Amyloidosis Support Community

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Amyloid cardiologist

By Lala123 · New reply 4:10 am
Discussion in Primary amyloidosis (AL) · 3 replies
Hi , I live in toronto. I have been diagnosed with primary AL effecting heart and lung. I'm patiently waiting for my appt at princess Margaret hospital in two weeks. I just saw my cardiologist and he ...

Five million

By Brian · New reply June 17, 2013
Journal · 243 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Liver Transplant

By dmarie1516 · New reply June 6, 2013
Journal · 4 replies
My husband Rocky has had his third 3 month appt at The U of MN. He now has a Transplant score of 27. There has Been No further damage to the Organs! But the Nervous System is really taking the brunt of ...

Sensitive stomach skin

By Jellybabyjan · New reply June 5, 2013
Discussion in Primary amyloidosis (AL) · 4 replies
Hi My husband has been diagnosed with AL Amyloidosis for about a month now. He's got it in his heart, kidneys and nervous system. He's on a trial called REVEAL using the CVD regime. Had one dose and had ...

Dx 2/2012 Conjuntival Amyloidosis

By Blessedandfavored · New reply June 3, 2013
Journal · 3 replies
Oct. 2011 I woke up to a bad red left eye as though I had a terrible fight in my sleep. Was treated by OD for aprox. 3 months with no avail. Ref. me to an eye ear nose doc. Which he had no clue he thought ...

Hope

By apr · New reply June 2, 2013
Discussion in Primary amyloidosis (AL) · 4 replies
My husband was diagnosed with multi-organ amy in 2007. He had a stem cell transplant and was on revlimid. In August 2012, he developed lesions on his spine and liver. He was diagnosed with multiple myeloma ...

Aa

By Jananton · New reply May 30, 2013
Journal · 5 replies
Heading up to Boston in about a week for the 2nd visit since starting in the Kiacta trial. Planning to meet 2 women who also have been dx with aa. We are a small group...anyone else out there ...

74yr old father-in-law diagnosed with primary AL...

By 2Daughter-in-law2 · New reply May 29, 2013
Discussion in Primary amyloidosis (AL) · 2 replies
Hi! Asking for any advice for my husbands dad- diagnosed with AL last week. Has been ill the past year and a half and diagnosis was missed until kidney biopsy and bone marrow biopsy last week. His kidneys ...

Potential New Drug for Amyloidoses

By arnoando · New reply May 28, 2013
Discussion in Cardiac amyloidosis associated with wild type TTR / isoleucine 122 variant · 1 reply
http://www.utsandiego.com/news/2013/may/ 27/amyloid-cardiomyopathy ...

Secondary amyliodosis??

By Lala123 · New reply May 22, 2013
Discussion in Secondary amyloidosis (AA) · 7 replies
Hi. I was wondering if anyone knows what kind of chronic infections or inflammatory diseases cause aa amyliodosis. They are suspecting I have that since amyliod deposits show on my right lung, stomach ...

AL-ANTIBODY- TRIAL LIVE IN THREE LOCATIONS

By Muriel · Posted May 20, 2013
Journal · 0 replies
AL-ANTIBODY- TRIAL LIVE IN THREE LOCATIONS NEOD001 TRIAL NOW LIVE AT THREE LOCATIONS IN USA: See our website www.amyloidosissupport.com near flames on top for locations and for the fact sheet…if you have ...

FAP-TTR-HEREDITARY- TTR TRIALS LIVE - ISIS

By Muriel · Posted May 20, 2013
Journal · 0 replies
HEREDITARY- TTR TRIALS LIVE - ISIS http://www.clinicaltrials.gov/ct2/show/N CT01737398?term=ISIS+FAP&rank=1 http://www.amyloidosissupport.com/ISIS_4 20915_final.pdf ISIS TRIAL NOW LIVE AT THREE LOCATIONS ...

NEOD001 for the treatment of AL and AA amyloidosis-information below

By Muriel · Posted May 15, 2013
Journal · 0 replies
NEOD001 for the treatment of AL and AA amyloidosis http://www.clinicaltrials.gov/ct2/show/N CT01707264?term=NEOD001&rank=1 http://www.amyloidosissupport.com/NEOD00 1_factsheet_122112.pdf press release ...

Bruising with Familial Amyloidosis.

By Sunshineatl · Posted May 12, 2013
Journal · 0 replies
I have familial Amyloidodis cardiac. I was diagnosed about a year and a half ago. I received a pacemaker a year ago but have been doing quite well since then until a couple of months ago when I started ...

Prognosis

By Lala123 · New reply May 11, 2013
Discussion in Treatment options · 10 replies
I have been diagnosed with amyliodosis from a lung biopsy. I have shortness of breath and constriction of opening my mouth due to large tongue. I know that it is also in my GI tract since I have been ...

ASG MEETINGS IN JUNE - LOTS OF AMY SUPPORT

By Muriel · Posted May 11, 2013
Journal · 0 replies
NYC MEETING June 1, 2013-see www.amyloidosissupport.com for details Sanchorawala – BU Wiesman- BU Osman- Mt. Sinai Hassoun- Sloan Suzanne Lentzsch- Columbia Thomas Brannagan- Columbia – ISIS TRIAL ...

revlimid maintenance

By Bmencher · New reply May 10, 2013
Discussion in Secondary amyloidosis (AA) · 1 reply
My husband has been on a weekly CyBorD regimen since December. His light chains are in the normal range, so his response has been excellent. We are trying to determine what to do for maintenance. One ...

revlimid side effects

By janis14 · New reply May 5, 2013
Discussion in Primary amyloidosis (AL) · 1 reply
I am considering getting revlimid after cytophosphemide has stopped lowering my proteins. Can anyone tell me about the side effects and how this treatment worked? I have just finished 6 months of cyto ...

Hereditary Factor in AL-Amyloidosis

By Leko2001 · New reply May 5, 2013
Discussion in Primary amyloidosis (AL) · 2 replies
Hello, My husband was diagnosed with what we believe is AL Amyloidosis on October 30th, 2012 after being mis-diagnosed the week before with Sarcoidosis of the Heart. 26 days later on November 24th, I ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

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Inspire connects patients, families, friends and caregivers for support and inspiration.