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Thanks, I did it. All the best
Hi, Thanks For Reading! I Am Currently In Remission From AL Amyloidosis.
I'm just wondering if anyone's AL has recurred after remission, and what the next treatment usually is. (I can't do the bone marrow transplant.) Thanks!
Is Anyone Taking Vyndamax61 For Attrcm? If So Are You Satisfied ? Richard 5
Same here my friend. 3 years too.
What Is The Best Medication For Attr-cm
Alnylam Presents 18-Month Results from the APOLLO-B Phase 3 Study of Patisiran in Patients with ATTR Amyloidosis with Cardiomyopathy
As previously announced, the U.S. FDA has set an action date of… read more
Costs Associated With Amyloidosis Treatments
What are the most expensive meds/treatments for Amyloidosis?
Excellent. Glad that you were able to get some assistance.
Failure To Diagnosis
Has anyone proceeded to file any legal action against their doctor for failing to diagnose ATTR-CM or any form of amyloidosis? If so where are you in the process?
This is a common situation. All types of Amyloidosis are rare diseases and difficult to diagnose. It took me 10 months and a whole lot of medical appointments to finally get an ATTR diagnosis and… read more
Amyloidosis Found In The Breast
I found out last Oct. that i had amyloidosis in my breast. At first was doing a biopsy for breast cancer, which I have had before. I wasn't told what type I had and no treatment was offered. Today I just had a spot on my breast opened up and the doctor things it was the amyloidosis. Someone help me with answers please.
Most major medical centers have speciality Amyloidosis clinics:
Cleveland Clinic, where I go, UPMC Pittsburgh, John’s Hopkins in Baltimore, Mayo Clinic, etc.
AL Amyloidosis W/ Neutropenia
I have read that people with AL amyloidosis who have neutropenia may need to avoid foods that are more likely to cause infection. Soft cheese, blue cheese, mayonnaise, raw eggs, and yogurt are foods that can contain higher levels of bacteria. So, should drinks like kombucha be avoided as well ? Could that be a cause of rectal bleeding w/ bowel movements ?
Ask your specialist. Don’t follow online advice from lay people.
End Of Life Question
I’m seeking answers from those who have cardiac amyloidosis long term. What symptoms are progressing on you rapidly.
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… read more
What Can Be Done To Treat Amyloids In The Scalp And In Tendons?
I have amyloids under my skin, a torn cuff rotator and issues with tendons at the back of my knees
Hi Shaz, lets hope you stay stable, l also had a carpal tunnel op way before being diagnosed with amyloidosis. Take care.
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