How to be a Patient Peer: Providing Resources for People with ADPKD

Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

An Early Diagnosis

Real patient who was compensated for her time sharing her story with Otsuka

Cari is living with rapidly progressing autosomal dominant polycystic kidney disease, or ADPKD,
and taking JYNARQUE® (tolvaptan). Please remember that none of the information discussed in this article should replace the conversations with your healthcare provider. Cari is sharing her own thoughts and experiences, so please keep that in mind as your thoughts and experiences may be different. Talk to your doctor to see if JYNARQUE is right for you.

JYNARQUE is a prescription medicine used to slow kidney function decline in adults who are at risk for rapidly progressing autosomal dominant polycystic kidney disease (ADPKD). It is not known if JYNARQUE is safe and effective in children.

Please read FULL PRESCRIBING INFORMATION, including BOXED WARNING, and MEDICATION GUIDE. Please read the Important Safety Information at the end of this article.

As kids, we all want our lives to matter, to mean something to someone, to be a part of something bigger than ourselves. We want to be heroes.

But my life had a different plan. When I was 10 years old, diagnostic imaging confirmed my parents’ greatest fear: that I had inherited ADPKD from my father.

For my entire life, I’d watched my dad struggle. And I was terrified.

But despite my fears, I ended up living relatively symptom-free until my first pregnancy in 1999. My doctor told me that ADPKD could cause a complicated pregnancy and ramped up diagnostic imaging as a result.

Soon after, I first saw the cysts on my kidneys.

After that, I began managing the disease on my own for several years through blood pressure screenings and healthy living. I tried not to panic, and I remembered that my parents were both fantastic examples of being your own best advocate, so I followed their ways. I always play a role in my health, whether it’s in the form of asking questions, participating, or simply being proactive about healthy living.

That’s one way anyone can be heroic: by speaking up for themselves or their families and taking charge of their care. When it comes to advocating for myself, I take every opportunity.

And, if possible, I try to help others along the way. So I’m honored to have the opportunity to share my story as part of a supportive community of patients sponsored by Otsuka Pharmaceuticals. I’m committed to connecting with people living with ADPKD and helping them on their journeys to try to slow its progression—and Otsuka programs can help me do just that. The power of stories is undeniable, and sharing mine might help make a difference in the lives of other ADPKD patients.

Making a Commitment

Even after my pregnancies, disease management was never far from my mind. As I got closer to the age my father was when he reached end-stage renal disease, I knew it was time to start seeing a nephrologist. A few years later, I felt like I’d made a breakthrough while searching for alternative ways to slow the progression of my ADPKD, and soon, I joined a clinical trial.

It was a big commitment, but one I will never regret making. The trial required frequent four-hour round-trip drives, but for me, it was completely worth it. And in 2018, when the FDA approved the medication, it was commercially sold as JYNARQUE (tolvaptan)—the first treatment in the United States for adults at risk of rapidly progressing ADPKD.

Being on any medication long term can be scary, but I’m grateful that the Otsuka Patient Support Program can help me navigate the complexities associated with the required JYNARQUE REMS Program to monitor my liver function. JYNARQUE can cause serious and potentially fatal liver problems, so I adhere to the scheduled checkups to test my liver enzymes and make sure my liver is working properly. I also drink a lot of water and have to urinate frequently now that I am on JYNARQUE.

I am committed to treatment and doing what I can to slow the progression of my rapidly progressing ADPKD, and I am thankful for the hope and support Otsuka and the amazing ADPKD patient community have given me.

We all want to be a hero in some way. I don’t necessarily consider myself a hero, but I now know what my superpower would be if I was one: that even when I must endure hard times, all the better that I can still use them to make a difference in even one life through spreading awareness about ADPKD.

That’s something that I think Otsuka has been focusing on—the fact that we all matter. They’ve given us—patient advocates—a platform to make a difference for other people living with ADPKD.

I appreciate that they’ve started using their website to highlight a new generation of ADPKD patients—we call ourselves Generation J—and share our experiences about slowing the progression of rapidly progressing ADPKD with JYNARQUE. They’ve been consistently patient-centric with their programs and resources, and I think JYNARQUE.com reflects that.

Sharing my story was never something I expected to do. I never thought I’d have the chance or the opportunity to make a difference. So sharing it with the entire country? It’s an exceptional position to be in. Knowing that the voices of Generation J patients will be heard by others on their own ADPKD journeys gives me an amazing feeling—one I can’t really describe.

Otsuka’s commitment to us and to help slow the progression of ADPKD is what makes them special to me. They aren’t just interested in supporting us physically—they also make efforts to try to support us mentally by giving us a platform to share all of the emotions that can come from an ADPKD diagnosis. And because of that, I believe that Generation J can and will make a positive impact on our patient community.

Not only is my story easy to find on the new site, but it’s also easier to find helpful resources about slowing the progression of ADPKD. For me, that’s key—knowledge is an important part of becoming a good self-advocate and should be as accessible as possible.

My wish is that through hearing patient stories and learning about slowing the progression of ADPKD on JYNARQUE.com, others might take an active role in their health journey through early detection of ADPKD and making healthy choices.

Remember: if you, too, have to face ADPKD, face it with a fierce strength and faith.

You can learn more about Cari’s story on the JYNARQUE website by visiting ADPKDPeerConversations.com.

IMPORTANT SAFETY INFORMATION and INDICATION for JYNARQUE® (tolvaptan)

Serious liver problems. JYNARQUE can cause serious liver problems that can lead to the need for a liver transplant or can lead to death. Stop taking JYNARQUE and call your healthcare provider right away if you get any of the following symptoms:
– feeling tired
– loss of appetite
– nausea
– right upper stomach (abdomen) pain or tenderness
– vomiting
– fever
– rash
– itching
– yellowing of the skin and white part of the eye (jaundice)
– dark urine

It is important that you have a blood test before you start JYNARQUE to help reduce your risk of liver problems. Your healthcare provider will do a blood test to check your liver:

• before you start taking JYNARQUE
• at 2 weeks and 4 weeks after you start treatment with JYNARQUE
• then monthly for 18 months during treatment with JYNARQUE
• and every 3 months from then on

Because of the risk of serious liver problems, JYNARQUE is only available through a restricted distribution program called the JYNARQUE Risk Evaluation and Mitigation Strategy (REMS) Program.

Do not take JYNARQUE if you:

• have a history of liver problems or have signs or symptoms of liver problems, excluding polycystic liver disease
• cannot feel if you are thirsty or cannot replace fluids by drinking
• have been told that the amount of sodium (salt) in your blood is too high or too low
• are dehydrated
• are allergic to tolvaptan or any of the ingredients in JYNARQUE
• are unable to urinate

Tell your healthcare provider about all your medical conditions, including if you:

• have a history of sodium (salt) levels that are too low
• are pregnant or plan to become pregnant. It is not known if tolvaptan will harm your unborn baby. Tell your healthcare provider if you become pregnant or think that you may be pregnant
• are breastfeeding or plan to breastfeed. It is not known if tolvaptan passes into your breast milk. Do not breastfeed during your treatment with JYNARQUE. Talk to your healthcare provider about the best way to feed your baby during this time

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

• Taking JYNARQUE with certain medicines could cause you to have too much tolvaptan in your blood. JYNARQUE should not be taken with certain medications. Your healthcare provider can tell you if it is safe to take JYNARQUE with other medicines

• Do not start taking a new medicine without talking to your healthcare provider

JYNARQUE may cause serious side effects, including:

Too much sodium in your blood (hypernatremia) and loss of too much body fluid (dehydration). In some cases, dehydration can lead to extreme loss of body fluid called hypovolemia. You should drink water when you are thirsty and throughout the day and night. Stop taking JYNARQUE and call your healthcare provider if you cannot drink enough water for any reason, such as not having access to water, or vomiting or diarrhea. Tell your healthcare provider if you get any of the following symptoms:
– dizziness
– fainting
– weight loss
– a change in the way your heart beats
– feeling confused or weak

What should you avoid while taking JYNARQUE?

Do not drink grapefruit juice during treatment with JYNARQUE. This could cause you to have too much tolvaptan in your blood.

The most common side effects of JYNARQUE are:
• thirst and increased fluid intake
• making large amounts of urine, urinating often, and urinating at night

These are not all the possible side effects of JYNARQUE. Talk to your healthcare provider about any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist.

If you have any questions about your health or medicines, talk to your healthcare professional.

To report SUSPECTED ADVERSE REACTIONS, contact Otsuka America Pharmaceutical, Inc. at 1-800-438-9927 or FDA at 1-800-FDA-1088 (www.fda.gov/medwatch).

INDICATION:

What is JYNARQUE?

JYNARQUE is a prescription medicine used to slow kidney function decline in adults who are at risk for rapidly progressing autosomal dominant polycystic kidney disease (ADPKD). It is not known if JYNARQUE is safe and effective in children.

Please read FULL PRESCRIBING INFORMATION, including BOXED WARNING, and MEDICATION GUIDE.

Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.


©2021 Otsuka America Pharmaceutical, Inc.                                                                                    September 2021     10US21EBC0128

PW Collaborator

PW Collaborator

Our mission is to amplify the rare condition voice. One of the ways we achieve that is through collaborations across the community, from patients and caregivers to industry leaders in treatment research and development. To learn more, click here.

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