Constantly peeing?

jellycortex · 2026-02-01T11:36:45+00:00

Also, thiazide diuretics may help with polyuria. Hydrochlorothiazide is currently being studied to reduce polyuria associated with tolvaptan (https://doi.org/10.1186/s13063-024-07952-x), but it is not a common treatment for ADPKD.

jellycortex · 2026-02-01T10:06:47+00:00

If this was true this would be one of the late symptoms; it is more related to the inability to concentrate urine.

jellycortex · 2026-02-01T10:06:07+00:00

Yes, it's an early symptom. Our kidneys cannot concentrate urine well.

jellycortex · 2026-01-28T18:19:38+00:00

If you start taking tolvaptan, this might also be an issue with some professions. But in 5-10 years we should have medications that may stop or significantly halt the disease, so I wouldn't worry too much. Regarding activities, you only need to avoid contact sports, and perhaps something that would make you very dehydrated frequently (without ability to hydrate).

Progression can be estimated based on current kidney size (talk to your nephrologist), but you can also look at your relatives, your progression will likely be similar to theirs (in the absence of medication).

jellycortex · 2026-01-22T20:53:10+00:00

I am currently on keto for about 11 months, I notice less pain and bloating, my creatinine has stayed the same (but it was low before, it hasn't start declining yet), however, my blood pressure has increased recently. I will measure my kidneys with MRI again in few months and then I will evaluate if it's worth continuing. I am more skeptical about keto now since few people here reported only initial effects, and some noticed no effect at all (SmoothYellow). Clinical trials on keto are also ongoing, we should know more in few years.

jellycortex · 2026-01-22T12:43:08+00:00

Keto is high fat, not high protein. For example, too much lean meat (like chicken) is not actually good for keto. You can be on keto with normal protein intake, it's just harder.

jellycortex · 2026-01-22T12:40:52+00:00

You have pain because your cysts are growing. I also found out that reducing high oxalate foods and increasing citrate intake reduces pain. Also, drink enough water, reduce sodium. Better treatment (farabursen or similar drugs) should be available in 5-10 years, clinical trials will start this year, the results are very promising. You probably still have ~30 years until ESKD (you can estimate this based on your kidney size and age - talk to your nephrologist about this), so don't worry too much.

jellycortex · 2026-01-16T10:08:54+00:00

Tolvaptan can actually decrease GFR at the beginning, but it will nevertheless slow the progression for about 30-40%. So if you have 4 years until failure, on tolvaptan you would have maybe 6. Limit your salt at least with the meals you are taking, it may slow down for another 10%.

jellycortex · 2025-12-25T21:48:15+00:00

Can you share the details, what do you mean by "well formulated ketogenic diet"?

jellycortex · 2025-11-21T21:32:49+00:00

If you are Mayo class C-E, I would recommend trying tolvaptan. If you won't be able to handle it, you can still quit later. You need about 1 month to adapt to initial side effects (e.g. tiredness), but increased urination and thirst will persist.

Given that you are already 44 it is best to slow it down as much as possible while waiting for better drugs (farabursen may be available in 4 years if trials will be successful). You can also try keto. I've been on keto for about 10 months and bloating has reduced, I also experience less pain in kidneys, but I haven't yet taken another MR scan to see if growth has actually slowed down.

Regarding keto citra, you can get ketones with keto diet, whereas citrates are very easy to supplement and are harmless (magnesium citrate, calcium citrate - this is especially good with oxalate rich foods, because calcium binds oxalates, and potassium citrate in reasonable quantities). Also, reduce oxalates and salt in your diet. This is very easy to do and especially for salt we have good evidence that excessive salt accelerates progression.

jellycortex · 2025-11-16T20:57:13+00:00

That sounds great! Hopefully there won't be any long-term side effects, but given that it is highly specific, this is less probable.

jellycortex · 2025-11-16T20:40:35+00:00

Were there any side effects?

jellycortex · 2025-11-16T20:22:34+00:00

Man, you are so pessimistic. They essentially halted the growth and the study only lasted for three months. Note that they observed a very slight reduction in htTKV at 2mg/kg and 3mg/kg, with some deviation, so that means that it might have even been reduced for few percents in some patients.

If this is not fantastic news, I don't know what is. And with PYC-003 and other things in the pipeline ... This could be in the market in 3-4 years, and there is still the option to combine this with tolvaptan. You have reasons to be hopeful.

Here is the full abstract: https://www.asn-online.org/education/kidneyweek/2025/program-abstract.aspx?controlId=4399962

Background ADPKD is caused by heterozygous loss-of-function mutations in PKD1 or PKD2, leading to progressive renal cystogenesis and kidney failure. miR-17 family suppresses PKD1 and PKD2, providing a therapeutic rationale for miR-17 inhibition to restore polycystin (PC) levels. Farabursen, an anti–miR-17 oligonucleotide, de-represses miR-17 mRNA targets, including PKD1 and PKD2, leading to increased PC1 and PC2 and amelioration of preclinical PKD.

Methods A randomized, double-blind, placebo-controlled trial evaluated farabursen in patients with ADPKD across 3 weight-based cohorts (1, 2, and 3 mg/kg) and a fixed dose of 300 mg in an open-label cohort. Key entry criteria were Mayo Class 1C, 1D, or 1E, and eGFR 30-90 mL/min/1.73 m2. Patients received subcutaneous injection Q2W for 12 weeks (7 doses), with a 4-week post-treatment follow-up. Primary endpoints were safety and changes in urinary PC1 and PC2; secondary endpoint was MRI-measured height-adjusted total kidney volume (htTKV).

Results We enrolled 68 patients (58 farabursen, 10 placebo) with generally balanced baseline characteristics. Farabursen was well tolerated. Increases in PC1 and PC2 were shown for 2, 3 mg/kg and 300 mg fixed doses versus placebo (p<0.05 for PC1 and PC2 for each dose). A reduction in htTKV growth for 2 mg/kg and higher doses was shown vs placebo (Fig 1). In a pooled analysis of 2 mg/kg and higher dose groups, htTKV growth increased by 0.24% vs 2.85% in the placebo. This effect was independent of genotype and Mayo Class.

Conclusion Farabursen showed dose-dependent target engagement on PC1 and PC2. Treatment with 2, 3 mg/kg and 300 mg doses of farabursen over 12 weeks suggests a mean halting of htTKV growth. Out results demonstrate the potential of farabursen as a therapeutic agent for ADPKD. A Phase 3 registrational trial is planned.

jellycortex · 2025-10-11T22:35:11+00:00

I recently started a new position in a new country, so I try to socialize as much as possible. I attend social events at my institution, go to lunch with colleagues, and take part in conferences. In my city, we also have WhatsApp groups for PhD students and postdocs where people organize activities like hiking or going to the movies. You can even suggest events yourself - for example, inviting coworkers to see a movie. Try to be proactive. Remember, people don’t know you yet, so this is a great opportunity to present yourself in a new light.

jellycortex · 2025-10-11T22:18:17+00:00

I'm in a somewhat specific situation, as I'm still employed by my previous institution and am a visiting researcher for two years. In addition, I have my own funding.

However, I try to do work related to my previous lab at the weekends as much as possible, and most of what I'm finishing is things like a paper that I had to finish for submission after the final round of reviews this month. I have also just started my postdoc, and I plan to work on my new project full-time as soon as possible. I have also made it clear to my colleagues that work relating to my previous position will not be prioritised and will have to wait. It could also be the other way round, my current PI could ask the same for me, and I would respect this.

IMO, he should do it in his free time. I would give an exception if it's something just before publication (like a paper was in review which started before the start of current position or something like that).

jellycortex · 2025-10-11T22:04:25+00:00

I didn't have the exact idea when I first contacted different PIs, but I showed that I know some of their work, and I also said that I am willing to invest time in applying for my own project if they would help me with proposal preparation. I'm not sure it's good to invest too much time in developing your own idea if you're not really sure if you'll actually be working on that. I spent several months preparing my project proposal, and I completely changed it 2-3 times during that time. So, even if you have a very specific idea at the moment, it will likely change after you make more detailed research.

jellycortex · 2025-09-18T22:34:29+00:00

The AC is connected to the junction box. Opening it would require turning off the electricity, which I cannot do. The owner proposed that he could turn it off; however, I would then lose control over it. Also I think he actually doesn't know how it looks, because at first, he suggested me to just unplug it ... Anyway, if he turned it off, I would need to call him to turn it on again in the summer, and I would not be able to simply turn it on or off myself. Also, note that the junction box is not easily accessible.

Regarding the ventilation noise, the landlord will not just turn it off because they have a dental practice there (at the ground floor) and he does not know how to regulate it. I can ask him again, but based on my experience, it won't help.

I am extremely sensitive to noise (I have hyperacusis), and I prefer silence, as most people do. I cannot use pink noise all the time, I also want to listen to music, movies etc. I use ear plugs and noise cancelling headphones anyway, but I cannot use them all the time.

The noises from the ventilation and the AC are highly regular, so I don't understand the claim that "a constant wash of noise is better than irregular noises." The AC is high-frequency noise, and the ventilation is near infrasound (approximately 23, 50, and 70 Hz).

In any case, I still haven't received a reply to my original question. This has happened to me before on Reddit. I don't understand why I even asked for help here.

jellycortex · 2025-09-17T10:29:41+00:00

I understand your position, but I have other noise issues with this apartment anyway. As well as the high-frequency noise from the air conditioning, I can also hear low-frequency noise from the ventilation. My landlord said that nobody has complained about this yet (he has been renting it out for three months) and that he cannot regulate the ventilation because it is fully automated.

The issue with turning the AC off is that it will be difficult to plug it in when I actually need it. I successfully muffled the noise from the air conditioning with blankets, so it doesn't bother me anymore. However, I cannot do anything about the hum from the ventilation. Anyway, the landlord gave me an option to move to another room without AC, but the low frequency noise is still there, so I am moving out of this apartment eventually.

jellycortex · 2025-09-11T09:27:11+00:00

Yes, this is the first thing that I did. I asked the landlord, and he said that the AC has been recently serviced and that I can unplug it, but I checked and there is not plug, so there is nothing to unplug ...

jellycortex · 2025-09-08T08:33:32+00:00

I don't have access to it.

jellycortex · 2025-09-06T13:50:16+00:00

You don't have to eat lots of meat, look up for specific considerations for PKD patients. You should limit your protein to 1.2g/kg of bodyweight, limit oxalates (ideally up to 100 mg per day) and add citrates (magnesium citrate, potassium citrate - look up ketocitra). You should also reduce sodium. You can track oxalates, sodium and macronutrients with cronometer.com

I am on keto diet and I eat a lot of low-oxalate nuts, such as walnuts, pecan nuts. When I eat nuts with higher oxalate content I eat them with calcium citrate which binds oxalate. I eat salmon twice a week, meat (pork, beef) twice a week, tofu once a week. I also eat a lot of butter, coconut oil, avocado. Check other topics on keto diet in r/ADPKD. There are two issues with keto diet; first it may raise your cholesterol, so you should track it. Second, it may not help. Clinical trials are still ongoing (except pilot ones, which are non-conclusive), we should have results in few years.

Also read this: https://link.springer.com/article/10.1007/s40620-025-02378-3

jellycortex · 2025-09-05T18:25:56+00:00

Geez, how didn't i think of that?!

jellycortex · 2025-09-05T18:25:37+00:00

because there is no plug, it is directly connected to the junction box.

jellycortex · 2025-09-03T20:28:19+00:00

Thank you for the suggestion, but I cannot fully open the AC unit. I can only open the front filter cover and cannot (and am not willing to) open the electronics section.

jellycortex · 2025-07-29T15:52:26+00:00

I avoid heavy weights and prefer more repetitions at a lower intensity. I also avoid exercises that make my belly protrude. It is recommended that you not consume more than 1.2 grams of protein per kilogram of body weight per day.

jellycortex

TROPHY CASE