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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 😞
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
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?
My prescription is exactly the same as RickKinseth. Morning and evening doses of Torsemide and about mid-day Spironolactone.
I have no summer tips. However, in England we do not have hot summers on a regular basis.
PS
I had seconds
😁😉
And desert
Call you cardiologist and get him to help you with the application for meds.
Not knowing where you live, I will just comment on how I established my team of doctors. Once my family doctor realized that I had a problem, he linked me to a lung doctor and a liver doctor. Lung… read more
Blood in urine? urge incontinence? slow flow? Have drs related it to ATTR, neuro involvement or just the aging process? What has been the treatment and does it resolve?
I still have to deal with it.
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