#Jynarque - Twitter Hashtag

We are recruiting patients with #ADPKD on tolvaptan! If you are a patient or care for patients with ADPKD on #Jynarque, please let us know if you are interested in being enrolled in #Serendipity-pb1 trial https://t.co/Vfcp0GnHm2

2

16

3

1

2K

Varro Analytics

@Varro_Analytics

over 5 years ago

Anyone know how drawbacks for these drugs are perceived by docs/pts/payers? Messy AE's (Black Box + REMS), yet still big revenue •$1.9B - #Tysabri (🧠infection + infusion) •$731M - #Jynarque (liver tox) •$452M - #Opsumit (embryo tox) •$379M- #Blincyto (neuro tox + infusion)

Varro_Analytics's tweet photo. Anyone know how drawbacks for these drugs are perceived by docs/pts/payers?

Messy AE's (Black Box + REMS), yet still big revenue

•$1.9B - #Tysabri (🧠infection + infusion)
•$731M - #Jynarque (liver tox)
•$452M - #Opsumit (embryo tox)
•$379M- #Blincyto (neuro tox + infusion) https://t.co/r6e1puz8Ks

2

4

0

Kevin J. Fowler Principal The Voice of the Patient

@gratefull080504

over 6 years ago

If you are currently on #jynarque #tolvaptan and have lost your job or health insurance due to #COVID19 @OtsukaUS is ensuring you have access to your #adpkd #pkd medication at no cost to you cc @PKDFoundation @PKD_Int @ADPKDdatabase

0

4

2

0

Heather O. @HeatherOman1

almost 7 years ago

My eye doctor thinks all my issues last summer were caused by my kidney med and I went off it for a week or so and slept super awesome and now I’m back on it and it’s 2:30am and here we are. So basically it’s the worst medication ever. #jynarque #pkdproblems

1

3

0

Heather O. @HeatherOman1

over 7 years ago

This is my new Bubba. It holds 52 oz of liquid. 52 OUNCES!! It might last me the entire night without having to refill it.⁦@nate_oman⁩ bought it for me. People, this is true love. #pkdproblems #tolvapton #jynarque

HeatherOman1's tweet photo. This is my new Bubba. It holds 52 oz of liquid. 52 OUNCES!! It might last me the entire night without having to refill it.⁦@nate_oman⁩ bought it for me. People, this is true love. #pkdproblems #tolvapton #jynarque https://t.co/JbXlcZak9U

1

4

0

Heather O. @HeatherOman1

over 7 years ago

In the spirit of #grateful, one upside to #jynarque and the constant need to stay well hydrated is that I am pooping like a rock star. (TMI? Sorry. When you have a chronic condition, all bodily functions are carefully monitored and considered. Poop is important.💩)

0

1

0

Heather O. @HeatherOman1

over 7 years ago

Oh another one: bubba insulated tumblers. Convenient for keeping drinks cold while working at a hot barn, essential now that I am on #jynarque, aka the PKD drug from hell.

1

0

Heather O. @HeatherOman1

over 7 years ago

When your medication makes you so thirsty you spend 15 minutes doing nothing but fantasizing about different things you can drink. #pkdproblems #jynarque #tolvapton #iamsothirstyallthetimenow

0

2

0

jesse @JesseMLee

over 7 years ago

JYNARQUE Tolvaptan Review! Living with PKD https://t.co/yjsS4q4Aga via @YouTube #jynarque #PKD #ADPKD

0

2

1

0

TheMelissaFarley @TheMelFarley

over 7 years ago · Chandler

UPDATE: Labs came back normal for first month of #Jynarque and moving to monthly blood tests (Thank goodness). Also found that it helps to keep water in the car, a case at my desk at work and a coffee can in the trunk just in case of “emergencies.” #ADPKD

2

3

0

jesse @JesseMLee

almost 8 years ago

@TheMelFarley saw your tweets on #jynarque . I also started a few weeks ago and felt good to find someone else going thru the same. The thirst is real! Will follow you on the journey!

1

2

0

TheMelissaFarley @TheMelFarley

almost 8 years ago · Chandler

Officially started the new drug #Jynarque for #polycystickidneydisease and plan to chronicle my health journey to help others be informed. Here’s my day 1 experience. (BTW, I don’t necessarily plan on daily posts, but all significant observations, labs, check-ins, etc. #ADPKD

5

2

0

Fouad Chebib, MD, FASN

@fouadchebib

about 8 years ago

#MayoClinic #PKD center has been instrumental in bringing the first treatment to patients with #ADPKD I am privileged to take care of such engaged and dedicated group of patients #newhope #tolvaptan #JYNARQUE https://t.co/tLgxCtQmUq

0

9

0

PANTHERx Rare Pharmacy @PANTHERxRare

about 8 years ago

PANTHERx® Specialty Pharmacy announces partnership with The Health Plan as a provider of specialty medications. PANTHERx® will also be the exclusive provider of recently FDA-approved #CRYSVITA® injection & #JYNARQUE™. @TheHealthPlanHQ Read more at: https://t.co/gnHL1fJCfN

PANTHERxRare's tweet photo. PANTHERx® Specialty Pharmacy announces partnership with The Health Plan as a provider of specialty medications. PANTHERx® will also be the exclusive provider of recently FDA-approved #CRYSVITA® injection & #JYNARQUE™. @TheHealthPlanHQ Read more at: https://t.co/gnHL1fJCfN https://t.co/v9ZqnNB9dV

0

3

1

0

Kevin J. Fowler Principal The Voice of the Patient

@gratefull080504

about 8 years ago

After leaving the @PKDFoundation And learning about multiple #adpkd #clinicaltrials and the approval of #jynarque The future looks so much brighter than when I was initially diagnosed with #pkd in 2001 #nephJC #nsmc

0

5

0

James Pritsiolas, MD, FASN @Nephro_Doc

over 8 years ago

Curious whether the number of prescriptions for #Jynarque (#Tolvaptan) for #ADPKD will vary depending on where a prescriber lies on the political spectrum. #Nephrology

1

2

1

0

James Novak, MD PhD FACP FASN FNKF @JamesNovakNeph

over 8 years ago

I’m seriously contemplating #Jynarque (#tolvaptan) for a patient with #ADPKD, but covered co-pay in donut hole is $1,382 for 14 tablets. Now we need pre-authorization, REMS, and co-pay assistance programs. Any more obstacles?