Amyloidosis

[Flimmeri]

Has anyone been diagnosed with Amyloidosis of the heart which is causing Afib permanently?

How are they being treated, etc?

[jeanjeannie50]

Sorry, but I don't think I've ever heard of this. You may get a better response from members of the British Heart Foundation if you post there:

healthunlocked.com/bhf

Jean

[jeanjeannie50 in reply to jeanjeannie50]

If you type Amyloidosis into the Search Health Unlocked box, top right of this page it will throw up posts where it's been mentioned.

Jean

[Flimmeri in reply to jeanjeannie50]

Thank you Jean! I guess I don’t check my mail overly well, since you answered this already two months ago. I will check all these, thanks.

[Pita]

Yes, My father had Amyloidosis of the heart and permanent AF, but had AF for many many years. Unfortunately Amyloidosis was not diagnosed until it was too late for him, he passed away after a battle with rare cancers in 2008.

[Flimmeri in reply to Pita]

Thank you Pita for your reply! I never saw it earlier. So sorry for you loosing your Dad. It is a nasty thing!

[Tricia239]

Hello, Yes, a good friend of mine has been similarly diagnosed. She has tried to open your post but for some reason she can't, but she will try again in a couple of days. All I can tell you is that she is under the care of The Royal Free Hospital although she does see a local cardiologist as well. She has also had a course of chemotherapy but beyond that I'm not sure what medication she is on. Hopefully her 'tablet' will get over it's strop and she will be able to contact you very soon. Best wishes, Tricia

[Flimmeri in reply to Tricia239]

Thank you very much Tricia!

[Flimmeri in reply to Tricia239]

Hello Tricia! How is your friend doing? Is she getting chemo and how is that going?

[Tricia239 in reply to Flimmeri]

Hello, My friend is doing OK - considering, but she has more 'bad' days of late than she did a few months ago. She isn't having chemo and I don't think she would take it even if it was offered to her this time around because it made her feel so groggy last time. She has her bloods done regularly and according to those results her various levels are pretty good and so she manages to keep a very positive outlook but to my mind she is a little more frail than she used to be. How are you keeping? Best wishes, Tricia

[roseanneh]

My 90 year old mother was diagnosed with cardiac amyloidosis last summer. She had been experiencing afib for at least a year or 2 prior to the diagnosis - but we don't know which came first, the amyloidosis or the afib. For about the same amount of time she has also experienced skin problems (erupting, itchy skin ulcers) and gastrointestinal issues, both of which we are coming to believe are part of the amyloidosis. About 3 months she began treatment with Tafamidis (Vyndamax). Currently, her afib, while still present, is much more controlled. We are really only beginning to navigate this disease and don't know how much improvement to expect.

[Flimmeri in reply to roseanneh]

Thank you Roseanneh! You are the second person to reply, so obviously amiloidosis is not common to cause Afib. It sounds like it is not a nice disease. My friend is waiting to hear if he would qualify for this expensive drug Vyndaqel, which slows down the progression of the amiloidosis. All the best to your Mom❣️