Quick Links
About MyAmyloidosisTeam
Powered By
Just curious ... Is Amvuttra (Vutrisiran) the same as OnPattro (Patisiran) or in the same category?
It is the same as onpattron. I will tell you my opinion on this drug . My dad has received two injections of this drug and he hasn't been the same man . He has had an adverse reaction extreme pain in… read more
I'
Ive had Amy in my heart fir over 6months
&feel it's now in lower parts..Dorothy
My husband has peripheral yneuropathy and has had carpal tunnel, waiting to hav neurology consult confirm R/t amyloidosis, if so he had this for sometime before we knee it was affecting his heart too
Is this medication covered by medicare? How about by medical covetage. I need to know about how costly out of pocket costs may be.
Depends on what you have in addition to to Medicare. Like some I have BCBS Advantage and they pretty much paid for the treatments until I entered the donut hole and then we received bills in the… read more
I’ve tried the sitting on the edge of the bed and waiting or waiting when I stand up from sitting. I’ve lowered my midodrine to 10 15 and 10. I really don’t want to increase it again. My cardiologist is actually trying to get me off of it. I was on 60 mg a day we’re trying to taper it down. I was doing well but now my bp is running low again
My husband has struggled horribly with postural hypotension they tried a few drugs but because is caused by neurological vs cardiac he’s off the meds as they did nothing
He just sits up slowly, sits… read more
You’ll get good exercise tips on here. It all depends on what your doctors say and your tolerance level. Walking is pretty good for me and sometimes dancing 😊
A lot of pharmaucetical companies are reducing their income allowables. Pfizer didn't go down as much.Jeffrey
Hubby will be caregiver. Any helpful tips? Hubby doesn’t do housekeeper thing. We will be staying close to the H as I will be an outpatient also considered a low threshold patient . We will get a place with a kitchenette for sure . I’ll bring frozen low salt soups from home. Does anyone that has gone through this have any suggestions or helpful tips? Thank you 😊
I had SCT in March 2022. The best advice I can give you is, take it one day at a time, particularly after your mega-dose of chemo. You should expect a few rough days, but you’ll get through it… read more
Hi, I have been on Vyndamax for almost 5 years. I have never lost my sense of taste. Just thought I’d add that.
I live in Berlin, GERMANY. Do you have an address of a medical centre, specialist, or help group I can contact?
Hopkins in Baltimore also has an exceptional group of amyloid dr’s. They are now starting an amyloid only dept in the hospital. Now we will not all have to fight over the same dr as there will be… read more
Hi Jen
Meant to get back to you yesterday. I apologize for the delay.
I did 3 Cycles of CyBorD.
4 cycles of Dara, Velcade and Dex
8 cycles Carfilzomib, Revelimid and Dex
