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December 13, 2025
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A MyAmyloidosisTeam Member

Kathleen… I’m hoping that in 2026 a depleter makes it through clinical trials so it can remove the existing amyloid

December 23, 2025
A MyAmyloidosisTeam Member

I would suggest and of course, please correct me if I'm not thinking correctly, but, AL is systemic. 'It' does not decide where it goes. It drift in the blood until it gets stuck somewhere. It affects the entire body - head to toe - except it doesn't cross the blood/brain barrier.
I suggest, it isn't noticed or even considered until it affects the function of a major organ.
I suggest, it affects EVERYTHING to a greater or lesser degree.
Think about a heart affected by amyloid. On the outside it appears larger, the inside is smaller. It is weak.
What would eustation tubes look like if they were infiltrated by amyloid? and what would be the affect? larger on the outside? smaller on the inside? would it lead to a pressurized feeling? Popping? What would help? Stints?
What about the urinary tract? difficult urination? (think about the tubes)
What if its in your throat? would it change your voice, affect swallowing?
Tongue? Enlarges, bite it all the time. Ouch!
Gut? Irregularity, constipation, diarrhea, pseudo-occlusions.
Eyes? Dry, itchy, feels like glass chards, visual disturbances - occular migraines(look it up).
Skin? Bumpy? scaly? dry? itchy? affecting hair growth, or lack of it?
Blood vessels? skin bruising, purpura?
Blood vessels in the brain - micro brain bleeds, pressurized headaches, nausea and vomiting, broken blood vessels in the sinuses and face?
Nerves in your hands, feet, neck? periperal and autonomic neuropathy. In some cases, extreme pain.
And what about hormones? and those glands that produce them? can it affect the output? Sometimes too much, other times not enough? can changes fluctuate?
I don't know what researchers are focused on - it seems mostly drug treatments. I would like to know more about what researchers are doing to evaluate the 'structural' nature of this disease and how to make life a bit more comfortable for those trying to live with it, without having to resort to toxic drugs with their own side effects.
Just saying . . .

December 22, 2025 (edited)
A MyAmyloidosisTeam Member

Where is trial

December 23, 2025
MyAmyloidosisTeam

Can cardiac amyloidosis lead to other types of amyloidosis like macular amyloidosis?

Cardiac amyloidosis doesn't lead to or cause other types of amyloidosis. Instead, cardiac amyloidosis is what happens when amyloid proteins deposit in the heart as part of systemic amyloidosis.

The type of amyloidosis you have (like AL or Show Full Answer

Can cardiac amyloidosis lead to other types of amyloidosis like macular amyloidosis?

Cardiac amyloidosis doesn't lead to or cause other types of amyloidosis. Instead, cardiac amyloidosis is what happens when amyloid proteins deposit in the heart as part of systemic amyloidosis.

The type of amyloidosis you have (like AL or ATTR) determines which organs may be affected. These proteins can deposit in multiple organs at once, including the heart, kidneys, liver, and nervous system.

So rather than one type causing another, it's more accurate to say that the same underlying amyloidosis can affect different organs simultaneously. The heart is just one possible target organ for amyloid deposits.

If you're concerned about other organ involvement, it's important to discuss this with your doctor, who can monitor for symptoms and run appropriate tests.

December 13, 2025

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