1. Why do I need to have blood tests before I start taking this medication?
3. How often do I need to follow up with my doctor while taking this medication?
4. What happens if I miss a dose of this medication?
5. Are there any dietary restrictions while taking this medication?
2. Where can I get this medication?
9. Will I have to take these medications forever?
8. Will I be able to afford this medication?
7. JAK inhibitors are still pretty new – are you sure they’re safe?
6. I read that JAK inhibitors increase the risk of blood clots. Should I be worried?
5. Can taking a JAK inhibitor cause cancer?
4. Why do I need to get certain vaccinations first?
3. Will taking a JAK inhibitor shut down my immune system?
2. If one JAK inhibitor doesn’t help me, does that mean none of them will?
1. Which JAK inhibitor is most likely to help me?
FAQs About VRAs for ADPKD, Answered
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6. Are there risks associated with this medication?
7. Will I have to take this medication forever?
5. JAK inhibitors are new. Are they safe?
8. What happens if this medication doesn’t help me?
Blood tests are used to evaluate your risk for kidney function loss over time. There are at least a couple of tests that your doctor may order, according to Hallows. These include your eGFR (estimated glomerular filtration rate), a measure of kidney function based on your blood level of creatinine. Your doctor may also order a genetic test to find out what kind of mutation is causing your ADPKD, which can help predict loss of kidney function. You’ll also need blood tests to assess liver function before starting tolvaptan, as well as while you’re taking the drug.
Rare is the child who will willingly roll up their sleeve for an injection. And chances are, you aren’t looking forward to the jab, either. While an injection takes some getting used to, many parents are reassured by the fact that the medication is safe, seems to have few side effects, and is effective, says Vij. Another bonus: The biologic doesn’t require frequent lab monitoring and blood draws — something that also requires needles — not to mention extra appointments, which can be time consuming, says Kwatra. Your doctor will give you instructions on how to administer the injection, find the proper dosage, and store the medication.
1. What if my child is afraid of needles?
You can only get tolvaptan through a pharmacy that is enrolled in an REMS program through the FDA, and most pharmacies don’t do this, Anand notes. Your doctor will let you know how you can get this drug if you decide to start it.
You aren’t the only one who balks at the idea of giving yourself an injection. Many people are so satisfied with the results, though, that the benefits outweigh the negatives, says Kwatra. Your doctor will also give you instructions on how to use the syringe or pen, as well as how to store the medication. Another benefit: Unlike other meds for atopic dermatitis, dupilumab doesn’t require blood work, which cuts down on injections aside from the biologic, he says.
1. What if I’m afraid of needles?
You’ll need to get regular liver function tests while taking tolvaptan, and you won’t be able to get a refill of your medication unless you’re up to date on these tests. You’ll be tested 2 and 4 weeks after starting tolvaptan, then every month for the first 18 months, and then every 3 months for as long as you take the drug. Your doctor may decide to reduce your dose or stop the therapy based on these results at any time, Anand notes.
According to the drug’s manufacturer, if you miss a dose of tolvaptan, you should skip that dose and take your next dose at the scheduled time.
There can be some side effects from using biologics for atopic dermatitis, but in general, there aren’t very many, says Vij. You may experience some pain or swelling around the injection site, for example. You shouldn’t use dupilumab or tralokinumab-Idrm if you are allergic to the medication or any of the ingredients in the injection. (You can ask your pharmacist for a list of what’s in the medications).
3. Are there side effects?
According to the drug’s manufacturer, you shouldn’t drink grapefruit juice while on tolvaptan, as it can increase blood levels of the drug.
List prices for biologics can run into the thousands of dollars, but many private and commercial health insurance plans cover this cost, says Kwatra. (Depending on what type of plan you have and whether you’ve met your deductible, you may have to pay a portion of the cost.) For example, many people with Medicare may pay less than $100 a month for one of these medications, and people with Medicaid may pay less than $10 a month. Even if you don’t have insurance, you may be eligible for a patient assistance program that can help you cover the costs.
4. How much does it cost?
Reduced liver function is the main risk associated with tolvaptan. This is why you’ll need to have regular liver function tests. Another potential risk is if you’re incapacitated due to an accident or another health problem and unable to drink water, you may develop a blood chemistry imbalance. “Your loved ones should know you’re on this medication and you need water, if you are not able to speak for yourself,” says Anand.
Generally, if you can tolerate tolvaptan, you’ll take the drug for years to help delay the onset of kidney failure, according to Anand. “When people are starting dialysis or need a kidney transplant, that’s when we may stop it,” she says.
It can sometimes be difficult to figure out if tolvaptan is helping preserve your kidney function, especially right away. In any case, you shouldn’t expect the drug to completely stop your loss of kidney function. “In people whose kidney function was declining fast, I’ve seen it start to decline more slowly,” says Anand. If, over time, you and your doctor truly find you are not benefiting from the tolvaptan, you’ll need to discuss whether you should continue taking it. Additionally, if you can’t tolerate tolvaptan because of reduced liver function or increased thirst and frequent urination, you and your doctor may decide that you should stop the drug.
