I mainly have fatigue and shortness of breath. I started Vyndamax almost one month ago. I force myself to walk for exercise, even when I don't feel like it. I think mine was caught in the earlier stage, but it took 5+ months for me to get started on Vyndamax. I am 50 years-old.

Keep in mind that someone with cardiac AL may progress much more quickly than someone like you with wild type. Wild type typically progresses more slowly than any of the other major types of amyloid. Many different factors also need to be considered. Someone who was diagnosed early and started on treatment quickly may have a completely different journey than someone diagnosed and treated late in the course of the disease. As you know, this disease is very individualized and people react differently to the treatments.

I have no idea if my husband's disease is "typical" of ATTR-CM, but I will share with you what the course of the disease has been for him. It isn't pretty. He was only diagnosed 18 months ago, but was pretty debilitated by then and probably had signs of ATTR-CM for about 12 years before. He has been on Tafamidis for about 15 months and patisarin for about 9 months with no measurable, positive changes. He has steadily declined in independence over these past few years, but more dramatically in the past 4 years, IMO. His symptoms progressed in spurts, meaning he earlyon had BCT and spinolothesis (SP?), then had multiple cardiac issues that were life threatening about 8 years ago. Those sort of plateaued with focused treatments, including inserting a pacemaker, before peripheral neuropathies became the complaint that was addressed by the docs for several years. Neuropathies were misdiagnosed as diabetes related. He started to have slurred speech too and his tongue was very swollen from the amyloid beginning about 4 years ago. Then he had a severe episode of what was diagnosed as vestibular neuritis that destroyed his balance - it was later determined to be amyloid related in the cranial nerves. His lack of balance and dizziness really took away his independence and resulted in numerous falls that have been cumulatively disabling. He also had had periods of autonomic nervous system symptoms over the years that are now being attributed to ATTR-C. He has serious kidney and liver damage now and is having severe orthostatic hypotension multiple times a day that the specialists say is cardiac related. Swallowing and speech are steadily becoming more and more problematic and I fear his choking on food and pills. And recently he has been experiencing short term memory loss that could be ATTR-related. He has lost nearly 100 lbs over the past 2 years!

As I said not a pretty picture, but it is our reality. He was diagnosed late and started too late on the meds that could have helped him. I hope you have a better course and I pray for successful treatments for all of you with any type of amyloidosis.

Recently had my 3rd echo ,my cardiologist said I'm stable right now after comparing the last3 echo . been on Vyndamax 3 years feeling much better most of the time. I also am a lung cancer surviver have COPD. I am on oxygen .Walking is most difficult due to severe lumbar stenosis and shortness of breath.I"m not as tired as I used to be.Not napping so much.
My balance isn't great , especially when I try to turn. I do walk with a rollator walker so i can sit and walk a little longer. I haven't had neuropathy unless my arthritis gets really bad . I'm 85 and grateful for what I have.
If I watch my sodium and fluid intake I have more good days than bad now

Thank you Mary Ann! So many issues I’m having are similar, swallowing issues, memory, etc. my cardiologist told me I have probably had this cardiac Amyloidosis long before I was Dx. Despite taking it 1 day at a time, it’s important I get a handle of where my disease is going.
Again..thank you! Our support herein is growing!