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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.
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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

posted 8 hours ago
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A MyAmyloidosisTeam Member

Sigh… prayers to you both 🙏❤️

posted 2 hours ago
Are There Doctors In The New York Area That Specialize In AA Type Amyloidosis?
A MyAmyloidosisTeam Member asked a question 💭

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.

posted 1 day ago
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A MyAmyloidosisTeam Member

Thanks Lola3. I’ll give him that info.

posted 8 hours ago
About Treatable Form Of Amyloid
A MyAmyloidosisTeam Member asked a question 💭

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

posted 2 days ago
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A MyAmyloidosisTeam Member

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

posted 1 day ago
How Can A Drug Company Get Away With Unreasonable Price For A Drug, Get Away With It ?
A MyAmyloidosisTeam Member asked a question 💭
posted 2 days ago
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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

posted 14 hours ago
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 💭

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!

posted 2 days ago
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A MyAmyloidosisTeam Member

Hello Janice
Sorry to hear of your muscle discomfort, I hope it subsides. I am now 1 yr past my SCT, I do suffer from attacks of severe muscle & tendon spasms/seizures, (as opposed to chronic muscle… read more

posted 2 days ago
Does Anyone Know The Status Of The Drug CAEL101 ?
A MyAmyloidosisTeam Member asked a question 💭
posted 2 days ago
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A MyAmyloidosisTeam Member

Thanks theresa.!
I agree hopefully sooner.
Thans for the info
Vince

posted 2 days ago
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 💭

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

posted May 29
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No Real Question As All Under Control Here In Oz ..
A MyAmyloidosisTeam Member asked a question 💭

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 ...🥰

posted May 26
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A MyAmyloidosisTeam Member

Oh Len all you need is Heart Kidney, Bladder, Gastro Intestinal Tract and Nerves involvement. And wherever else this stuff congregates
The kidneys showing improvement so is hopefully the heart but not… read more

posted May 27
Does Anyone Know How To Clear Amyloid From Joints?
A MyAmyloidosisTeam Member asked a question 💭

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

posted May 26
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A MyAmyloidosisTeam Member

Not that I know of.

posted 3 days ago
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?

posted May 22
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A MyAmyloidosisTeam Member

My husband has had no copay with Amvuttra .Analym Assist has covered the cost

posted 6 days ago
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