Questions & Answers

What are usual side effects of Onpattro infusions and preinfusion drugs?

I did volunteering at a cat rescue for a long time and I can’t tell you how heartbreaking it is when a pet ends up in a shelter scared and alone because plans weren’t put into place for them. Please don’t assume that someone will take care of them if you can’t. Please put a plan into place. I have and now I have piece of mind. They’re my babies ❤️

I have amyloid in my GI tract. At the beginning of this mess I lost 50 lbs. can’t seem to put any of it back on due to chronic diarrhea. I’m 102 lbs. any kind of smoothie or ensure product doesn’t work. It only makes the diarrhea worse 😿

I am a former Marine that spent about 1 year at Camp LeJuene and I am constantly bombarded by ads (and phone calls) regarding the exposure to toxins at the base. Interesting that there are many illnesses listed but NOT Amyloidosis. Most notably Multiple Myoloma, a "direct cousin" as well as other blood & marrow disorders. Why is this?

Most frequent symptom is Carpel Tunnel and almost constant pins & needles sensation and overall "blah" feeling accompanied with lethargy. Understand that these are general symptoms related to other diseases but since previous out of range Kappa Light chains and Ratio where present on first testing and remaining Kappa mildly out of range while Ratio normal in 2nd round of testing suspicion of PCP remains Amyloidosis. Just a list of test would be helpful in the meeting next week with PCP

I'm in and out of having to rest all day

I received the Covid vaccine in January & February of 2021 and by March I had all these weird symptoms. By January of 2022 I was diagnosed with AL

I have been going to Kaiser here in WA for 7 years. I am getting sicker by the day. They think well inside the box. I can't do this any longer. I am 75 and have no life, no meds, and no hope at this point. Please help.