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Anyone Not Medicare Eligible Dealing With Pfizer Changing Their Co-pay Assistance Without Notice? (57 Years Old, Wild Type ATTR)
A lot of pharmaucetical companies are reducing their income allowables. Pfizer didn't go down as much.Jeffrey
Left Ventricular Ejection Fraction (LVEF) Dropped Significantly Over Six Months.
In June '23 my ECHO showed LVEF of 65%; this morning's ECHO estimated 43%. Probably not a good trend but I am on Tafamidis now. I suppose I should get busy with regular exercise and lose some weight. Agreed?
Also my doctor lets me do a full gym workout scaled back about 25%. I feel like I’ve joined the human race again!!
Have Any Of You Guys Been Receiving Helios B/Vutrisiran?
How can anyone afford vyndamax?
Has Anyone Been Taken Off Toporol And Had Their Blood Pressure Go Up? Or Do Any Of You Have High Blood Pressure And If So, What Do You Take?
My husband was taken off toporol after years of taking it and amlodipine to control his blood pressure. He is now taking Lisinopril and doxazosin and his blood pressure has steadily increased even though the doctor has increased the meds.
Thank you for taking the time to answer my question. I know you are going through a very trying time.
Trial NI0006 On ATTRwt Drug To Remove Amloid Fibrlis From Heart. Will This Remove Amloid From Muscles, Nerves And Spine Also?
I have minor damage to heart but lost unexplained strength in left leg.
Abstract
Background: Transthyretin amyloid (ATTR) cardiomyopathy is a progressive and fatal disease caused by misfolded transthyretin. Despite advances in slowing disease progression, there is no… read more
Prognosis With Wild Type Amyloidosis
Wild type of Amyloidosis. How long have you had it?
Are you on Vyndamax? How long taking Vyndamax? Any prognosis from your doctors?
I was diagnosed in October’23, 1st stage. Been on Vyndamax since mid November. Any help appreciated.
I was diagnosed with wild type last year
Been ln vyndamax for about 6 months. Been doing better. No side effects. I was in stage 2.
Carpal Tunnel Is A Very Common Contributing Symptom Of Amyloidosis. I Had Surgery Which Was Successful For 1.5 Year And Now 7 Years Later
It is back worse than ever. What is the mechanism of Amyloidosis that causes carpal tunnel why does surgery help temporarily and why are second surgeries usually not successful? My CT impacts the quality of life certainly more than the heart issues at this stage of my disease. thanks, Steve
I had CT surgery 10 yrs ago before knowledge of amy. I'm 78 and plan to have it again. Also, have polyneuropathy which effects bodily movement.
I Have Amyloidosis With Auto-Immune Disease! My Biggest Issue Right Now Is Fatigue! I’m Still Of Working Age. Any Suggestions To Help That?
How Genetic And Environmental Factors Induce The Production Of Light Chains Production ,beyond The Normal Range .
Dear Mr. Vern - staying back in New Delhi ,India and couldn't go to Seattle. The treatment regimens for AL Amyloidosis seem almost similar across the continents. The Doctors tailor the treatment on… read more
I Just Finished My Three Year Clinical Trial With Helios B,, Anyone Else In This Form That Has Undergone This Trial With Helios B/Vutrisiran
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