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I am about to start Droxidopa...does anyone have any words of wisdom regarding this med?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Vineyard1, Jan 28, 2016.

  1. Vineyard1

    Vineyard1

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    I saw Dr. Black at the Hunter Hopkins Center and miserably failed the Tilt Table Test. I have always had low BP (systolic under 100) and a systolic BP in the 80's with infections....but never had tachycardia. Over the past several months my heart rate is in the 120's with the simplest of things, eating a meal, taking a barely warm bath etc. I just received Droxidopa in the mail and read all the literature but wanted to hear any considerations from folks who have taken it. Thanks!
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    I did not actually ever start Droxidopa (Northera) but I came close before realizing it would have been a dangerous medication for me. I do not know if this will apply to you but will share just in case. In the post marketing research in Japan on Droxidopa, many patients ended up getting NMS, akathisia, etc, and since I had gotten akathisia from prior meds, I felt the risk was too great for me. Droxidopa also contains four food dyes which I cannot take with MCAS and it is only made by one specialty pharmacy and cannot be compounded.

    So for both of those reasons, I had to cancel my order even though I was approved to receive it for free under their financial aid program. I do well on Midodrine which contains no food dyes and does not have akathesia as a side effect so I ended up sticking with that. The two meds are similar in many ways but have very different side effect profiles. My cardio felt Droxidopa was so dangerous that patients had to take the first dose at his office and stay for several hours to make sure they were okay.

    I have had such horrific reactions to benign meds and supplements that I couldn't risk it. But I know some people have done well with it. Would love to hear how you do on it if you decide to try it.
     
  3. Thomas

    Thomas Senior Member

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    No I haven't taken it, but it's on my list so I'd be curious how it works for you and if you'll also let us know!
     
  4. Vineyard1

    Vineyard1

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    Thank you for your input...I will let you know how it goes with this med...hoping for the best!
     
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  5. Vineyard1

    Vineyard1

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    So...Droxidopa was a bust. I started to titrate it up to 2 pills three times a day and developed chest pain, arm pain and pain between shoulder blades. I thought it prudent to stop before I ended up in the ER....on to the next med!
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for the update on Droxidopa but sorry you had to go through this experience.
     

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