Experiences with

Tolvaptan

Update : I started Tolvaptan and sodium going up, Dr confirmed Xtandi did not cause lower sodium.

Update : I started Tolvaptan and sodium going up, Dr confirmed Xtandi did not cause lower sodium.

It’s just that I have read that when taking Tolvaptan one should drink at least 3 l of water a day incl. 0.5 l before going to bed. Thank you

Hello all, I've started taking Tolvaptan (45/15) and I'm experiencing extreme muscle fatigue and brain fog. Does anyone else experience this? Any recommendations on how to deal with this?

What volume shows the severe effects of pkdI was on tolvaptan for last 4 years and it does not seem to help much, but my doctor wanted to continue tolvaptan for another year

Please write how your blood creatinine increased after starting Tolvaptan treatment? I have been taking tolvaptan for less than two months. when I started my creatinine was 1.7 mg / dl and now it is 1.94 mg / dl.

Just wondering if Tolvaptan is provided by the NHS. Thank you.

I’m utterly terrified and fear I may be put on Tolvaptan Any comments of other people experience on this medication or advice would be very much appreciated. I understand there is huge quantities of consumption of water involved!! Thanks Andrea Beesley

Hi My nephrologist is consider starting me on Tolvaptan. Has anyone heard of the the medication damaging the liver as I also have PLD as a lot of PKD patients sometimes have. Dont really want to start on this as my GFR is 52... I’m working hard on getting it higher in 2020.

I saw my Nephrologist end of last month, we discussed me taking the meds Tolvaptan because I have bad bouts of me so tired I could hardly do anything. I am waiting to hear what my function is the last check I had just entered stage 3.

In February on 2016 I had an abdominal ultrasound and the report reads in part: "no obvious solid or cystic lesions of the kidneys are noted" In 2018 I am told I am loaded with cysts and may need to try this new medicine....Tolvaptan.

Has anyone been prescribed Tolvaptan to delay dialysis? It was just approved last week in the US for PKD. Was wondering how you feel on it or about it. In the US it's called Jynarque. Any feedback appreciated

More here: https://www.businesswire.com/news/home/20180424006422/en/Otsuka%E2%80%99s-JYNARQUE%E2%84%A2-tolvaptan-Approved-U.S.-FDA-Treatment

"Tolvaptan slows cyst growth in ADPKD patients by preventing a hormone called vasopressin from binding to its receptor on renal tubule cells.

Right told today i need to get started on Tolvaptan. Got the script and now have the drugs. I was told to start it this weekend so i can gt use to the side effects prior to going back to work on Monday. If im honest im scared.

I have a quick question directed at any of those of you who are now on Tolvaptan. My 13 year old PKD daughter has been selected for the new paediatric clinical trial for Tolvaptan. I've done a bit of research up myself and it seems the only side effects so far are thirst and increased need to wee.

Hi, Just been to see my specialist and as my kidney has started to decline have decided to give Tolvaptan a go. Does anyone know if one needs to pay for the prescription or if the NHS funds it? I work so no exemption from other prescriptions such as blood pressure meds. Thanks a lot.

Just been to see my renal specialist yesterday who is amazing, and she is suggesting that would be a good candidate for Tolvaptan, I'm a 47 year old female with extremely large kidneys & GFR of 42 with many other complications.

Primitive antibiotic Demeclocycline (Ledermycin) not produced in most of the countries now, except in India and few others, has that effect but I don't know how to get it or new drug for this - Tolvaptan but this one is extremely expensive. This is last thing I can try but who knows will they work.

http://www.healio.com/hepatology/cirrhosis-liver-failure/news/online/%7B2d471f89-06c7-4acf-9823-f2aee71f3719%7D/midodrinetolvaptan-combo-improves-ascites-control-in-cirrhosis?utm_source=maestro&utm_medium=email&utm_campaign=hepatology%20news