Mary Ann.so sorry to hear of the drugs not helping your husband. If the infusion on Patisiran is not "silencing" progression of the disease I am not excited to drive to Columbus Ohio every 3 weeks and be there for 5 hours and drive back.I have been told it would hold the disease where it is until new drugs (Prx004-Nova Nordisk) or one like it can possibly reverse even the damage the amloids have caused.Pray things improve for your husband.Thanks for the reply to my question.Jeffrey

The drug( Patisiran) is in Phase 2 trials and is a "silencer" which stops the amloids out of the liver

Mary Ann. I pray things improve for your husband. I keep thinking we all have different DNA and genes so these drugs may affect us differently. I am going to quiz the Dr.s in my Patirisan infusion on just what it is supposed to be doing on neuropathy. My worry is also the heart though and I think our only hope there is something new to stop completely the thickening or even reverse it..Jeffrey

Jeffrey, my husband is now up to Infusion #11. He talked to the amy specialist this week who felt that the Onpattro is "holding" his cardiac status per the numbers, and is mostly being used to decrease the neuropathic pain, which it is. He continues to lose weight and strength, now being able to walk only 10 feet or so before severe SOB. The imbalance worsens daily. The dr. talked about switching to Amvutra, but due to the limited success my husband has experienced on the Onpattro and no firm conclusive data on Amvutra for cardiac symptoms, as well as the hassles with insurance, recommended that he stay on Onpattro infusions and Vyndamax orally. So we hope that that combination keeps him in a holding pattern for a few more months.

My husband has had 7 infusions of Onpattro which is the trade name for Patisaran, I think. He is also on Vyndamax which is a daily oral med that was supposed to help the cardiac decline. I don't think either has done very much for him, except maybe a decrease in the neuropathic pain which was the reason for the Onpattro. He is now in Stage 4 heart failure. He has lost 30 pounds since September and close to 80 pounds in the previous year (He is/was a big guy!) These drugs are VERY expensive.