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Hoping you are well enough to benefit from the cure that is 3-4 years away.
I am experiencing daily bouts of nausea, vomiting, diarrhea and extreme drops in blood pressure. For the past 2 months now. I am currently in CHR and have been done with chemo for one month. Didn’t have any of these issues while on treatments. Any thoughts or similar issues out there? I’m just wondering if it’s the Amyloidosis or a result of nerve damage from the chemo? I’ve had bacterial and parasite tests done but no evidence of either. Also had a recent echocardiogram which was normal. No-one… read more
How about a cardiac MRI?
Hi Donna, I had terrible Carpal tunnel in both hands. Unbelievable pain. I underwent surgery for it and the relief after a few days was very noticeable. Today a year after this corrective surgery, my… read more
What are the most expensive meds/treatments for Amyloidosis?
Excellent. Glad that you were able to get some assistance.
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.
I've gotten five different dx from five different specialists. However, none want to put the puzzle together. Most recently, my PC thought I'd had a heart attack-severe shortness of breath, exhaustion, cough, abdominal pain, and chest discomfort. Hospital performed a bunch of tests - stress test was normal and the echo showed mild left wall thickening and mildly enlargement w/grade 1 diastolic dysfunction - the right aortic valve is trileaflet w/sclerosis and mitral valve has calcified annulus… read more
Hi Sandra, to confirm amyloidosis. I had a heart mri that showed suspicion of amyloidosis. I then had a nuclear scan to confirm. I have the wild type. Hope this helps.
I have had surgery in the past, and it does work wonders. Mine is mostly in the joints of the hands, getting worse. Some days hard to open and door or a door handle.
I solved my edema problem by water drinking an electrolyte drink. My beverage of choice is unsweetened coconut water. Apparently electrolytes help push out excess water.
Does anyone that is on Vyndamax have the support of Pfizer's patient help plan for help in handling the costs of the medicine? I was approved by Medicare and Tricare but the co-pay is still outrageous and unattainable ($2860 for 30pill/30days.)
Thank you, Joel. I was approved by Pfizer's Patient Support Program and am now taking the Vyndamax.
I know I need to exercise but I can’t go out by myself. There’s always the potential to pass out. What exercises can you do by yourself at home? It’s very frustrating. I feel so much better when I’m out and moving around. There’s only so many times you can clean your house! 🙄
Thanks MaryAnn! I actually bought a chair yoga dvd. So I’ll be starting as soon as I get it. Had chemo yesterday so not feeling up to doing to much 😞
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