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

Vineyard1

Senior Member
Messages
109
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!
 

Gingergrrl

Senior Member
Messages
16,171
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.
 

Thomas

Senior Member
Messages
325
Location
Canada
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!
 

Vineyard1

Senior Member
Messages
109
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!
 

Gingergrrl

Senior Member
Messages
16,171
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!

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

Shanti1

Administrator
Messages
3,174
Wondering if anyone else has experience with droxidopa (Northera) for orthostatic intolerance.

I'm currently using Strattera (atomoxetine) which is a norepinephrine reuptake inhibitor and it is allowing me to sit and walk around (along with compression stockings), but I was curious about experiences with droxidopa.
 

Shanti1

Administrator
Messages
3,174
I started droxidopa (Northera) a little over two weeks ago. Since I am so sensitive to meds, my doctor suggested I open the capsule and take only a little of the powder inside, working up until I found the dose that works for me. This medication has been a real win for me as long as I am careful not to under or over dose it. Typical dosing is 100mg tid and I take about 100mg spread through the day.

My symptoms when taking too much are anxiety, tightness in chest, insomnia, and a rapid heart beat. Taken in the right dose, it has a more natural feel for me than atomoxetine (Strattera), though not as mood elevating.

Between compression, droxidopa, and atomoxetine my blood pressure is around 105/75. Standing for long still induces symptoms, but I can manage sitting upright with feet elevated for the duration of the day without loss of cognitive function.

People who have adrenergic POTS, hypertension, tachycardia, or heart conditions may want to avoid these meds. I have orthostatic hypotension without tachycardia that takes between 5min-half hour of sitting or standing to manifest.

I think caution should be used in those with anxiety, but low catecholamines in certain brain regions may play a role in cognition, FM, pain syndromes, ADHD, depression, ME/CFS, and hypotension, so a trial starting low and slow could be worth doing.
 
Last edited:

Shanti1

Administrator
Messages
3,174
Mechanisms:
Atomoxetine (Strattera) is a norepinephrine reuptake inhibitor that crosses the blood brain barrier. Its main action is to increase norepinephrine within the synaptic cleft in noradrenergic synapses.

Droxidopa is a norepinephrine precursor that also crosses the BBB and is metabolized to norepinephrine by the enzyme aromatic L-amino acid decarboxylase (AAAD). Unlike atomoxetine, droxidopa has a more systemic effect "AAAD is ubiquitously expressed in tissues, including the kidney, gastrointestinal tract and liver. Strong evidence indicates that norepinephrine production after droxidopa administration occurs in non-neuronal tissues." (ref)

Additionally, "Droxidopa may convert into norepinephrine within sympathetic terminals and the newly synthesized norepinephrine is then released as a neurotransmitter upon neuronal activation." This is thought to prolong the effect of droxidopa as the presynaptic neuronal stores of norepinephrine are replenished. (ref)

This paper details the mechanism and pharmacokinetics of droxidopa: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4509799/#!po=12.3762


Differences between (as experienced by me)
I am using these primarily for blood pressure. Droxidopa was developed to treat neurogenic hypotension and it is FDA approved for that purpose. Atomoxetine is approved for treatment of ADHD and its use for hypotension would be off label.

My experience with droxidopa is that it gives me a more consistent, longer-lasting, and natural feel than atomoxetine (as long as I don't take too much). However, it is less mentally stimulating and mood elevating, so I will often use a very small amount of atomoxetine in the morning to help with focus and motivation, in addition to the droxidopa.

Atomoxetine
  • Quick onset and short acting
  • Have to dose frequently and feel I am going up and down. I think this might go away if I could tolerate a higher dose, such as 10mg at once. I have seen others comment that they could take 10mg once a day and they were good all day.
  • Greater impact on concentration, cognition, and mood, secondary impact on blood pressure
Droxidopa
  • Slower onset and effects last longer
  • Effect can be cumulative- after taking it for a few days, I needed less frequent dosing and amount (this may have to do with building norepinephrine reserves in the nerves). Has a more even, consistent effect
  • Greater impact on blood pressure, secondary impact on concentration and mood
  • More natural feel. At the right dose, I can practically feel 'normal'

Availability of Meds:
Atomoxetine is relatively inexpensive and available from alldaychemist and buypharma.
Droxidopa is available as a generic in Japan and can be purchased here: https://www.mimaki-family-japan.com/item/list?keyword_pc=droxidopa&x=0&y=0.

The Japanese version is a tablet that is sweet and literally dissolves in your mouth. I much prefer it to the US generic prescription in a capsule as it can be cut into pieces for dosing rather than parsing out capsule powder, but the US prescription is covered by my insurance, so that is what I am using.
 
Last edited:

judyinthesky

Senior Member
Messages
369
Mechanisms:
Atomoxetine (Strattera) is a norepinephrine reuptake inhibitor that crosses the blood brain barrier. Its main action is to increase norepinephrine within the synaptic cleft in noradrenergic synapses.

Droxidopa is a norepinephrine precursor that also crosses the BBB and is metabolized to norepinephrine by the enzyme aromatic L-amino acid decarboxylase (AAAD). Unlike atomoxetine, droxidopa has a more systemic effect "AAAD is ubiquitously expressed in tissues, including the kidney, gastrointestinal tract and liver. Strong evidence indicates that norepinephrine production after droxidopa administration occurs in non-neuronal tissues." (ref)

Additionally, "Droxidopa may convert into norepinephrine within sympathetic terminals and the newly synthesized norepinephrine is then released as a neurotransmitter upon neuronal activation." This is thought to prolong the effect of droxidopa as the presynaptic neuronal stores of norepinephrine are replenished. (ref)

This paper details the mechanism and pharmacokinetics of droxidopa: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4509799/#!po=12.3762


Differences between (as experienced by me)
I am using these primarily for blood pressure. Droxidopa was developed to treat neurogenic hypotension and it is FDA approved for that purpose. Atomoxetine is approved for treatment of ADHD and its use for hypotension would be off label.

My experience with droxidopa is that it gives me a more consistent, longer-lasting, and natural feel than atomoxetine (as long as I don't take too much). However, it is less mentally stimulating and mood elevating, so I will often use a very small amount of atomoxetine in the morning to help with focus and motivation, in addition to the droxidopa.

Atomoxetine
  • Quick onset and short acting
  • Have to dose frequently and feel I am going up and down. I think this might go away if I could tolerate a higher dose, such as 10mg at once. I have seen others comment that they could take 10mg once a day and they were good all day.
  • Greater impact on concentration, cognition, and mood, secondary impact on blood pressure
Droxidopa
  • Slower onset and effects last longer
  • Effect can be cumulative- after taking it for a few days, I needed less frequent dosing and amount (this may have to do with building norepinephrine reserves in the nerves). Has a more even, consistent effect
  • Greater impact on blood pressure, secondary impact on concentration and mood
  • More natural feel. At the right dose, I can practically feel 'normal'

Availability of Meds:
Atomoxetine is relatively inexpensive and available from alldaychemist and buypharma.
Droxidopa is available as a generic in Japan and can be purchased here: https://www.mimaki-family-japan.com/item/list?keyword_pc=droxidopa&x=0&y=0.

The Japanese version is a tablet that is sweet and literally dissolves in your mouth. I much prefer it to the US generic prescription in a capsule as it can be cut into pieces for dosing rather than parsing out capsule powder, but the US prescription is covered by my insurance, so that is what I am using.

Have you testen low on noradrenaline?

I have POTS but also lower to normal blood pressure, but I'm one of those that are too activated, then crash because of that
 

Shanti1

Administrator
Messages
3,174
Have you tested low on noradrenaline?

I have POTS but also lower to normal blood pressure, but I'm one of those that are too activated, then crash because of that

I have tested low on noradrenalin on two first-morning urine, whole-body neurotransmitter panels and my symptom picture is that of lack of sympathetic tone.

In POTS adrenaline/noradrenalin can be normal until the individual attempts to sit or stand, at that point, the drop in BP and poor venous return to the heart result in insufficient volume of blood being pumped out by the left ventricle and insufficient blood flow to the brain. This causes a surge in adrenaline/noradrenaline to increase the heart rate. I put a graph at the bottom of this post showing the change in adrenaline/noradrenaline in POTS lying to standing vs healthy controls.

When you tested your norepinephrine levels, was it before or after you developed POTS?
My 82 year old mom recently developed acute, severe anxiety after never having it before in her life. Oddly, when we tested her epinephrine and norepinephrine levels in urine, they came back low (this was about 4 months ago). I was planning on calling the lab about her results. I will let you know what I find out as it may be relevant to your case as well (mom is doing better now btw).

Anyhow, with regards to using norepinephrine enhancing medications in POTS, a recent study showed that atomoxetine (Strattera) made the POTS worse, you can view the study here:

https://forums.phoenixrising.me/threads/addressing-blood-pooling.88152/#post-2405716


Epinephrine lying vs Standing in Healthy Controls (HC) vs POTS
https://www.frontiersin.org/articles/10.3389/fphys.2022.879012/full
1660006479966.png

FIGURE 2. POTS patients have higher catecholamines in the standing position. Circulating norepinephrine in the (A) supine and (B) standing position and epinephrine in the (C) supine and (D) standing position. Data are presented as mean ± SEM. Statistical analyses were performed using Student’s t-test. N = 8 for POTS and N = 12 for healthy control participants and p < 0.05 was set for statistical significance.
 

judyinthesky

Senior Member
Messages
369
Hey @Shanti1

I always tested low, before or after POTS.
But I had a period when mild with more pacing when it was better.
For whatever reason it seems to be related to my weird form of mental PEM

I don't have low blood pressure on standing or any form of dizziness

I'm always wired
I strangely feel like too much sympathetic tone lol
 

Float

Senior Member
Messages
307
Location
Australasia
Mechanisms:
Atomoxetine (Strattera) is a norepinephrine reuptake inhibitor that crosses the blood brain barrier. Its main action is to increase norepinephrine within the synaptic cleft in noradrenergic synapses.

Droxidopa is a norepinephrine precursor that also crosses the BBB and is metabolized to norepinephrine by the enzyme aromatic L-amino acid decarboxylase (AAAD). Unlike atomoxetine, droxidopa has a more systemic effect "AAAD is ubiquitously expressed in tissues, including the kidney, gastrointestinal tract and liver. Strong evidence indicates that norepinephrine production after droxidopa administration occurs in non-neuronal tissues." (ref)

Additionally, "Droxidopa may convert into norepinephrine within sympathetic terminals and the newly synthesized norepinephrine is then released as a neurotransmitter upon neuronal activation." This is thought to prolong the effect of droxidopa as the presynaptic neuronal stores of norepinephrine are replenished. (ref)

This paper details the mechanism and pharmacokinetics of droxidopa: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4509799/#!po=12.3762


Differences between (as experienced by me)
I am using these primarily for blood pressure. Droxidopa was developed to treat neurogenic hypotension and it is FDA approved for that purpose. Atomoxetine is approved for treatment of ADHD and its use for hypotension would be off label.

My experience with droxidopa is that it gives me a more consistent, longer-lasting, and natural feel than atomoxetine (as long as I don't take too much). However, it is less mentally stimulating and mood elevating, so I will often use a very small amount of atomoxetine in the morning to help with focus and motivation, in addition to the droxidopa.

Atomoxetine
  • Quick onset and short acting
  • Have to dose frequently and feel I am going up and down. I think this might go away if I could tolerate a higher dose, such as 10mg at once. I have seen others comment that they could take 10mg once a day and they were good all day.
  • Greater impact on concentration, cognition, and mood, secondary impact on blood pressure
Droxidopa
  • Slower onset and effects last longer
  • Effect can be cumulative- after taking it for a few days, I needed less frequent dosing and amount (this may have to do with building norepinephrine reserves in the nerves). Has a more even, consistent effect
  • Greater impact on blood pressure, secondary impact on concentration and mood
  • More natural feel. At the right dose, I can practically feel 'normal'

Availability of Meds:
Atomoxetine is relatively inexpensive and available from alldaychemist and buypharma.
Droxidopa is available as a generic in Japan and can be purchased here: https://www.mimaki-family-japan.com/item/list?keyword_pc=droxidopa&x=0&y=0.

The Japanese version is a tablet that is sweet and literally dissolves in your mouth. I much prefer it to the US generic prescription in a capsule as it can be cut into pieces for dosing rather than parsing out capsule powder, but the US prescription is covered by my insurance, so that is what I am using.

Excellent info sharing. Thank you so much.