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I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
I have an enlarged liver (19cm) and protein in my urine but not showing up in my blood My basic blood work is otherwise normal. I am waiting for my provider to confirm the diagnosis.One year ago I lost 1olbs weight and I have neuropathy in my toes but no other obvious symptoms. Does this sound like early stage amyloidosis?
Additional thought to earlier post: With hindsight I can specify when to the week I became infected with AL almyloidisis. In late Sept 2020 my VO2Max started a long dive . VO2Max is available from… read more
calf and hamstring muscles severe pain when standing or trying to walk
thanks for your comments Judi how are you doin? What kind of amyloidosis do you have do you take Vydamax? Do you have any skin issues from amyloidosis.Is the medicine called Requip?RX did you get it… read more
I take Jardiance and Vyndamax. My cardiologist says it might help ejection fraction.
What are the most expensive meds/treatments for Amyloidosis?
Excellent. Glad that you were able to get some assistance.
My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?
I had a stroke in Cerebellum that I thought was cause of balance issues ( don’t know when), but I think it may be related. Had gotten worse lately. I have CM ATTR so it may have triggered the stroke.
I think the only way to really understand how much Tafamidis works is by comparing the heath thickness before and after, at least 1 year of therapy. Has anyone got this information?
Sheldon, is the Acoramidis also manufactured by the same company as Tafamidis and Patisiran?
I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.
You should stay on meds. It helped my brother a lot. He got a heart transplant las November after thanksgiving and he is doing so good now. I hope I get a prescription soon.
I am Millard Collins. I have AL Amyloidosis. At the first part of October 2022 I started taking the usual chemo treatments with Cyclophosphomide, Bortezomib, Daratumumab and Dexamethasone. Starting out my lamba light chains was 92 after 4 1/2 cycles (17 treatments) they only went down to 75 dropping down to 65 once then up to 85 then back down to 75. My SGGT spiked to 276. So we stopped the chemo treatments two weeks ago. I see my oncologist in two days to see what different route we are going… read more
I am being treated with Daratumumab + Dexamethasone every 3 months. It is one of the gold standards for treatment for Amyloidosis. I tend to shy away from any unconventional treatment. If your friend… read more
Hello. I am from Vietnam. In VietNam we can not receive any information about Amyloidosis. It is really new here
- This disease was first reported in my grandmother. Then my grandmother gave birth to 8 children. 7 out of 8 people get sick. 3 of them died, including my father
- Recorded symptoms include: enlarged heart, leg edema, persistent diarrhea. Doctors could not say exactly where the disease came from. Because almost every things has problems. But the heart is the biggest problem.… read more
You’re not able to get chemo in Vietnam?
