What is ADPKD, and what is the relationship between cysts, kidney size, and kidney function in ADPKD?
Cysts are sacs filled with fluid. When cysts develop on the kidneys, those parts of the kidney are often no longer able to function properly. In addition, cysts can block the tubes inside the kidneys.
In ADPKD, cysts usually develop on both kidneys. Over time, more cysts develop, individual cysts get bigger, and some will eventually burst. This is known as “disease progression”. Disease progression can vary greatly from one person to another, even among members of the same family. Some people experience symptoms of disease progression. Even if you do not yet have symptoms, if you have ADPKD, cysts are continually forming and growing on your kidneys.
As the cysts continue to grow in number and size, the kidneys get larger and have a harder time doing their job. Eventually, they may stop working altogether.
To filter waste and water out of your blood, your kidneys use a hormone called vasopressin. Vasopressin makes the kidneys retain water.
Vasopressin levels are higher than normal in people with ADPKD. The high level of vasopressin in people with ADPKD promotes cyst growth, which increases the size of the kidneys.
JINARC works by blocking the effects of vasopressin. By blocking vasopressin, JINARC is able to reduce the growth of the cysts in the kidneys and is expected to help protect kidneys from damage and failure.
Because of the way that JINARC works, you may produce more urine causing you to urinate more frequently during the day and at night. This may become less pronounced over time, but talk to your doctor if you need help coping with this effect of the medication.
What tests do I need to undergo as part of JINARC treatment?
In rare cases, JINARC patients have experienced changes in liver function that could, if left untreated, cause liver injury. To reduce this risk, you must agree to get regular blood tests, and you must enrol in the JINARC Hepatic Safety Monitoring and Distribution (HSMD) Programme.
The HSMD Programme was designed to monitor liver function closely to ensure it is within normal limits, so that you can stay on treatment. The HSMD Programme does this by making sure that you have a blood test:
before you start JINARC
every month for the first 18 months, then
every 3 months for the next 12 months, and
every 3-6 months afterwards, as long as you stay on treatment
The HSMD Programme can remind you when it’s time for you to go for a blood test. This is important because your doctor will need to review your blood test results and provide their approval before you can receive your next refill of JINARC.
Your doctor will review all the potential risks and benefits of JINARC with you before prescribing JINARC. If you both agree that JINARC is appropriate for you, you and your doctor must sign a Patient-Prescriber Agreement Form (PPAF). Signing the PPAF means that:
you understand the potential risks, especially for the liver, and the benefits that may occur over time when receiving treatment with JINARC
you and your doctor agree that JINARC is suitable for you
you agree to take your regular blood tests
you agree to start treatment
In order to gather information on the long-term clinical outcomes with JINARC, your doctor may discuss with you the possibility to participate in the Canadian JINARC Patient Outcomes Registry.
For more information, contact Otsuka MedInfo at 1-877-341-9245.
you have been asked to permanently discontinue tolvaptan
you are allergic to tolvaptan, benzazepine or benzazepine derivatives (e.g. REMERON®), or any non-medicinal ingredients in the formulation
you cannot replace fluids by drinking or you cannot feel if you are thirsty
you have elevated sodium (salt) in your blood
you have a condition associated with a low blood volume
your liver is not functioning properly and in a way that is of concern to your doctor
you are pregnant or plan to become pregnant, or are breastfeeding
your body is not able to make any urine
you take certain medicines. Here are examples of medicines that could cause you to have too much JINARC in your blood:
Clarithromycin or telithromycin (antibiotic medicines)
Ketoconazole or itraconazole (antifungal medicines)
Ritonavir, indinavir, nelfinavir, and saquinavir (anti-HIV medicines)
Nefazodone (antidepressant medicine)
you have galactose intolerance, Lapp lactase intolerance or Glucose-galactose malabsorption (all rare hereditary diseases) because JINARC contains lactose
Can I take JINARC if I am pregnant or planning on getting pregnant?
To prevent pregnancy while on JINARC treatment, women of childbearing potential must have effective contraceptive measures in place before and during treatment.
Want this information to go?
View the Patient Information Booklet and the Consumer Information Leaflet
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How do I take JINARC?
JINARC is taken twice a day. Each JINARC pill has a different amount of medicine. The 2 pills you take each day add up to your total daily dosage.
The first dose of the day is always higher than the second dose. This was designed to give you the best balance between the amount of medicine in your body and possible increased urination at night.
Your doctor will usually prescribe one of the 3 total daily doses shown in this table. Your doctor may adjust your dose during the first weeks or months of treatment, to help find the best dose for you. Take your prescribed dose as shown.
If you are taking certain medicines, your doctor may reduce your usual dose of JINARC. Certain medicines could cause you to have too much JINARC in your blood. Your doctor may reduce your dose to the following:
15 mg AM dose + 15 mg PM dose , for a total daily dose of 30 mg
OR
30 mg AM dose + 15 mg PM dose, for a total daily dose of 45 mg
You can take JINARC with or without food.
Do not drink grapefruit juice while you are on JINARC.
To prevent losing too much body water (dehydration), have water available to drink at all times while on JINARC. Unless your healthcare provider tells you otherwise, drink plenty of water during the day, and one or two glasses before going to bed.
Certain medicines or illnesses may keep you from drinking fluids or may cause you to lose too much body fluid, such as vomiting or diarrhea. If you have these problems, call your healthcare provider right away. Except in emergency situations, do not stop taking JINARC without first talking to your doctor.
Please note that some fees may apply with the use of these apps.
Pill Reminders
Medisafe Medication Reminder and Pill Organizer
CAREZONE
MED HELPER
MYMEDREC
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What if I miss a dose?
You should not miss or skip doses of JINARC. If you do miss a dose, take your next dose at the scheduled time and prescribed level. Do not take 2 doses at the same time. If you are having a hard time remembering to take your JINARC dose, talk to your healthcare team for help incorporating JINARC into your daily schedule.
What are the possible side effects of JINARC treatment?
The expected side effects of JINARC treatment are thirst, urinating large amounts and/or frequently, and urinating at night.
Other possible side effects include headache, constipation, diarrhea, dry mouth, indigestion, decreased appetite, fatigue, weakness, dizziness, trouble sleeping, muscle spasms, rash or itching.
Talk with your doctor, nurse or pharmacist if you experience any of the following:
increased levels of potassium in the blood: Symptoms such as irregular heartbeats, muscle weakness and generally feeling unwell
increased levels of uric acid in the blood/gout: Symptoms such as joint pain, commonly in the big toe, followed by redness, swelling or warmth
liver disorder: Symptoms such as yellowing of the skin or eyes, dark urine, abdominal pain, nausea, vomiting or loss of appetite
You should also talk to your healthcare team if you experience a side effect that distresses you.
Stop taking JINARC and get immediate emergency medical help if you have any of the following:
dehydration: Symptoms such as increased thirst, dry mouth and/or skin, fatigue, decreased amount of urine, headache, dizziness or irregular heartbeats
angioedema and severe allergic reactions: Symptoms such as swelling of the face, eyes, or tongue, difficulty swallowing, wheezing, hives and generalized itching, rash, fever, abdominal cramps, chest discomfort or tightness, difficulty breathing or unconsciousness
Can I take any over-the-counter medications from the pharmacy while I am on JINARC?
Before starting any new treatment, tell your healthcare provider that you are on JINARC.
As with most medicines, interactions with other drugs are possible. Tell your doctor, nurse, or pharmacist about all the medicines you take, including drugs prescribed by other doctors, vitamins, minerals, natural supplements, or alternative medicines.
The following may interact with JINARC: clarithromycin, ketoconazole, ritonavir, saquinavir, rifampicin, phenytoin, carbamazepine, St. John’s Wort, cyclosporin, quinidine, verapamil, erythromycin, fluconazole, hypertonic saline solutions, drugs that increase serum sodium concentrations, drugs known to increase serum potassium levels (such as spironolactone), digoxin, consuming grapefruit juice, or vasopressin drugs, such as desmopressin, used to control bleeding.
You should not stop taking JINARC without talking to your doctor first. If the effects of thirst and/or urination are making it difficult for you to stay on treatment, talk to your healthcare team for help with adapting your daily routine.
I find myself using the bathroom a lot. How can I excuse myself without getting noticed?
Due to the way JINARC works, you may be experiencing thirst, urinating in large amounts and/or frequently, and urinating at night. Whether it’s meetings, movies or other social events, if you know you’re going to be occupied for a certain period of time, make sure to take a quick trip to the bathroom beforehand.
Here’s a good list of excuses to give when you need to go to the bathroom.
I think I left something in the bathroom.
I have something stuck in my teeth.
What is going on with my hair?! I better go fix that!
I need to go blow my nose.
I always brush my teeth after lunch. (Tip: Why not bring a toothbrush with you and do it for real?)
Oh! I forgot there is something I need to go do. Be right back.
I need a glass of water. Want me to get you something?
Can you excuse me for a second? I need to make a phone call.
I need to stretch my legs for a minute.
I’m not getting any cell phone reception in this spot.
Featured Apps
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Bathroom finder
Flush – Toilet Finder & Map
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How can I remember to drink more water?
The best way to remember to drink water is to have some water right next to you. Here is how you can ensure that you will always have some water handy:
Keep a pitcher of water on the table for easy access.
Freeze water in freezer-safe water bottles. Take one bottle with you for cold water on the go.
Carry a water bottle with you at work, at school or when running errands.
Eating out? Say yes when offered water or ask for water to drink with your meal.
Set up an hourly alarm to drink some water.
Consider adding lemon, lime, orange or cucumber slices to flavour your water.
What is ADPKD, and what is the relationship between cysts, kidney size, and kidney function in ADPKD?
What role does vasopressin play in ADPKD?
How does JINARC work in ADPKD?
What tests do I need to undergo as part of JINARC treatment?
What is the PPAF?
Who should not take JINARC?
Can I take JINARC if I am pregnant or planning on getting pregnant?
How do I take JINARC?
What if I miss a dose?
What are the possible side effects of JINARC treatment?
Can I take any over-the-counter medications from the pharmacy while I am on JINARC?
Is it important to take JINARC as prescribed?
I find myself using the bathroom a lot. How can I excuse myself without getting noticed?
How can I remember to drink more water?
Consult your doctor with any questions about your disease and your treatment, or to find out if the advice on this website is right for you. For more information on Pr JINARC® (tolvaptan), call toll free:
1-844-2JINARC
(1-844-254-6272)
Over time, cysts (sacs filled with fluid) develop on your kidneys and may get bigger. As cysts continue to grow in number and size, your kidneys get larger. Over time, you may experience symptoms of disease progression.
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