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charliedelta (@charliedelta)

Polycystic kidney disease (PKD) and future planning

Kidney & Bladder | Last Active: Sep 26 8:27am | Replies (37)

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I asked her about an alternative to diet. At 84 I enquired with every morning another surprise I am still alive, why can’t I live out my final days not fretting if I may have too much potassium . I asked about 2 things
1. Any current drugs that bind with the potassium to remove it from my body
2. Since wondering what my potassium level is between monthly tests I asked about a simple home potassium tester I found online and was it available here
Hi Jerry;

I apologize for the late reply. It took me a while to find some answers for you. There are two potassium binders available in Canada: Patiromer (Veltassa) and Lokelma. Neither are covered by government plans. If you have private insurance it may be covered. I asked the pharmacist about the cost, but she hasn’t gotten back to me. You can speak with your Nephrologist or family physician about whether these medications are appropriate for your case.
I think this is the home test you may have been referring to regarding potassium testing at home. It’s not available yet. However, you can try to contact the company for more details. Possibly they are doing research trials and testing still.
You can sign up for updates on their site.
If you have other questions, please let me know. Karla

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Replies to "I asked her about an alternative to diet. At 84 I enquired with every morning another..."

I have just been approved for financial help from AZ&ME Prescription Savings Program for the mentioned drug, Lokelma, Potassium Binder. In the US the cost is $2,000. My insurance would have paid half. However, because I am low income I qualified for free meds for the next year. The drug has to be taken very carefully, i.e. with close supervision. I have not yet started and am still researching, if you want more info on this program please let me know. Your nephrologist and staff can help you with qualifications needed. Kitmus