Rob is correct. Tafamadis is supposed to slow down the disease not improve it. There are other drugs being tested that can silence the amloids from coming out of the liver like Patisiran. This drug could keep the disease from getting worse. It is hard to get into the Phase 2 clinical tests however and is not fun with 60 minute preperation and 90 minute drip every 3 weeks and you may receive the Placebo. Jeffrey

Hello JamesSalemo I have wild type Amy, have had it for almost three years and would urge caution before you stop Vyndamax. I have also been told I am in II and III without further definition and three years later I am still with the group. I was not in very good shape when I first complained about shortness of breath. I didn't know what to do but always ask the Cardiologist before I do anything. I started with the Basic Metabolic Panel and worked to understand it. I saw that I really had bad numbers and decided to try and improve them. I followed all instructions and advice and brought all the numbers up to read much better. I had really bad numbers but no symptoms but my heart has some problems but have not getany worse in 2 years.
Think twice before you take such a radical decision. No harm no foul seems to fit your case. There's always some hope. Regards Roy2 ....... and I could be wrong, I'm not a Cardiologist.

MaryAnn: Sorry to hear that, but at least they are diagnosed and can access treatments. My amloidosis is wild-type. It was diagnosed years later than should have been the case.

I see people mentioning Tafamadis and Patisiran as only being available in clinical trials. My husband has been on Vyndamax/Tafamadis for nearly 2 years as prescribed by his cardiologist and has been receiving Onpattro/Patisiran for nearly a year, again prescribed by a cardiologist. He has gotten these drug, NOT through clinical trials, but merely being prescribed by the cardiologist. So I don't think that in US you need to find a clinical trial, only a neuro or cardio doc who will prescribe. BTW, we are trying to make the switch to Amvuttra so as to not have to go to an infusion center every 3 weeks for a total of 3-4 hrs.

Sorry to hear that - I am now in stage 4 heart failure and Tafamidis has not worked. My only hope is a heart transplant and I am on a waiting list at Mayo Clinic in Jacksonville, FL. I have been waiting 3 & 1/2 months as an inpatient with Mayo but there are no guarantees - trying to keep the faith.