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Droxidopa Trials


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Guest tearose

I am not pleased with the "dopa" drug turn of treatment just because these are used in cases of neurological degeneration and it concerns me that some of those with dysautonomia really do have degeneration...it is just one of those areas that remind me of decline.

Drugs used to treat PD wound up worsening my dad and he went further into decline.

I wish drugs did not have such variable effects in people. They can help and they can hurt.

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At this point, I just try and stay away from just about everything, so few things have helped and so many made me worse. If I just had one thing, it might work better, but as my doctor explains, you take a med that helps the thing it's meant to but makes the other things wrong with you worse.

When I reach a point where I am even somewhat functional, I just never want to rock the boat, it just seems to throw everything off and takes me forever to get back to baseline, if I even do, which I don't anymore. I broke those bones back in September and I am still waiting to get over it. Gees.....morgan

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I'm not, but in the information I've seen (mainly for European and US trials) they were looking for patients with MSA or PAF. There is mention of syncope, but only in the context of having these disorders.

It looks very promising to me. I would certainly try it if I could!

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I am not pleased with the "dopa" drug turn of treatment

This drug is primarily a norepinephrine precursor and a vasoconstrictor like midodrine but with a smaller side effect profile. Its not one of the medications that relate to Parkinsons.

It is being avoided in POTS because some doctors believe excess NE is a problem for POTS patients.

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  • 2 months later...
I am not pleased with the "dopa" drug turn of treatment

This drug is primarily a norepinephrine precursor and a vasoconstrictor like midodrine but with a smaller side effect profile. Its not one of the medications that relate to Parkinsons.

It is being avoided in POTS because some doctors believe excess NE is a problem for POTS patients.

This is interesting info because the doc that just diagnosed me with POTS asked me today if I wanted to take part in the study he conducting with the drug. I go tomorrow for me initial evaluation. I'm hopeful but trying to be realistic. I'm sure we've all been there were we get to thinking what if there was just that one medicine that could make us healthy again.

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I think its pretty well tolerated. I know one doctor was trialling it on certain forms of POTS in the states so let us know how it goes. Supposed to have far less sideeffects than other medications that vasoconstrict.

Do you think it'd help your 'type' of POTS? I'm still trying to get my head around what type I have (but BBs do help, but so does Midodrine)...

Would the same people who benefit from this benefit from SSRI/SNRI if it is partly an NE issue?

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i received a call a few weeks back based on one (of several) autonomic-related research databases i'm in due to my young age and diagnosis w/ autonomic failure. they were hoping i might qualify for study participation but no cigar b/c i can't take the study medication by mouth - not to mention anything else for that matter (food, liquid, meds, etc.) - and as such the fact that i meet the "study criteria" is just as quickly nullified by the fact that i meant the EXCLUSIONS criteria too. eh well. in all reality i'm not sure whether it would have been a realistic proposition anyway as i would have required hospitalization for "safe" participation (according to those involved in running the study, though not any surprise to me) and they weren't sure whether that would be able to be arranged (aka paid for) seeing as it's not the typical protocol/ set-up.

it will be interesting to see the study results as things evolve......

:) melissa

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Well, I signed consent for the trial on Thursday. I go in Tuesday for my first visit and will have a physical and lab work done as well as orthostatic vitals (referred to as the standing test). I have to start the med within 7 days of this appt and return daily (for up to 6 days) for dose titration. Once the dose is at a therapeutic level for me, I'll stay on it for 7 days. After 7 days of active treatment, I will discontinue med for 7 days. I will then return for either a 7-day supply of the Droxidopa or placebo (double-blind) and return after those seven days are over. I will have more testing and this will conclude the study.

If I do not get improvement of symptoms after dose titration up to max allowable dosage, I will be removed from the study. If I do have improvement and wish to remain on the medication following the study, I can enroll in an extended study. I would be on the med for 12 months while they followed me for long-term side effects and by then the FDA should grant approval.

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My neuro is taking part in this trial as well - last I spoke w/ him things were going really well and people were feeling better on it. I see him again this week and look forward to finding out how far along things are.

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  • 1 month later...

I've been taking part in the Melbourne trial since May and i am still not sure it is going to work out for me, but want to try and persist.

I have been diagnosed as Dysautonomia with OH, not POTS. Severe headaches and fatigue is a problem. Florinef caused the headaches to worsen, DHE helped a little but I needed large doses orally plus a daily self-injection.

My doctor really felt that Droxidopa would be the one to put me back on my feet and get me back into life as OH is my main symptom. It certainly does increase the bp but it seems to increase the headache problem on the higher doses and I am still limited in activity despite the higher BP which is confusing.

How have other people found Droxidopa?

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  • 2 weeks later...

Yeah tests of Droxydopa elsewhere specifically used for POTS gave suprisingly unimpressives results. Given the theory that impaired norepinephrine reuptake is the problem and adrenergic peripheral receptors were getting exhausted as a consequence this is a great surprise.

I didnt want to say this incase it pre-empted anyone's responses here but it certainly makes me wonder about the true nature of these conditions and how close some of their theories are in relation to their primary causes.

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