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Primary amyloidosis (AL)
Information and support for those with primary amyloidosis.
The 2 fronts of amyloidosis
- By apr · New reply November 11, 2009
- 2 replies
- Our Mayo Dr. explained that amyloidosis attacks on 2 fronts--organs and blood. Does anyone know more about this???? My husband 's bloodwork is still ok, but we are afraid his organ involvement is growing ...
Recurrent fevers and amyloidosis
- By TomT · New reply November 11, 2009
- 10 replies
- I was diagnosed with amyloidosis and multiple myeloma in February of 2008. I receive care from Mayo Clinic in Jacksonville Forida. I have been on a three drug treatment that has been very efffective in ...
Itching associated with Primary Amyloidosis
- By Constantvigil · New reply October 18, 2009
- 3 replies
- My wife was diagnosed with Primary amyloidosis three years ago. Melphalan has brought her Lambda count down to the normal range so she's been taken off it. However, she has intense itching, especially ...
Winning a battle,still fighting the war
- By Constantvigil · Posted September 17, 2009
- 0 replies
- My 72-year old wife was diagnosed with Primary amyloidosis 3 years ago and given 6 months to live. She's still fighting it but the doctor has stopped the chemo (melphalan) for several months because her ...
symptons ??
- By apr · New reply August 16, 2009
- 10 replies
- My 48 year old husband was diagnosed with systemic primary AL two years ago. He has had a stem cell transplant at Mayo with the followup chemo. He is currently taking Revlimid, on 21 days, off 7. He has ...
hand pain
- By justinelvn · New reply July 29, 2009
- 10 replies
- does anyone out there have pain in their hands --supposedly carpal-tunnel (SUPPOSEDLY CAUSED BY AMYLOID) and if so what do you do for pain ...
Doctors response to Amyloidosis information
- By Fulviaschild2 · New reply July 26, 2009
- 11 replies
- I would like to know how people's doctors have reacted when they were told that their patient (your loved one) had amyloidosis. I plan on taking the pamphlet about amyloidosis to each doctor. They missed ...
Another Statin Question
- By Thumbelina · Posted April 7, 2009
- 0 replies
- has anyone experienced a negative statin effect pertaining to kidney function? My husband takes lipitor and the 2 times he went off it for 1 to 2 months his urine protein spill dropped close to half (12 ...
Bladder Amyloid
- By cathyb · Posted February 6, 2009
- 0 replies
- Anyone out there that has been diagnosed with amyloid of the bladder? Also looking for anyone has had the DSMO bladder washes, Thanks,, Cathy ...
Amyloidosis and IPF
- By Mommalina · Posted January 9, 2009
- 0 replies
- Does anyone know if there is any known relationship between AL and Idiopathic Pulmonary Fibrosis ...
