10 tips for reducing your medical expenses and amyloidosis | MyAmyloidosisTeam

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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

How Soon Does Aml.travel To Other Parts From The Heart ..
A MyAmyloidosisTeam Member asked a question 💭

I'
Ive had Amy in my heart fir over 6months
&feel it's now in lower parts..Dorothy

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A MyAmyloidosisTeam Member

My husband has peripheral yneuropathy and has had carpal tunnel, waiting to hav neurology consult confirm R/t amyloidosis, if so he had this for sometime before we knee it was affecting his heart too

Darzalex
A MyAmyloidosisTeam Member asked a question 💭

Is this medication covered by medicare? How about by medical covetage. I need to know about how costly out of pocket costs may be.

A MyAmyloidosisTeam Member

Depends on what you have in addition to to Medicare. Like some I have BCBS Advantage and they pretty much paid for the treatments until I entered the donut hole and then we received bills in the… read more

Anybody Have Any Tips On How To Deal With Postural Orthostatic Hypotension.
A MyAmyloidosisTeam Member asked a question 💭

I’ve tried the sitting on the edge of the bed and waiting or waiting when I stand up from sitting. I’ve lowered my midodrine to 10 15 and 10. I really don’t want to increase it again. My cardiologist is actually trying to get me off of it. I was on 60 mg a day we’re trying to taper it down. I was doing well but now my bp is running low again

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A MyAmyloidosisTeam Member

My husband has struggled horribly with postural hypotension they tried a few drugs but because is caused by neurological vs cardiac he’s off the meds as they did nothing
He just sits up slowly, sits… read more

Is It Normal For People With Amyloid To Need 10/12hrs Sleep. Dx
A MyAmyloidosisTeam Member asked a question 💭
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A MyAmyloidosisTeam Member

Best wishes to &your pet.dx😄😄😄

I’m New To This, Got Diagnosed In January Of This Year. Would Like To Develop A Good Exercise Program That Works With My AL Amyloidosis.
A MyAmyloidosisTeam Member asked a question 💭
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A MyAmyloidosisTeam Member

You’ll get good exercise tips on here. It all depends on what your doctors say and your tolerance level. Walking is pretty good for me and sometimes dancing 😊

Hi Dan From Calgary Asking After Taking 10 Mg Of Dex 2 Hours Before Treatment Increases Your Blood Pressure As Mine Seems To Go Up
A MyAmyloidosisTeam Member asked a question 💭
Anyone Not Medicare Eligible Dealing With Pfizer Changing Their Co-pay Assistance Without Notice? (57 Years Old, Wild Type ATTR)
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

A lot of pharmaucetical companies are reducing their income allowables. Pfizer didn't go down as much.Jeffrey

Hello I Have A Sct Coming Up In April.
A MyAmyloidosisTeam Member asked a question 💭

Hubby will be caregiver. Any helpful tips? Hubby doesn’t do housekeeper thing. We will be staying close to the H as I will be an outpatient also considered a low threshold patient . We will get a place with a kitchenette for sure . I’ll bring frozen low salt soups from home. Does anyone that has gone through this have any suggestions or helpful tips? Thank you 😊

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A MyAmyloidosisTeam Member

I had SCT in March 2022. The best advice I can give you is, take it one day at a time, particularly after your mega-dose of chemo. You should expect a few rough days, but you’ll get through it… read more

Does Anyone Have A Suggestion For The Best Place To Go For Diagnosis Of Rare Diseases. I Am Willing To Travel.
A MyAmyloidosisTeam Member asked a question 💭

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.

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A MyAmyloidosisTeam Member

Yes I agree Mayo . There is help out there. Please don’t feel hopeless!