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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Featured Q&A

What’s Your Trick For Enjoying Holiday Treats And Staying On Track? 🎃

By A MyAmyloidosisTeam Member 16 answers

So How Do You Fight The Loneliness That Comes With Amyloidosis?

By A MyAmyloidosisTeam Member 31 answers

Have You Found Vyndamax To Help Or Shortness Of Breath Or Relieve It Altogether? Has Helped Me But I Still Get Winded Walking.

By A MyAmyloidosisTeam Member 21 answers

What’s Your Favorite Olympic Sport To Watch?

By A MyAmyloidosisTeam Member 22 answers
818 questions

Anybody Have Any Tips On How To Deal With Postural Orthostatic Hypotension.

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

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

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

June 10, 2023

Are There Doctors In The New York Area That Specialize In AA Type Amyloidosis?

A MyAmyloidosisTeam Member asked a question 💭
Nyack, NY

My brother is 85 years old and was diagnosed a few months ago. He has been told there is nothing to be done. He is unaware of any underlying illness that may have caused this.

A MyAmyloidosisTeam Member

Thanks Lola3. I’ll give him that info.

June 5, 2023

About Treatable Form Of Amyloid

A MyAmyloidosisTeam Member asked a question 💭
Rio Vista, CA

Is Cerebral Amyloid Angiopathy the same as one of the treatable forms of Amyloid discussed here?

A MyAmyloidosisTeam Member

Btw your kitty kat is very cute! I’m sure they provide a lot of comfort as does mine!

June 4, 2023

How Can A Drug Company Get Away With Unreasonable Price For A Drug, Get Away With It ?

A MyAmyloidosisTeam Member asked a question 💭
Florida, NY
A MyAmyloidosisTeam Member

Good response, Loise. My comment about buying stock was a 'tongue in cheek' comment. I have been investing for 66 years and have stayed away from Big Pharma due to their volatility and generally… read more

June 5, 2023

At Day 50 After A Stem Cell Transplant Is It Normal For My Body (mainly Limbs) To Feel Sore And Muscles Tight?

A MyAmyloidosisTeam Member asked a question 💭
BC Canada

It also feels like my shoulders and chest are tight. Sometimes I find myself saying it feels like I’ve been hit by a bus!

A MyAmyloidosisTeam Member

I have no answer as I have not had a stem cell transplant. Fingers crossed

October 18, 2023

Does Anyone Know The Status Of The Drug CAEL101 ?

A MyAmyloidosisTeam Member asked a question 💭
Baltimore, MD
A MyAmyloidosisTeam Member

Thank you Theresa! I also hope sooner!

October 6, 2023

Use ChatGPT With Great Caution But In This Case It Agrees With My Doctor's Warning Against Lifting Heave Weights.

A MyAmyloidosisTeam Member asked a question 💭
Brooklyn, NY

Instructions to ChatGPT: Act as if you were a cardiologist and i'm a 76 year old male patient with ATTR wild type cardiac amyloidosis. What exercise regimen would you advice? Should I life heavy weights?

Response ffrom ChatGPT:
As a cardiologist, I would advise you to approach exercise with caution due to your condition of ATTR wild-type cardiac amyloidosis. It is essential to prioritize your heart health and prevent any excessive strain or potential complications.

Given the nature of… read more

A MyAmyloidosisTeam Member

ChatGPT makes sense in this case.

June 11, 2023

No Real Question As All Under Control Here In Oz ..

A MyAmyloidosisTeam Member asked a question 💭
Brisbane, AU

But I have spent time at the gym today and feel a little tired and now my dear Lady wants me to shampoo 2 carpets . Why not .. never complain as there is always something just around the corner that is going to get ya ...🥰

A MyAmyloidosisTeam Member

Hey mate this Friday I see you have a gap with no treatments .. Name a time and i will plan my day around it .Anywhere any time ...

June 20, 2023

Does Anyone Know How To Clear Amyloid From Joints?

A MyAmyloidosisTeam Member asked a question 💭
Portola Valley, CA

My knees elbows are bent and can’t straighten. My fingers can no longer make a fist

A MyAmyloidosisTeam Member

Not that I know of.

June 3, 2023

Just Curious About Amvuttra ...

A MyAmyloidosisTeam Member asked a question 💭
Saint Louis, MO

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

A MyAmyloidosisTeam Member

Hi Maryann I receive amvuttra every three months just had my forth injection also have poly neuropathy which I take amitriptyline for the pain hope this helps 😀

October 22
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