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That sounds very good, Ann. I hope your progress continues.
Hi. I had a numbness feeling in my left arm and hand for a few weeks about 6 months ago. It disappeared so I didn’t think too much about it. It’s back again now for a few weeks and I sometime get slights pins and needles in the tips of my fingers. Could this be a symptom of neuropathy? Could it be there for a few weeks, disappear and then come back again? I have hATTR cardiac Amyloidosis and am in Vyndaquel for 8 months now. Thank you.
calf and hamstring muscles severe pain when standing or trying to walk
after JUDY AMYLOIDOSIS
Does anyone that is on Vyndamax have the support of Pfizer's patient help plan for help in handling the costs of the medicine? I was approved by Medicare and Tricare but the co-pay is still outrageous and unattainable ($2860 for 30pill/30days.)
Thank you, Joel. I was approved by Pfizer's Patient Support Program and am now taking the Vyndamax.
I am as well. Using the cardiac biomarkers I’m stage 1 ATTR amyodosis wt. Been on Tafmidis 61 MG since 10/2023. Little or no buildup of plaques since then but continued Afib, neuropathy and fatigue.
General Feedback for improvement in Medical Management by Hospitals for the Patients of AL Amyloidosis and Cardiac one in Particular: ( Draft as on 30/08/2023)
In order to address the issues and concerns regarding the management of Cardiac AL Amyloidosis, it is important to initiate a debriefing session with the medical team involved in the patient's care. Even the explanations offered on the pathways of treatment as Immunotherapy + Chemotherapy as against BMT are vague ,unclear, and scary with… read more
Mr. Joel - I am following your advices that are very meaningful. I was looking for AL Amyloidosis, Cardiac Specialist ,who may contact through Teleconsultancy
I was curious to get the Q & A Bank… read more
I am suffering from primary Amyloidisis affected on kideny filtration so creatine increased to @8
Eric, I was diagnosed in July 2019 with wild type amyloidosis. This fall will mark my five-year usage of Vyndamax. I am certainly grateful to Pfizer for this excellent drug. I have also been on a… read more
I have been going to Kaiser here in WA for 7 years. I am getting sicker by the day. They think well inside the box. I can't do this any longer. I am 75 and have no life, no meds, and no hope at this point. Please help.
Linda hasn’t been on here since May 2023 😿
You should see a gastroenterologist. Maybe an endoscopy & colonoscopy and have them specifically biopsy for amyloidosis. If they don’t test for that specifically they’ll miss it. Visually everything… read more
