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Has Anyone Received Venclexta For A Second Time And Had A Good Response?
Is Anyone Using Partisiran, Inotersen Or Vutrisiran With Vyndamax In Treatment For CATTR-CM. Same As HATTR. Success? Cost?
After 3 years being diagnosed with ATTR-CM I am on the same basic treatment with few symptoms. BUT, my Cardiologist has no experience with Amylodosis and I cannot help thinking we should at least compare to the original diagnosis and maybe need to concentrate on gene silencers.
Hello….Those Of You With Hattr. Did It Tend To Run In Your Families? And Was The Age Of Onset Younger Than 75?
My mother had a heart problem and I was told she had hATTR, her previous generation had a member with heart problems but who knows whether any had hATTR since not diagnosed at that time. My mother… read more
Has Anyone Been Contacted By Pfizer That Their Participation In Vyndamax Patient Assistance Program Ended 12/31/2023?
I was told to contact HealthWell Foundation to apply for grant funds to cover cost of Vyndamax on reimbursement basis. I’m on social security so finding a spare $2,600 to start the program—-and assuming full and timely reimbursement by HealthWell—-is a major change and risk.
We have only been covered by the Hopewell grant since July and will have to put in a new request to re-up in June. So I am not liking hearing that they are not answering the phone. Hope you get some… read more
What Lessons From Your Amyloidosis Experience Are You Applying In 2024?
Eat and drink healthily, and exercise to the extent you are able.
Is There Any Benefit In Physical Exercice When Your Shortnesses Of Breath Is Severe Or Should You Better Avoid It?
If you have severe shortness of breath, especially due to cardiac amyloidosis, it's crucial to talk to your doctor before starting any exercise routine. While regular exercise can offer benefits like… read more
Started 6th Wk Of Chemo. Suddenly Feeling Good. More Energy, Head Not Fuzzy, More Stamina. Any Answers?
So true. I really overdid it beginning of spring on the deck. I paid for days. WIll not do that again.
Is Wild Type And Hereditary Attr Treated With The Same Meds
Anyone Know Where Acoramidis May Be Approved And If They Work Better Than Tafamids?
Thanks for adding the update Joel! Here is the latest press release that shows November 29 as the PDUFA action date. https://investor.bridgebio.com/news-releases/ne...
How Does The Cold Affect Your Amyloidosis?
It does not affect me at all.
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