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Is Tafamidis Working?
Seems to be working for me along with infusions of Patirisan every 3 weeks. Will be having an Echo and PCP test in January which will tell how I compare to 2021 and my heart. I have wild type. Jeffrey
Does Amyloids Spread From One Organ To Another?
Amyloid proteins fold and then divide into small pieces called fibrils which circulate in the blood stream and accumulate in the major organs.
Is Dexamethasone Taken Daily Or Only On The Day Of Chemo?
Jim had his appt with Dr, then first chemo. He told us about the drugs used, mentioned to take this med first thing in the morning. We weren’t given a prescription for it, so before I call on a weekend I was wondering if anyone could answer for us.
His dosage is 20 mg due to age, the amyloid is in his liver, kidneys & GI tract. His kidney function is ckd3b. He has Neurology appt next week. We thank God he has no heart involvement!
Have Others Had A Negative PYP Scan That Delayed Diagnosis?
My husband's PYP scan came back negative. Of course I'm thrilled but I can't believe we are not dealing with Amyloidosis. His symptoms mirror nearly all of the symptoms of this disease. In my research I've heard that a fat pad biopsy can provide a definitive diagnosis. Is that true?
Thank you for the advice. He has the fat pad biopsy scheduled for next week despite the specialist cardiologist poo-pooing the accuracy of the biopsy. In all of my research, I continue to see the fat… read more
Does Anyone Have Amyloid In There Bones?
My husband’s bone marrow biopsy showed amyloid in his bones. The Hematologist did not go into detail about it, it was his first treatment so I didn’t press the issue. My husband has a learning disability and it is hard for him to process a lot of information at once. I will address it on our next face to face after a few treatments. Just wondered what it means going forward. Thanks!
My husband just had a bone marrow biopsy on Monday. Still waiting on full results but we understand there was amyloid in his bone marrow. Also i’m his heart. We believe he has ATTR, but still waiting… read more
Anyone Taking Droxidopa For Low BP? Any Side Effects?
Another new and very expensive drug and difficult for us to get.... Had to go through the appeal process with Medicare and then when it was approved it has taken nearly 30 days to find a pharmacy in NoVA that has it. CVS Specialty Pharmacy seems to be the only place we can get it, hopefully this week...
Satish, it is for low BP/orthostatic hypotension and is Droxidopa. It is not specific for amyloidosis. Supposedly less toxic to the kidneys and more effective. Haven't started it yet.
Does Anyone Know The Status And Timeline For CAEL-101?
Thank you Theresa for this website!
UNABLE TO PRINT - Ongoing Problem - Need Pdf
Same frustration as unable to print using my iPad. Fix this.. we need to be able to share this with our medical team despite its simplicity. I use an IPad.
Can you select all the type and just copy it in word or your notes and just print from there?
Someone On This Site Said That Diflusinal Was Not Avail. It Is,dolobid Is Not ,they Are The Same
I am presently taking diflunisal 250 mg (500) cut in half 1 per day ATTRWT
Shortness Of Breath And Rapid Heartbeat At Bedtime
My husband is experiencing SOB and rapid heartbeat when he lies down. Not every night but often enough. He can't sleep when it happens. And it goes away as soon as he sits up. He's worn a heart monitor. The doctors are unconcerned but it is impacting his life in a very negative way. Does anyone have this and if so, what do you do about it? He cannot sleep sitting up. Please do not send hugs or reply if you do not actually have any information.
Thank you for that info. We are about ready to try anything!
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