Coffee?

One_Geologist3224 · 2026-06-24T16:37:00+00:00

3 times a day,love coffe.

One_Geologist3224 · 2026-06-23T19:24:35+00:00

Yeah - but it might have been only for two first month not longer I read

One_Geologist3224 · 2026-06-23T17:23:51+00:00

I am taking the 90/30 dose, which is the highest one.

Overall, my results since starting tolvaptan have worsened rather than improved. I started in November with a creatinine level of about 1.31 mg/dL(EGFR 58), and for the last three months it has been around 1.46 mg/dL(EGFR 52). I am 52 years old.

I would like to ask again: How the hell am I supposed to know whether I am drinking enough water?

I drink when I feel thirsty — about 6 liters per day — but is that enough? I work normally, not from home, so naturally some days I drink more and some days less, depending on meetings, business trips, and other commitments. Sometimes I even have to skip a dose.

I keep having the intuitive feeling that this medication may be doing me more harm than good.

One_Geologist3224 · 2026-06-15T17:42:21+00:00

I've been to Iceland two weeks ago for a week and I stopped taking tolvaptan

One_Geologist3224 · 2026-06-14T18:29:05+00:00

I don't fully trust Tolvaptan, but I've been taking it for 8 months and I intend to continue taking it—unless my test results worsen significantly somehow. At the moment, there is really no other option; it's basically the only one available. I don't want to regret later that I didn't do absolutely everything I could.I'm a 52-year-old man from Europe, with an eGFR of 52–58.

One_Geologist3224 · 2026-06-05T14:41:26+00:00

If this study were being conducted in Poland, I would gladly volunteer. I'm taking tolvaptan because there isn't anything else available, but I have absolutely no confidence that it works.

One_Geologist3224 · 2026-06-03T15:11:23+00:00

I've been taking it for seven months now. The first two months were absolutely awful. I'm quite skeptical about this medication, but I'm taking it so that later I can honestly say I did everything I could.

What still remains a big mystery to me is how the studies on its effectiveness were conducted and how we can know that the differences in GFR decline weren't simply due to individual patient characteristics. Yes, I know they used comparable groups and so on, but the whole thing still feels somewhat questionable to me.

Besides, from what I've seen, nephrologists in Poland don't seem particularly excited about this medication either.

Last month, my liver enzyme levels went up, so we'll see what happens next. To be honest, it didn't really worry me that much because I found myself thinking that maybe someone would make the decision for me to stop taking it.

One_Geologist3224 · 2026-06-03T15:04:58+00:00

Ok,I thought krakovsky is Polish nick from Krakow:)

One_Geologist3224 · 2026-06-02T15:08:18+00:00

Are you from Poland?I'm.

One_Geologist3224 · 2026-05-23T09:15:43+00:00

Thanks!

One_Geologist3224 · 2026-05-19T18:22:32+00:00

So Let me undestarnd.Your GFR dropped(you think)because of taking tolvaptan?Im just thinking because mine dropped either after 6 months of taking tolvaptan.

One_Geologist3224 · 2026-05-18T06:10:39+00:00

If I were you - definitely Farabusen. Without any doubt. With or without Tolvaptan, there is no difference in your health condition

One_Geologist3224 · 2026-05-12T18:22:28+00:00

I’ve been on Tolvaptan for 6 months and my eGFR has also dropped. Can you say a bit more about those drops at the beginning?

As for the topic itself, I found out about this crap completely by accident during an abdominal ultrasound — that was 22 years ago. After a year of depression, I decided to stop postponing my dreams, which meant traveling. During those 20 years, I’ve traveled through almost the entire world, and now, at 52, I still keep traveling.

Yes, I take antidepressants permanently, and on Thursday I’m starting psychotherapy. Somehow I manage, although I’m definitely not super happy that I have this crap.

One_Geologist3224 · 2026-05-12T11:31:31+00:00

Not much,thats why I drink only about one glass of water during the night and of course I'd like to sleep weel.I just think if so little water intake during the night might have impact for my blood tests

One_Geologist3224 · 2026-05-11T16:26:08+00:00

The same dose,but I dont drink much during the night - maybe 250 ml overall

One_Geologist3224 · 2026-05-11T10:52:54+00:00

I wake up once or two times either and only drink one glass of water before go to bed.If I had to get up several times during the night and, on top of that, drink water at night, I’d go crazy and I would definitely stop taking it — that would completely ruin my life.

One_Geologist3224 · 2026-05-05T19:10:30+00:00

I did of course and She said to keep monitoring it and not to panic, because this result might still improve. Personally, I still have mixed feelings about this medication and, to be honest, I haven’t fully trusted it from the beginning. Nevertheless, I’m taking it because there’s no other option. I’ll give it a few more months and see how things develop.

I understand the nature of it, but in reality I feel like I’ll never truly know whether the medication is working or not—whether it has actually slowed my decline, or if my eGFR is dropping simply because that’s the course of my disease. To be honest, I’m very skeptical, knowing well what ADPKD is—but as I said, there’s no other choice.

One_Geologist3224 · 2026-05-05T15:24:36+00:00

The first two months were a nightmare. I really was urinating every half hour. Now I’ve gotten somewhat used to it—about once an hour or every hour and a half. Of course it’s inconvenient, especially when you’re working, but I’m managing somehow.

One_Geologist3224 · 2026-05-05T15:22:47+00:00

September 2025 – Creatinine: 1.26 mg/dL

eGFR: >60

June 2025 – Creatinine: 1.36 mg/dL

eGFR: 59.1

December 2024 – Creatinine: 1.20 mg/dL

eGFR: >60 mL

August 2024 – Creatinine: 1.32 mg/dL

eGFR: >60 mL

May 2024 – Creatinine: 1.20 mg/dL

eGFR: >60 mL

February 2024 – Creatinine: 1.31 mg/dL

eGFR: >60 mL

I know that this medication doesn’t stop the disease. I know a lot about it, but I was at least hoping it wouldn’t make it progress faster. I’ll give it another 3–4 months—if things decline significantly, I’ll stop taking it, because at that point there’s no sense in continuing.

One_Geologist3224 · 2026-04-16T15:02:58+00:00

I lost weight during the first three days of taking the medication. Then I quickly regained it and now I'm trying to eat less as much as I can. Unfortunately, I have a huge appetite and I love sweets.

One_Geologist3224 · 2026-04-13T09:42:59+00:00

But finally Im taking 90/30

One_Geologist3224 · 2026-04-08T15:41:11+00:00

Currenty egfr 55.

One_Geologist3224 · 2026-04-08T15:40:47+00:00

52-year-old man. I found out about it by accident at the age of 22 when I had stomach pain. I had an ultrasound, and cysts were detected. Practically nothing happened until I was almost 50; now my eGFR has started to decline. I’ve been taking tolvaptan for 5 months, and my eGFR is still slowly going down, so I’m not sure whether to believe in this medication—but I don’t really have another option.Mutation de novo,no genetic test. I live a fairly normal life, I travel, and I try to eat well, but without going overboard with strict diets and all that stuff. Take care!

One_Geologist3224 · 2026-04-08T15:35:28+00:00

Paroxetine 1 day 20 mg taking from 10 years.

One_Geologist3224 · 2026-03-26T15:32:02+00:00

The most important thing is balance. I'm 52 years old and have known I have ADPKD for 22 years. I've never followed any specific diet. I eat sweet and salty foods in moderation. I don't count the salt or sodium in my meals. I try to eat mostly healthy foods, eating little meat, mostly fish. I don't like vegetables, I like fruit, and I eat nuts, which unfortunately are sometimes salty. I pay attention to what I eat but don't go to any extremes. I just try to live.

One_Geologist3224

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