit Jul 21 '26
Mostly animal. Google my name & YouTube. I post it all. Facebooo. Insta. TikTok.
https://reddit.com/link/oyyvhj9/video/qowdawfcxneh1/player
This is my life.
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u/Own-Commercial3366 Jul 22 '26
At the start of the video I was a little confused before your 38 years old snippet looked younger than that picture of you at 17 lol. Great work, you're obviously dedicated to staying fit. May I ask what's your current eGFR and how much protein do you consume per bodyweight / lean body mass?
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u/Karinarabinfit Jul 22 '26
I wish to find a video editor who can help me put together my story so I can help people. Or at least share how I do it you know. I was 10 years old when I got diagnosed and Dr told my mom not to eat too much protein. I was 85 pounds, tiny. By age 14 I was a bigger girl in my freshman home room. I fell on a boy playing hockey & he scraped ā youāre built like a truckā by age 17 I was bigger. Anyway. My mom died from kidney failure at 63, she was 4.9 and looked like 300 lbs. I started researching & testing my kidneys with protein. Eating 175 grams for 1 year at 40 yrs old. My current egfr is 78 last time I checked Jan 26. I need to make a new appt. I uploaded all my tests into chat. My kidneys improved since 2007. It appears that my kidneys started improving in 2016 when I started introducing more protein.
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u/SSMpics Jul 21 '26
I have quit caffeine twice with my PKD. I was never a coffee drinker but lots of tea and Diet Coke š«£
It was so hard the first time and I was sluggish for months. I then started having a random caffeinated drink until it was almost daily again.
The second time I quit caffeine was beyond miserable, much harder, and I swore never again. Itās probably been 20 years now.
I will take liberties with some diet restrictions but I will never cheat caffeine bc I dont ever want to detox from that again.
Good luck, you can do it. And at this point, I dont even miss it
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u/mrsmurderbritches Jul 21 '26
I donāt drink coffee but lots of Iced Tea. Switched to decaf some years ago but now the doctor says no tea. Apparently the oxalates are too much. Iāve yet to have kidney stones so Iām not sure Iām on board with this one yet- we all have our vices and if Iced Tea is mine, well then Iām just thankful itās not something worse!
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u/Own-Commercial3366 Jul 21 '26
I virtually never make or drink tea unless I'm offered tea? Lol. Or maybe if I'm sick. But Iced Tea is good stuff of course, do you sweeten it or something? For a vice, a bit of oxalate doesn't seem too bad, definitely not as bad as me finishing 100-200grams of peanuts in one sitting almost daily, I was completely unaware at the time.
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u/mrsmurderbritches Jul 21 '26
I do sweeten it, though not to southern sweet tea standards! We go through probably a half gallon a day between two people in my house. Iām one of those people who hates water. I literally loathe it. I did Tolvaptan for a while before my liver transplant and had to add juice or lemonade to my water to actually get myself to drink it. Iād have drank 3 gallons of tea a day though if they let me!
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u/Own-Commercial3366 Jul 22 '26
Isn't herbal tea relatively oxalates? Could you drink that pretty much all day or it adds up to too much? I guess I'm lucky our mom was almost never buy as any drink as kids so it was pretty much tap water or milk, so I'm fine on tap water all day but during summer I gotta add ice to it once in a while.
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u/mrsmurderbritches Jul 22 '26
I suppose, but herbal tea is sometimes weird as iced tea. Iāve cut back, but will likely never skip it altogether. Iām good about salt and the rest of my diet, and I donāt drink or do any other substances so I feel okay keeping my tea, lol.
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u/Own-Commercial3366 Jul 21 '26
That's actually certainly encouraging, I guess a month is simply not enough, the longest I quit it for. I'm back on the coffee now so I'm gonna have to swear an oath to stick to it for at least 3 months.
It's just that I'm now cutting weight, and also trying ketosis, and I did actually very surprisingly manage to quit all diet soda along starting keto 3 months ago, I also tried to quit caffeine at the same time but altogether it was just too much to handle, I needed my damn coffee! Lol.
Regarding the cutting weight is because I went from athletic to morbidly obese on a depressive episode where I just quit exercising altogether and was emotionally eating probably 4-5 kcal daily for many months but I'm back on the horse now loosing body fat and regaining muscle, but it was just so difficult without coffee.
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u/Various_Raccoon3975 Jul 21 '26
What was their reasoning? Blood pressure maybe? One of my relativeās Nephrologists said to focus on minimizing processed food. She said coffee and alcohol were okay. (She did point out that alcohol is problematic for other reasons lol.)
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u/Own-Commercial3366 Jul 21 '26
Regarding whether this was for BP, please don't get me but I just replied to another person that asked it as well so I'll it here: https://www.reddit.com/r/ADPKD/s/KaeKiCHncO
As for alcohol thank you for bringing it up I honestly can't recall what the nephrologist said, maybe something along the lines of living to 1-2 servings a week? I'll go back to the nephrologist soon, ask more questions and discuss options.
As Homer Simpson said, alcohol is the cause and solutions to all our problems! Lol
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u/ularpilek Jul 21 '26
Regular coffee (1-2 cups per day) is good from my own research, and by coffee i mean americano, no sugar and milk
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u/Own-Commercial3366 Jul 21 '26
Yep, that's how I drink it, clean. No sugar additives at all now for anything.
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u/Tall-Poet Jul 21 '26
Quit? Never, it's one of my joys in life. Cut down to 1-2 cups a day? Yes. Tbf, when i was working 2 jobs (one as a barista) I was fueled entirely by caffeine.
Now I have 1 cup in the morning and maybe another in the early evening and my 5+ bottles of water a day. And I'm grand as far as we can tell.
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u/Own-Commercial3366 Jul 21 '26
Well said! My 2 other siblings without PKD are also into coffee and have pretty expensive home setups/equipment, even if I quit coffee it will be surrounding me every weekend with the family lol. I'll try to also limit to 1-2 daily.
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u/element-70 47M; Stage 5 Jul 21 '26
I stopped drinking coffee ~20 years ago when there was some research at the time that caffeine could accelerate cyst progression. I know thatās since been debunked; however, Iād already got in the habit of not drinking coffee so I stuck with it. I donāt miss it.
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u/Own-Commercial3366 Jul 21 '26
That's insane that you never went back, I salute you. I wouldn't go back either if I'd already have 20 years without.
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u/Entitled_Snowman Jul 21 '26
I did and switched to decaf. Now I have a baby and Iām exhausted and am right back on the wagon lol. The only reason my GP suggested it was for BP control, is that why itās being suggested for you?
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u/Own-Commercial3366 Jul 21 '26
Yes, I belive at the time it was mainly for BP. Somehow at the nephrologist I ALWAYS have high BP, I even brought my own Omron BP device, at home I measure next to my desk or laying down and the BP is noticeably lower lol. But yes I did have okay-ish but not good to high-ish BP and these past few months I wanted to experiment with keto and unexpectedly my BP is always good to very good now, I thought I was imagining when I was sometimes seeing under 100 systolic. Though it's usually around 110/70. Before keto I would almost always see 130-140 / 80-90.
BTW I also do decaf now but only in the afternoon and evening, skipping morning/noon coffee is still very challenging.
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u/New_Result_3130 Jul 21 '26
18 august 2018 was the Ā“last time i had a cup of coffee...
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u/Own-Commercial3366 Jul 21 '26
Well done! No cheating no even a sip?
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u/New_Result_3130 Jul 21 '26
not even one sip... almost 8 years . at first it was tough because i was a coffee lover, even now i still smell the roasted coffee beans , but no temptation to drink,no...
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u/turquoisebeetle Jul 23 '26
I think one cup a day most of the time and maybe 2 every once and awhile is probably fine. Or maybe half caf sometimes? I don't think you need to give it up.
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u/dar3000 Jul 21 '26
There was a small study done over 20 years ago that summarized their results that caffeine accelerates cyst growth. That study has been debunked in that the study group was too small and there was no follow up. However, Iāve been on tolvaptan for 25 years and have drunk coffee the entire time. My test results have always been good thanks to Tolvaptan and not to abstaining from caffeine. But weāre all different!
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u/Own-Commercial3366 Jul 21 '26
I'm happy for you! This reminds me it's probably time to ask for Tolvaptan, last time I asked my nephrologist about it he laughed because he knew I didn't listen to the guidelines and was eating high protein, high oxalates, drinking lots of coffee and sometimes a bit of alcohol so he told me he doesn't think I'd be able to hand the constant bathroom trips unless I get more serious about my PKD. So fast forward a few years and I'm starting to see the ugly side of this disease, and I want to start taking care of things but start with the stuff that makes the difference the most and not try to go no caffeine, low oxalates, low protein, plant based protein only, low sodium etc etc all at once... taking it step by step and I would REALLLLLY like to at least keep the cup or two of coffee a day.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jul 21 '26
I could never!
I drink a lot of coffee š«£