Quick Links
About MyAmyloidosisTeam
Powered By
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
Call you cardiologist and get him to help you with the application for meds.
Eat and drink healthily, and exercise to the extent you are able.
There appears to be a developing school off thought to keep moving, stay active to help slows down buildup of fibrils.
I’m here for the long haul as well! I’m not letting this beat me. I have too much to live for. I’m glad to hear that your BNP got better. That’s what I’m hoping for. Even though the cardiologist says… read more
Bidy pains plus amyloidosis in bladder combine to get me up at keast three times between going to bed at 10 and getting upbfor good at 4 when my dog insists that I get up for good
Thank God for my… read more
I received this information on ni006, which shows signs of removing Attr amyloid from the system. Phase I was completed earlier this year.
“The drug is moving directly to Phase 3 studies
A phase 3 trial will begin by the end of the year/beginning 2024. The company who has acquired the drug and is running the phase 3 is Alexion.
Enrollment for the Phase 3 trial will be worldwide including the US. I recommend to contact alexion US or a local specialist in cardiac amyloidosis to identify a… read more
i am not eligible because o have sclerosis of the liver
I have AL Amyloidosis
I completed 6 months of weekly CYBORD+D plus 6 months bi-monthly CYBORD+D treatments-last treatment was July 2023
I reached CHR and now 3 months later my lambda light chain numbers are barely creeping up.
It is 27.
I just started today on Darzalex Faspro once monthly. My doctor is talking about starting the WHOLE treatment process again in January. The CYBORD+D. Just wondering, is this usual? I just don’t think I can handle another 6 months of treatment. I was sick all… read more
Have you gotten a second opinion (go outside your current treating doctor’s network). By law you are allowed a 2nd option.
I have HATTR Amyloid resulting in my having Cardiac Amyloidosis and Peripheral Neuropathy. I am taking Vyndamax and soon to start Amvuttra (spelling) could these be the cause of my weight loss.
My wt goes up and down like a thermometer ... I went from 194 to currently 154 and I am 5'6 I don't have to exercise..I have no appetite at all but like I said I have reported this and my friends and… read more
I am experiencing daily bouts of nausea, vomiting, diarrhea and extreme drops in blood pressure. For the past 2 months now. I am currently in CHR and have been done with chemo for one month. Didn’t have any of these issues while on treatments. Any thoughts or similar issues out there? I’m just wondering if it’s the Amyloidosis or a result of nerve damage from the chemo? I’ve had bacterial and parasite tests done but no evidence of either. Also had a recent echocardiogram which was normal. No-one… read more
How about a cardiac MRI?
Continue with Facebook
Sign up with your email
Your privacy is our priority. By continuing, you accept our
Terms of use, and our
Health Data and
Privacy policies.
