Patient Comments: Amyloidosis - Treatment


What treatment has been effective for your amyloidosis? Submit Your Comment

Comment from: husband of, 35-44 Female (Caregiver) Published: June 11

My wife has hATTR (hereditary transthyretin amyloidosis), she gets tafamidis and green tea extract, to reduce the amyloid production with tafamidis and remove the misfolded ones with the green-tea. We'll see.

Comment from: Mark, 55-64 Male (Patient) Published: August 09

I took Velcade for 6 months and it worked real well for my amyloidosis. I have been in remission since December. I still get fatigued every day, but that's part of the disease. I understand that completely. You take 1 day at a time. I was diagnosed by a skin doctor and was very lucky. My ankles used to swell up during the day, but since taking a water pill, furosemide, every day, it has stopped.

Comment from: Rachelle, 55-64 Female (Patient) Published: October 21

Combination of cyclophosphamide, Velcade and dexamethasone, along with Lasix and various anti-nausea, anti-heartburn etc. pills have helped my amyloidosis. I have been in remission for almost 10 months. No transplants because of cardiac involvement.

Comment from: dianna, 45-54 Female (Patient) Published: July 31

I was diagnosed with amyloidosis in June 2013 after seeing my doctor with a lump in my stomach. The lump turned out to be a much enlarged liver. My oncologist tried low dose chemotherapy with Velcade, dexamethasone, and Cytoxan. This was initially to be 3 weeks on and one week off followed by an autologous stem cell transplant in November or December. By the 3rd week of August my liver was deteriorating quickly and my doctor decided we needed to go to transplant immediately. It took 3 weeks for my stem cells to start growing in the hospital and months of recovery, but a year later I am in remission and feeling better every week.

Comment from: Jean R.N., 55-64 Male (Caregiver) Published: November 06

Innovative treatments are now available (e.g., daratumumab) but this website mentions only dexamethasone. Most AL amyloidosis patients no longer die within 1 year (I just met a patient who is going on year 17). Readers, breakthroughs for amyloidosis and its cousin multiple myeloma are front-page news in medical journals.


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