Inspire connects patients, families, friends and caregivers for support and inspiration... More about this group

Join today

Orthostatic hypotension

Vickibg
  • By Vickibg · Posted 3:01 pm
  • Discussion in Primary amyloidosis (AL) · 0 replies
  • Doug. my husband, was diagnosed in March of this year with primary amyloidosis. The major effect on him has been with his autonomic nervous system. His BP has been as low as 47/40 when standing. It has ...

Midodrine 10mg 3x daily

LearningintheDark1
  • By LearningintheDark1 · New reply May 14, 2012
  • Discussion in Primary amyloidosis (AL) · 3 replies
  • I have been taking Midodrine for my LOW BP, also sleeping with the head of the bed not lower than 30 degrees to avoid increased heart rate & risk of heart attack. Recently the Rx was changed from Walgreens ...

Fearing Kaiser will not allow a second opinion

mamma2sweetpea
  • By mamma2sweetpea · New reply May 11, 2012
  • Discussion in Primary amyloidosis (AL) · 4 replies
  • My mother who is 75 years young has just been diagnosed with amy AL at Kaiser Sunset. She was pretty much in good health until late last year. Both of my parents were visiting us when I noticed that my ...

Relapse Al Amy, con't

apr
  • By apr · New reply April 30, 2012
  • Discussion in Primary amyloidosis (AL) · 7 replies
  • This trip is for testing only, and I am sure Dr. Buadi will go over our options.....but that is almost a month away and we are curious as to what others have done as far as recent treatments ...

Side effects associated with velcade/dexmethasone infusions

040999
  • By 040999 · New reply April 23, 2012
  • Discussion in Primary amyloidosis (AL) · 3 replies
  • My husband began vecade and dexamethasone weekly infusions about three weeks ago. His primary organ of involvement is the kidney. If anyone has had this treatment and would not mind sharing their experiences ...

My Dad was recently diagnosed with AL Amyloidosis

keefe
  • By keefe · New reply April 19, 2012
  • Discussion in Primary amyloidosis (AL) · 4 replies
  • Hi, my 72 year old father was diagnosed with AL Amyloidosis in the middle of January (odd that he's been diagnosed with this rare disease - I was dianosed with a rare digestive illness, Gastroparesis ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

John2
  • By John2 · New reply April 15, 2012
  • Journal · 59 replies
  • Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

Amyloid Diet

LearningintheDark1
  • By LearningintheDark1 · New reply April 4, 2012
  • Discussion in Primary amyloidosis (AL) · 8 replies
  • Any one following a specific diet for AL? I came across eHow website entitled How to Reduce Amyloid Protein in the Diet (I hope this link works) http://www.ehow.com/how_7898683_reduce-a myloid-protein-diet.html ...

rezlimid amyloidosis

dianehelp
  • By dianehelp · New reply April 4, 2012
  • Discussion in Primary amyloidosis (AL) · 3 replies
  • My baby sister's husband 48 yrs old is starting rezlimid 4/4/12. Mayo Rochester MN. Velcaid w/chemo didn't go as well as hoped. Has anyone had success w/rezlimid ...

Sct; Caregiver

LearningintheDark1
  • By LearningintheDark1 · New reply March 28, 2012
  • Discussion in Primary amyloidosis (AL) · 12 replies
  • I've been reading about those with amyloidosis going in for sct & they have a caregiver or multiple caregivers during the time they are hospitalized/undergoing sct which usually lasts 8 weeks. What is ...

Newbie w Tracheobronchail Amyloid

JumpinBean
  • By JumpinBean · New reply March 27, 2012
  • Discussion in Treatment centers, health insurance and financial issues · 9 replies
  • I've just been diagnosed with amyloid in my lungs and have been referred to BU for further work up and treatment. It's been over a week since they received my referral but I have not heard back yet from ...

side effects from Velcade/Dexamethasone

zanne (Inactive)
  • By zanne (Inactive) · New reply March 23, 2012
  • Discussion in Primary amyloidosis (AL) · 17 replies
  • My husband, Jon, is being treated with a combination of Velcade and Dexamethasone. He started developing pain behind his knee in one leg about a month ago and now has pain eveywhere most of the time ...

Relapse of AL Amy

apr
  • By apr · New reply February 26, 2012
  • Discussion in Primary amyloidosis (AL) · 2 replies
  • My husband had a stem cell transplant at Mayo in Rochester in 3-2007. His initial involvement was multiple organs. However, since the transplant he has done ok. He was diagnosed with nephrotic syndrome ...

Familial Amyloidosis cardiac

Sunshineatl
  • By Sunshineatl · Posted February 24, 2012
  • Discussion in Familial (hereditary) and TTR amyloidosis · 0 replies
  • After having low pulse rate for several days and feeling very fatigued, I checked in with my primary doctor. He did an EKG and immediately called my cardiologist. Diagnosed with heart block 3. In hospital ...

The Inspire Q&A--Inspire talks with Susan Grant

John2
  • By John2 · New reply February 15, 2012
  • Journal · 31 replies
  • Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to helping patients and caregivers worldwide. We are posting these interviews ...

FDA Accepts Pfizer's New Drug Application for Tafamidis

GaPeach
  • By GaPeach · Posted February 15, 2012
  • Journal · 0 replies
  • Feb. 15, 2012, 8:00 a.m. EST FDA Accepts Pfizer's New Drug Application for Tafamidis Meglumine, a Novel, Investigational Treatment for Transthyretin Familial Amyloid Polyneuropathy (TTR-FAP) NEW YORK ...

TAFAMIDIS IN NORTH AMERICA-CANADA???

Joe42

Rashes

Joe42

Amyloidosis Support Meetings Coming Up!

Muriel
  • By Muriel · Posted January 31, 2012
  • Journal · 0 replies
  • FEBRUARY SAT. FEB. 4 – Tampa – Moffitt- Dr. Vivek Roy – Mayo/Jax and Kenneth Shain MD, PhD./Moffitt SAT.FEB.25- NYC – Mt. Sinai – Angela Dispenzieri- Mayo/Rochester SAT . FEB. 25 - SILVER SPRINGS – DC ...

Inspire is hiring!

Walter
  • By Walter · New reply January 20, 2012
  • Journal · 15 replies
  • Inspire is hiring, and we're wondering if you know someone who would be the perfect addition to our team. Hello everyone, I'm Walter, one of Inspire's founders and the head of our technical team. I'm ...

Continue reading >>

Sign in to see more

Don't have an Inspire account? Join now!

Forgot password?

Things you can do

Advertisement

Advertisement

Discussion topics

Group leaders

Inspire others

Together we're better - Inspire Amyloidosis Support Community

Support your group with badges for your e-mail, website, blog, and more ...

About this community

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

Read more about our work