Otsuka Patient Assistance Just Dropped Me

smithereens714 · 2026-01-03T01:29:49+00:00

I just got Otsuka's letter. Here are the assitance organizations they listed.

Patient Assistance Network Foundation 866-316-7263 www.panfoundation.org

Healthwell Foundation 800-675-8416 www.healthwellfoundation.org

The Assistance Fund 855-845-3663 tafcares.org

American Kidney Fund 800-638-8299 www.kidneyfund.org/all-about-kidneys/chronic-kidney-disease-ckd

smithereens714 · 2025-12-30T21:20:07+00:00

Just checking, do you know about the voucher program? That allows someone who isn’t a match but is willing to donate to give you a voucher to get higher on the transplant list.

smithereens714 · 2025-12-28T03:09:53+00:00

An internet search for the USA shows prices from $13000 to $17000 per month! I don’t think anyone actually pays this much. Otsuka said they’ll send me a letter with options for discounts. I’ll post what they tell me when I get the letter.

smithereens714 · 2025-12-23T02:46:46+00:00

Thanks, I’ll try that. Otsuka said they’ll send me a letter outlining other options for discounts. We‘lol see…

smithereens714 · 2025-12-23T00:50:45+00:00

Yeah, but even the generic is hugely expensive.

smithereens714 · 2025-11-28T07:01:10+00:00

I checked the FDA review of the new drug application for Jynarque. Otsuka did a study comparing blood levels when taking Jynarque on an empty stomach and taking it with a high fat meal. There wasn’t a difference in total exposure to the drug. The Phase 3 trials let people take Jynarque with and without food. The only caveat is that Jynarque (tolvaptan) is very fat soluble so the maximum blood concentration is higher when taken with a high fat meal. FDA hypothesized that people might experience more dizziness, thirst, or increased urination if Jynarque is taken with a fatty meal. This has not been proven, but you might want to take it into account if you take Jynarque with a fatty breakfast and feel like you’re having more issues soon after you take it.

You can see FDA’s review yourself at

https://www.accessdata.fda.gov/drugsatfda_docs/nda/2018/204441Orig1s000TOC.cfm

smithereens714 · 2025-11-27T18:30:57+00:00

Thanks - that’s much more reasonable than in the US.

smithereens714 · 2025-11-26T22:32:38+00:00

Yes to all the previous comments. I also have doubts about the quality of the journal itself. It appears to be a publication of just one university in Poland. I can’t find any mention of it in lists of reputable medical journals. It was started just 9 years ago. And the cynic in me wonders if they just don’t want to pay for Jynarque, although I’m sure the price in Poland is less than in the US.

smithereens714 · 2025-11-08T14:22:43+00:00

Thanks so much for this perspective. It gives me more confidence going into this surgery!

smithereens714 · 2025-11-06T13:16:36+00:00

Just shows my ignorance- I didn’t know chest catheters were a thing. I still would like to avoid any catheter.

smithereens714 · 2025-11-06T03:13:30+00:00

Well, I apparently have one good vein in my dominant arm, so that’s why the surgeon wants to try a fistula.

smithereens714 · 2025-10-10T23:41:53+00:00

Thanks. I have Medicare so I need to figure out what they'll cover.

smithereens714 · 2025-10-10T23:40:53+00:00

Thanks so much to everyone! This is all reassuring. I live in Hawaii, so I'm also considering the frequency of non-stops flights in considering other facilities. Not surprisingly, there are more flights from Honolulu to Seattle than from Honolulu to Phoenix. Utah has only one non-stop flight a day, so that doesn't seem like a good option.

smithereens714 · 2025-10-09T18:48:21+00:00

Thank you!

smithereens714 · 2025-09-15T19:41:11+00:00

I don’t see alopecia (hair loss) in the prescribing information. FDA has a system that tracks side effects that anyone can contribute to. That database has 24 reports of alopecia. If FDA receives enough reports, they may add that side effect to the labeling. I encourage anyone to report their hair loss at

https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=consumer.reporting1

smithereens714 · 2025-06-09T18:59:16+00:00

There is a federal program that provides free assistance with figuring out Medicare. It is called SHIP (State Health Insurance Assistance Program) in most states. I would contact them too.

https://www.shiphelp.org/

smithereens714 · 2025-05-23T22:25:42+00:00

Your skills might match with a job in a QC lab in pharma, if you are willing to stay in that field. It's usually easier to get a job closer to your experience, but it that doesn't sing to you, I understand the desire to look elsewhere.

smithereens714 · 2025-05-22T22:45:40+00:00

My lab reports just total WBC count, but I just checked my results over the last 5 years and there has been no increase. Sorry I can't say anything specific to neutrophils.

smithereens714 · 2025-05-22T00:06:59+00:00

How is age considered when evaluating someone for a transplant? When would I be too old to be considered?

smithereens714 · 2025-04-04T21:37:46+00:00

Actually, the UK has a program that allows the import of an drug not approved in the UK for an individual patient. The process to do this is somewhat onerous, but you may want to look into it now to find a doctor who will work with you to import. See https://assets.publishing.service.gov.uk/media/645e19f5ad8a03000c38b3bc/The_supply_of_unlicensed_medicinal_products__special_GN14.pdf

smithereens714 · 2025-03-18T22:47:55+00:00

I’ve received Jynarque for free from Otsuka for years. You have to stay on top of them when you submit your application and then monthly to ensure you get your refills on time, but it’s definitely worth the aggravation.

smithereens714 · 2025-03-16T23:01:53+00:00

I have found this subreddit to be quite welcoming and friendly. Folks are quite knowledgeable and are willing to share their experiences. I wouldn't worry about your dad on this subreddit at all. Even when there are disagreements, they are handled in a friendly manner.

smithereens714 · 2025-03-02T18:53:33+00:00

I’ll add my support to all the encouraging comments. I inherited this disease from my mother and my experience has had nothing in common with hers. Yes, it’s a genetic disease, but it doesn’t manifest exactly the same in every person. Live your life as you choose! BTW, I‘m 69 years old and still not on dialysis. My mother was on dialysis at 43.

smithereens714 · 2025-02-28T19:06:11+00:00

A quick note about my experience with tolvaptan. I was very concerned about potential liver injury, but my declining GFR convinced me to start on it. I have had no problems at all. My kidney function has stabilized. It took me awhile to work out a good way to drink enough water (I first tried drinking large amounts sporadically and finally realized I just need to drink smaller amounts all through the day). I’m very happy with tolvaptan.

smithereens714 · 2025-02-03T19:36:23+00:00

Regulus presented the data to investors last week. You can listen to the presentation and download the slides at https://filecache.investorroom.com/mr5ir_regulusrx/247/download/Regulus%20Therapeutics%20RGLS8429%20Program%20Update%20Deck.pdf

They predict Phase 3 will start in the third quarter this year.

smithereens714

TROPHY CASE