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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
watch that your BP doesn't go too low if it does take hydrocortisone see Endocrinology amyloidosis specialist. Do your ankles swell feet etc do your retain fluid ? Do you take Lasix water pill. Whaya… read more
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.
Sean I’m sorry you’re not getting what you need from this site. I might have to agree to disagree on some of your points. I wish you the best on this journey we’re all on.
Yes, I think we all have heart failure and neuropathy with all of the other side effects, I have been treating it with the drugs suggested by my Columbia team and also with strength training, fasting… read more
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
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.
Yes I agree Mayo . There is help out there. Please don’t feel hopeless!
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
