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My Partner Throws Up When Doing Physical Therapy. Is This From The Medication Or Just From Being Weak From The Disease?
How To Handle Cardiomyopathy & Hypotension Due To AL Amyloidosis, Cardiac.
To review the Amyloidosis the PET Scan and MRI are done. PET Scan finding FDG avid nodular air space opacity with surrounding ground glassing in the right lung lower lobes with enlarged Mediastinal… read more
Does Anybody Use Difusinal?
I Am On DIFLUSINAL I Don't Read About Anyone Here That Speaks Of It . 6 Months Ago It Was Not In My Heart Yet
Diflunisal can be used in patients that are not yet symptomatic for ATTRv amyloidosis. It helps to knock down the circulating TTR protein that causes the amyloid to build up. Lowering the protein… read more
Tafamidis Treatment, Good, Bad, Side Effects?
Anyone on tafamidis, either Vyndaqel or Vyndamax? How is the treatment going, any improvement, side effects, ect.
How to pay for it?
Need help, any info would be much appreciated.
Thank you
Hi further to my reply of 6 months ago. I was diagnosed early as I said. In Dec 2023 I had another round of tests and an echocardiogram. I have taken Vyndamax since 5 May 2023. The results of my… read more
What Is The Most Common Way To Die From End Stage Amioloydosis?
I am in final stage of amyloidosis...detected via MRI over a year ago when I was being scanned for Cardiac Heart failure . I am in hospice care with a consistent daily pulse rate of 30 bpm. It was over 90 bpm mid August and suddenly dropped to a 36-38 heart rate within 2 days. It descended to a consistent 32 pulse rate (bpm) in mid September. Since October 1st the heart rate is mostly 30-31 and a couple 29s have been recorded! I have increasing heart pains but I can walk short distances in my… read more
Keep baffling them sir, only God knows the answer.
Dexamethasone Schedule
Does anyone else take Dexamethasone more than just the day of chemotherapy? Trying to understand why my partner is having to start off taking it four days on and four days off for 4 to 6 months? That seems like a lot to me. I wanted to check in with you all before presenting the question to our hematologist next week. I appreciate any information you can give!
We were able to speak with the doctor and he placed her on a treatment plan where she takes 40mgs the day of treatment, which is great because it raises her blood sugar and causes concerns, and she… read more
One Year Later?
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.
Compressed Vertebrae Fractures? Help!
I was diagnosed with AL Amyloidosis and SM in October 2021 and it was by the grace of God that it was found so early. I was not experiencing any symptoms and it was an ER visit for an extremely bad stomach bug and cramps that prompted lots of blood work in July 2021. My first treatment was 12/27/21 and on 1/7/22 I experienced my first of FIVE vertebrae fractures. It was a domino effect. I have had four Kyphoplasty procedures over the course of 6 months which were extremely helpful for the… read more
Ugh! I’m so sorry for all this you’re going through. I don’t have any bone issues so I can’t speak to this but I’ll keep you in my prayers. 😿
Someone Asks What Is Amyloidosis, What Is My Answer?
Sigh…
I just say a rare disease that has abnormal proteins infiltrating my organs 😡 lucky us
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