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Showing content with the highest reputation on 12/10/2018 in Posts

  1. 1 point
    'Off-label' = prescribed for some use/condition other than that approved by the FDA. It's legal and common for doctors to prescribe drugs off-label, but insurance companies can (and do) refuse to pay for off-label rx. In my case, isradipine was prescribed by my MDS, after we figured out I wouldn't qualify for the STEADY PD-III trial. Generic isradipine is cheap--my insurance has always covered it, no questions asked. Dose is 10 mg/day: (2) 5 mg capsules, each morning. Based on the Phase III protocol, I should prob. split up the dose, morning and evening, but haven't had any ill effects doing it this way. Edema is a common side effect, but I haven't had any. Never experienced any effect on symptoms, but wasn't expecting any. Progression has been slow for me, to-date, but I exercise and also have high-normal blood urate levels (there's some evidence higher urate levels are associated with slower progression, and a urate-raising supplement is in Phase III trials). As you probably know, YOPD and tremor-dominance are associated with slower progression, so I tick those boxes, too. I guess I feel pretty fortunate to have the 'right' kind of PD. Although not quite as fortunate as the other 499 out of 500, who don't have PD at all. (I'm joking--sort of.) A few other people here are taking isradipine, including one person who was part of the STEADY PD III trial. Search the forums, and you should find more discussion.
  2. 1 point
    That's not accurate. Phase 1 human trials have only just started for UDCA in Parkinson's; the trial is open-label (not placebo-controlled) and small. There have been a couple small human trials of TUDCA, but in patients with ALS and MS, not PD. More here: https://scienceofparkinsons.com/2018/04/16/udca/ UDCA/TUDCA *may* eventually prove to have benefits for people with PD, but it is far too early to say, one way or the other. The vast majority of drugs that show promise in animal models or early human trials fail more rigorous trials. As miracleseeker suggests, there's at least one UDCA/TUDCA evangelist on these forums. If he turns out to be right, it's because of a lucky guess, not hard data. Full disclosure: I take isradipine off-label (prescribed by my MDS), because there's a chance it will be shown to slow progression and I didn't qualify for the Phase III trial. But I didn't start taking it until it had already passed Phase II (large-scale testing for safety in PD patients) and Phase III (large-scale testing for efficacy) was underway. Phase III wrapped up last month, and results should be published sometime in 2019. If results are positive, I'll continue taking it; if not, I'll stop immediately and save a couple bucks every month. Edit to add: It seems unlikely to me that readily-available and widely-used drugs or supplements will be game-changing PD treatments--if they were, we'd already have the data. And there's no reason to think a drug that slows progression will have symptomatic benefit (and vice versa). It's well known temporary improvement in PD symptoms is highly susceptible to placebo effects, hence the reason open-label studies should be viewed cautiously.
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