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Can Anyone Share Any Positive News As To How Amvuttra Is Working For Them With Hattr? Im About To Have My 4th Shot And On Diflusinal
I haven't got any good news . Since having this drug my dad hasn't been the same . We are now off AMVUTTRA . X
What Is Recommended For Stiffness And Or Pain?
I am getting velcaide injections every other week. Sometimes I have stiffness in my back and swelling in my lower legs. Sometimes use Tylenol for pain and was given tramadol. I don't want to use too much pain medicine. Any suggestions? Injections are working to lower protein numbers.
I know it’s uncomfortable but keep moving. Walking is great.
Why Is The System Hanging?
There is something going on with the site. I make comments in the "how are you today" and then hit send. The system sort of hangs while saying "working". Often the system will lose what I typed..
So what is happening?
Of all the apps i use this is the klunkiest and most difficult to navigate and participate that said, well it's all that there is for us really.
Good luck
Clinical Trial
I received this information on ni006, which shows signs of removing Attr amyloid from the system. Phase I was completed earlier this year.
“The drug is moving directly to Phase 3 studies
A phase 3 trial will begin by the end of the year/beginning 2024. The company who has acquired the drug and is running the phase 3 is Alexion.
Enrollment for the Phase 3 trial will be worldwide including the US. I recommend to contact alexion US or a local specialist in cardiac amyloidosis to identify a… read more
i am not eligible because o have sclerosis of the liver
Apart From Possible Side Effects ,is Diflusinal As Good As Tafamadis To Stop Misfolding Of Amyloids For Attrwt
What Is Maintenance Chemo?
How Do I Post A New Comment
We’re there are a blank space or weir answer here
How Do You Cope With Seasonal Changes And Amyloidosis?
🥵👍🏽
Anyone Here Have Neg Bone Marrow For Amyloidois And Neg Fat Aspirate? But Docs Push For Other Organ Involvement? MGUS And Bence Jones.
Yes, I know. But their concern is, because they keep growing, it can go into a vital organ.
Kidney Function During Chemo Treatment?
My husbands EGFR dropped from 37 to 27 after 3rd chemo treatment, has anyone else experienced this?
We are extremely fortunate in the aspect that he is 100% VA disabled, so we pay nothing for treatment. I always say you can find something good in something bad! Ernie said thank you😘
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