Wild-type ATTR Amyloidosis (ATTRwt): What meds help you?

@sheriff50 The PYP is actually imaging, not a test. It takes a big chunk of your day, but necessary. No pain or discomfort. Just time-consuming.

Anyone who can help us understand the PYP test and the problem it diagnosis!

@sheriff50
The test really isn't that long .... open array scanner..probably less then an hour. Had mine week before last....information derived shows where your amaloyd deposits are so the effected systems can be addressed and not overlooked.

They inject you with a tracer and wait a few minutes for the tracer to infiltrate your tissues , then scan. Don't hesitate to get this test it is essential to identification and targeted treatment.. Best Wishes

Took me 82 days start to finish, yesterday got the first Amvuttra injection.

My first indication was 1/23 at the Mayo Clinic Rochester. The afternoon before i was scheduled to leave i was playing with Chat GPT for the first time and put my info and history into the program including results of an echo. I was being seen in cardio for rythem issues... The AI raised concern as i had put bilateral carpel tunnel and bicep rupture history. Contacted provider at 330pm on Friday, got me in for labs and showed 2.5 poits high kappa lambda and m spike high by .54. Flew home .

Back to the clinic 3/17 , all necessary appointments arranged, diagnosis of TTR 3/18, a little longer for genetic testing to determine wt rather than hereditary. Then classified as Stage 1 ATTR CM.

I chose treatment with Amvuttra , and because Amvuttra will be administered at home, away from Mayo it caused an additional delay . Had to get my PCP on board as well at the hospital and infusion center. Amvuttra has to be given in a clinical setting.

Amvuttra is covered under Medicare part B, not D. Doesn't fall into typical drug rules for Medicare patients. It is a more patient friendly environment. In the case of Amvuttra it is more financially and procedurally beneficial to be on Medicare than private insurance. You really need specialty pharmacy and hospitals that are familiar with the process. We'll see how it goes from here.

I was at a routine visit in January 2024 and my cardiologist said I needed a PYP scan based only on bilateral carpal tunnel syndrome . Three days later scan was done and confirmed ATTR CM . Took a month to get genetic testing back and I have wild type. Cardiologist got me approved for Atturby (acoramidis) in February and have taken it ever since . It’s an oral pill that stabilizes the misfolded proteins the liver makes so they can be flushed out of my body . I was enrolled in the Crispr Cas 9 study in March 2025 and received an infusion ( double blind study ) in May where the infusion (this is a one time infusion)cuts the genes creating the misfolded proteins . The trials were successful in Europe and currently ongoing in the states . I will find out May 19th if I got the drug or the placebo . If I received the placebo I will receive the infusion of the drug then . Houston Methodist has an Amyloidosis conference annually and this years is May 8th and is very informative with Dr.s from all over the country. Good luck and if there’s anything I can do or if you have questions, please reach out .

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@markwithwildattr
Wishing you all the best. Keep me/us posted.
I'll be back at the clinic for follow-up on 5/19. Interested to know more about your CRISPR results.

Here for you as well, reach out anytime
Take care
Vince