Cardiac Amyloidosis

Hi Bobby, I have not heard of that condition but have learned that when it comes to the heart there are many specialist. I would plan on at my next follow up ask plenty of questions, I know when I was going thru a blood issue the Doctors at Mayo were very patient to explain the issue with me in layman's terms. As they say knowledge is power and at least for me it was a relief to understand a situation that I was confused about.

Hi Bobby, I have not heard of that condition but have learned that when it comes to the heart there are many specialist. I would plan on at my next follow up ask plenty of questions, I know when I was going thru a blood issue the Doctors at Mayo were very patient to explain the issue with me in layman's terms. As they say knowledge is power and at least for me it was a relief to understand a situation that I was confused about.

The surgery was for hypertropic cardiomyopathy and the andurism. The heart tissue was in essence a biopsy which after weeks was determined to be amyloidosis. The cardiologist sent me for the nuclear test. The nuclear test contradicts the biopsy. Physically I am told that I am much healthier than others. But the fact remains that the biopsy and nuclear imaging are in conflict. The results of the studies show the drug vyndamax to be only marginally better than placebo. Who would pay $250,000 for that drug?

My husband was diagnosed last year with Cardiac Amyloidosis at Mayo Clinic in Jacksonville FL. We live in Virginia so when we got to VA we called his other Cardiologists who have been treating him for other issues. In VA this group of Cardiologists have an Amyloidosis Clinic. My husband met the cardiologist in charge of the clinic and he told my husband he needed to start Vyndamax. When we heard the price we jumped from our chairs. But he was very kind in calling the Pfizer representative who visits this doctor and asked him about the Pfizer Copay Card. Pfizer and this physician talked about how this card worked. My husband has never being charge and he guesses that it covers everything that the Insurance does not covers. Ask your cardiologist about this Pfizer Copay Card. It worked for my husband. Strange that your cardiologist didn’t mention it. My husband is doing well and doesn’t have side effects with Vyndamax. This medication doesn’t cure Amyloidosis but slows it down enormously. My husband has Right side Heart Failure, takes Cardizem and a diuretic. He is doing well. Amyloidosis caused his Heart Failure and the damage is there, it is irreversible. I wish you can get information soon. Get well soon.

Thank you Dana for answering my post. My husband is seeing the cardiologist tomorrow. They will be discussing the heart biopsy. He has a wireless pacemaker and because of that when they did the MRI they didn’t possibly get a true reading. He is on a medication called Vyndamax. It’s fairly new on the market. Pfizer has no side effects listed as it’s so new. My husband complains of terrible leg pains. He thinks maybe arthritis has developed. He never had these leg pains before taking the medication. Have you ever heard of this medication?

@jeannepasquinucci

Can you tell me what prescription plan your husband is on that covers your amyloid treatment?

Thanks for your help as my plan does not cover treatment to any extent for these expensive drugs.

@jimnhcm Hi. He has Blue Cross Blue Shield with the Zero Copay authorization from Pfizer. You need to get your doctor to call the Pfizer pharmaceutical representative to have them to give you a ZERO copay to your insurance plan. If you have any questions let me know. Hope you can get the medicine.

@naiviv

I am just starting down this process.

If I have further ?s I would like to either call or text outside this forum if that is ok. My Doctor at Mayo said nothing about Pfizer. If I am typed as TTR I will have more questions, there are not a lot of people on this path in Montana.

Thanks for your response.

Jim