I am new to kidney connect and wanted to know if anyone is taking the drug Jinarc/Tolvaptan for PKD?
I am 45 years old and my eGFR is 44. In Feb. 2017 I went on the drug Jinarc/Tolvaptan (lowest dose 45 and 15) which is suppose to help slow the progression of the disease. There are many side effects, however, and I am wondering what others may be experiencing. I had a lot of the common side effects at first (ie. thirst, headache, leg cramping, etc.) but they seemed to dissipate about a month or two after...then about a month ago I started experiencing a dull chronic headache and my muscles (specifically neck) are sore and tight all the time. I am drinking approx. 4L, 250mL per day and have recently increased that a bit. I have read that muscle spasms and headaches are common side effects but I am curious if anyone else has been experiencing similar side effects after being on the drug for almost a year? I do not know anyone else who is on this medication or who has this disease. My mother, was the only person who I knew that had PKD...sadly she passed away 4 years ago.