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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)Comment receiving replies
Hi Old Karl @oldkarl -- I thought about you when I received an email update from the Foundation for Peripheral Neuropathy and read the following info in one of the headings:
"On August 10, the FDA said it had approved patisiran (Onpattro) to treat polyneuropathy associated with hereditary transthyretin (hATTR) amyloidosis, caused by a gene mutation that leads to amyloid deposits in nerves and tissues.
In the phase III APOLLO trial, patisiran slowed peripheral neuropathy progression in patients with hATTR amyloidosis, improving neurological impairment and clinical manifestation by over 18 months."
The email had the following link to more info:
Patisiran Wins Two Firsts With FDA Approval -- RNAi drug OK'd to treat polyneuropathy from hereditary transthyretin amyloidosis
-- https://www.medpagetoday.com/neurology/generalneurology/74525?utm_source=E-News+-+September+2018&utm_campaign=E-News+-+September+2018&utm_medium=email
John
Replies to "Hi Old Karl @oldkarl -- I thought about you when I received an email update from..."
@johnbishop Thank you, John, for that interesting/scary article. Scary because I know I have another genetic glitch that originates in my liver.
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@johnbishop Thanks for the thought, John. I am quite familiar with patisiran, but rather skittish at the moment. mayo says I have no TTR in my Amyloidosis. Patisiran apparently does not work, as yet, for non-TTR. I suspect it may be improved in the future. Right now I could try it, but I would have to pay for it all myself. At $450,000 per month, that is a little more than I can stomach. Alnylam and I have been talking about it for several months. I think it is a great product.