Roy, I have been on a clinical trial study for the past three years with Vutrisiran/placebo. The brand name is Helios B. I just finished that trial and through my heart failure surgeon at Duke Medical Center I have begun a one year clinical trial with the actual product, no placebo involved. I am, of course, in high hopes that this will add value and longevity to my life. Jim Jones.

Hi Roy,
I've been on Vyndamax since June. This treatment is expected to slow the progress of ATTR-CM. In November I started Onpattro and already feel improvement in Capital tunnel, trigger finger, gastro issues.
In discussion with my Doctors, Cardiologist and Neurologist, they expect that this may have a positive impact on my heart, as well.
There is a trial underway with Vyndamax and effect on Cardio.
The current challenge is until you get a positive test for ATTR-PN, EMG or biopsy, you won't be prescribed Onpattro or Amvuttra, which silence the production of the TTR protein.
You need to insist on the EMG and skin biopsies as soon as possible.

I was able to get a grant to cover my deductible and then my insurance is paying for the rest of my Vyndamax. Talk to your healthcare provider about help with the drugs.

Roy2. I think the Pfeizer drug Vyndamax ( Tafamadis) is a key drug for Amliodosis
Contact them for possible free drugs..Jeffrey

Hi Roy2. . I can't afford the drugs, but haven't been told which one to take yet.
Leonard