Quick Links
About MyAmyloidosisTeam
Powered By
I noted on ancestry.com my ancestors died from cardiomyopathy which was probably TTR. my mom passed at 93 with heart failure undiagnosed as TTR.
calf and hamstring muscles severe pain when standing or trying to walk
after JUDY AMYLOIDOSIS
I definitely need to control my salt intake . I love to cook but fry a lot . I use olive oil but it’s still fried . I’ve been having bad acid reflux for months now . I’m really going to watch what I eat from now on . That was a good read . First thing I’ve read about diet on this disease . I’ll be down at Stanford for more tests Monday and I’ll ask more about a healthy diet . But our main concern is to determine what kind of Amyloidosis I have and where . I could use any advice about how to live… read more
Heart biopsy procedure sucks but only last a few minutes. I can’t believe they do it while patient is awake, so yes it sucks. The bone marrow biopsy is piece of cake. My brother did faint however soon… read more
Thanks Paula for more information.
In answer to the question regarding wild type and CM. I believe most everyone that responds to this post would qualify for those markers. What I have loved is people expressing their gratitude to God… read more
I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.
You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.
Just curious ... Is Amvuttra (Vutrisiran) the same as OnPattro (Patisiran) or in the same category?
It is the same as onpattron. I will tell you my opinion on this drug . My dad has received two injections of this drug and he hasn't been the same man . He has had an adverse reaction extreme pain in… read more
There’s other blood markers that indicate but don’t prove the existence of amyloid deposits (aka fibrils). There’s a nuclear imaging process that provides active imaging where you can see the fibrils… read more
Recent diagnosis from bilateral CTS. Mayo says ATTR, Cardiologist suspects wild type. Kidney, liver cardiac tests normal. Anyone receiving tafamidis therapy to prevent further progression of disease. In my option, seems tragic that a patient has to progress to some level of cardiac failure before starting treatment if Vindamax or other tafamidis can slow progression.
I have PN as well. Entire left side, and now moving to my face this morning. My son got his meds in 3 days. It will be a week this Tuesday for approval of grant. How do you pay for med?
Hi. I had a numbness feeling in my left arm and hand for a few weeks about 6 months ago. It disappeared so I didn’t think too much about it. It’s back again now for a few weeks and I sometime get slights pins and needles in the tips of my fingers. Could this be a symptom of neuropathy? Could it be there for a few weeks, disappear and then come back again? I have hATTR cardiac Amyloidosis and am in Vyndaquel for 8 months now. Thank you.
