Im educating MY provider...most doctors are clueless on amyloidosis. I am only the second case for primary GP and ONLY case fir urologist.

Much of the automated information responses on amyy are either partially or wholly erroneous due to a lack of data input from the most recent amyloidosis research studies.

My amyloidosis cardiologist at University of Pennsylvania sees more patients than most such doctors. According to her, patients are living much longer than stated in the statistics posted on the internet.

Those statistics don't reflect the current or more recent experiences of amyloidosis patients whose diseases have been managed properly by doctors at Amyloidosis Centers of Excellence the past 4-5 years or longer.

If you depend on inexperienced physicians who think prescribing drugs that are better suited for typical heart failure patients is the only approach, you will not do well. You will not live as long as possible or experience stabilization of your disease if you are in remote areas of the country and don't, or can't travel to better medical facilities.

Vyndamax isn't a panacea, or all-in-one miracle drug. It does a minimal amount of good and in the absence of other therapeutic measures, it is not nearly enough for most with ATTR-CM from wtATTR or hATTR. Stem cell transplants and other therapies for AL amyloidosis must be employed in an active multidisciplinary approach to stabilizing AL.

Some need electrophysiologist intervention and others need drugs such as dofetide, an anti arythmia drug which is superior to amiodarone. Your most local community hospital is most definitely not up to the task of management of any form of amyloidosis.

No Mary. I’m not. Now I’m looking for a depleter to be approved 🤞 the reason why I posed this question is newbies come on here and things are 4 years old. Things have changed quite a bit since then. I don’t want them to lose hope by what they’re reading on here.

Look up the Amyloidosis Support Group. They have many YouTube videos and are based out of Chicago. There are separate Facebook groups for AL Amyloidosis and fir the wtATTR-CM group.

Hi Theresa!
There are some new treatments in the works, for AL.
Are you eligible for Car-T?
Hugs!