Onpattro and amyloidosis | MyAmyloidosisTeam

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Top 10 Search Results for "Onpattro"

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Just Curious About Amvuttra ...
A MyAmyloidosisTeam Member asked a question 💭

Just curious ... Is Amvuttra (Vutrisiran) the same as OnPattro (Patisiran) or in the same category?

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A MyAmyloidosisTeam Member

It is the same as onpattron. I will tell you my opinion on this drug . My dad has received two injections of this drug and he hasn't been the same man . He has had an adverse reaction extreme pain in… read more

Taking Vydamax With Onpattro
A MyAmyloidosisTeam Member asked a question 💭

My insurance has denied coverage for treatment with Vydamax since I’m currently taking Onpattto. They state the two should not be combined. Has anyone found this ?

A MyAmyloidosisTeam Member

Michael, my doctor told me that Vydamax was the only thing he would prescribe to me.

Onpattro Vs Amvuttra
A MyAmyloidosisTeam Member asked a question 💭

After being on Onpattro for 6 months (with great improvement) I was switched to Amvuttra. I received the first shot in December 2022 and scheduled for next one on March 22, 2023. I have noticed a huge decline similar to my pre Onpattro
days. I think I should switch back to Onpattro and will discuss with my doctor on Thursday....6 days before next shot. Can I get feedback? Anyone relate?

A MyAmyloidosisTeam Member

will tell you my opinion on this drug . My dad has received two injections of this drug and he hasn't been the same man . He has had an adverse reaction extreme pain in joints arm , knee , foot . He… read more

Symptoms Amyloid Peripheral Neuropathy
A MyAmyloidosisTeam Member asked a question 💭

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.

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A MyAmyloidosisTeam Member

I too am taking Gabapentin daily and Onpattro infusion treatment to treat peripheral and autonomic neuropathy.

I experience numbness in my feet, legs, hands and arms I’ve had many nerve tests in… read more

Does Onpattro Help Wild Type Amyloidosis?
A MyAmyloidosisTeam Member asked a question 💭

Is Onpattro treatment for wild type Amyloidosis?

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A MyAmyloidosisTeam Member

Paula, that's the way it works for me. Since I've been back on straight Medicare and CHAMP/VA (Tricare) everything has been working fine with OnPattro.

Is Anyone Using Partisiran, Inotersen Or Vutrisiran With Vyndamax In Treatment For CATTR-CM. Same As HATTR. Success? Cost?
A MyAmyloidosisTeam Member asked a question 💭

After 3 years being diagnosed with ATTR-CM I am on the same basic treatment with few symptoms. BUT, my Cardiologist has no experience with Amylodosis and I cannot help thinking we should at least compare to the original diagnosis and maybe need to concentrate on gene silencers.

A MyAmyloidosisTeam Member

Hi Roy
I've been on Vyndamax since June. This treatment is expected to slow the progress of ATTR-CM. In November I started Onpattro and already feel improvement in Capital tunnel, trigger finger,… read more

How Harsh Are Reactions Or Side Effects Of Onpattro Infusions
A MyAmyloidosisTeam Member asked a question 💭

What are usual side effects of Onpattro infusions and preinfusion drugs?

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A MyAmyloidosisTeam Member

I am starting Patisiran (Onpattro) infusions in May.

Is Anyone On Patisiran That Could Share Thoughts On How They Are Doing? I Have Wild Type..Jeffrey
A MyAmyloidosisTeam Member asked a question 💭
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A MyAmyloidosisTeam Member

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… read more

I Have WtTTR. What Experience Is Everyone Having With Neuropathy? How Do You Find Relief If You Do?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I started taking over the counter Turmeric with black pepper extract. Seems to help

Costs Associated With Amyloidosis Treatments
A MyAmyloidosisTeam Member asked a question 💭

What are the most expensive meds/treatments for Amyloidosis?

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A MyAmyloidosisTeam Member

Excellent. Glad that you were able to get some assistance.