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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.

Does Anyone Have Postural Hypotension?

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

I’m on midodrine for it but my bp goes pretty low when it’s time for the next dose. Anyone have the same problem and what do you do?

March 9, 2023
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A MyAmyloidosisTeam Member

MaryAnn… why the switch? Is there less side effects?

October 6, 2023
A MyAmyloidosisTeam Member

Anyone who has been on mididrine for postural hypotension been switched to Droxidopa? Apparently it is a new drug and is VERY expensive. Again, another costly drug that Medicare/insurance doesn't want to pay for. Doc appealed the denial and got it approved, but we have been waiting almost a month.

October 5, 2023
A MyAmyloidosisTeam Member

Interesting… I get a blood draw every other week. I think they would’ve seen something by now. I’ll mention it next time I see the dr. Thanks!

March 30, 2023
A MyAmyloidosisTeam Member

Yep! It especially happens if I have a bout of diarrhea. I was on 60 mg a day! We’re trying to wean me off of it. Right now I’m taking total of 40 mg. It’s way too high but I don’t want to rush it. I’ve passed out quite a bit. Lots of black eyes & split lips. Not very pretty. I was almost a goner a couple of times. That’s why I ended up in the hospital last year. Had a heart rate of 35. A third degree AV block. They had to put a pacemaker in. Sometimes when I go to the bathroom my blood pressure could go down as far as 74/49. I don’t know if I’ll ever be able to come off this medication. 😿

March 15, 2023 (edited)
A MyAmyloidosisTeam Member

Just 20mg per day. Do you experience light headedness/ dizziness after eating a meal? I just recently started experiencing this.

March 15, 2023 (edited)

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