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Showing content with the highest reputation since 12/04/2018 in all areas

  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.
  3. 1 point
    Fred would LOVE to tell you more. 😀
  4. 1 point
    My husband was on it for five years with no problems then he started having halucinations and they decided it might be the Amantidyne though that made no sense to me, but after stopping it they stopped.
  5. 1 point
    I took only Amantadine for over a year early in my disease. The local neurologist (my first) was a vascular specialist and had only basic knowledge of Parkinson's. He initially gave me a very limited c/l test which didn't seem to work. The Amantadine did "work" for about a year before my disease progressed to the point where the drug was useless, or it just stopped working for whatever reason. I say "work" because it had a very limited affect. I suffered for another year before finding a good MDS. I did have a problem with extremely vivid dreams when first taking Amantadine. Not really nightmares, but they would occasionally wake me. But cannabis was great in this regard as it prevents dreaming for me altogether. Or at least I do not remember having any dreams. I have yet to try it again, even when recommended to address dyskinesia.
  6. 1 point
    I was just prescribed for me. Haven’t tried it yet. I do have tremendous confidence in my doctor.... LAD
  7. 1 point
    My husband was on Azilect, Amantadine, and Artane for probably close to 10 years. This past year the "little-gun" drugs (as his MDS called them) weren't working as well for him and he was having trouble maintaining his exercise. He now is on a combo of Azilect, Amantadine, Rytary, and C/L (just one at night) and it's working for him. The good thing about PD drugs, his doctor reminds us, is that if they don't work, you can stop and try something else and even go back to try something you were on before. You can try them and stop (with the doctor's advice, of course) if they don't work for you. He did try a dopamine agonist and he responded terribly (flu-like, flat affect - I felt we "lost him"). His doctor took him off after about four weeks and it took another two weeks or so before he cracked a joke. It was like he came "back to us". There are things from that time that he simply doesn't really remember. I love it that his doctor will make adjustments quickly if the drugs don't work out. Good luck!
  8. 1 point
    I was given a very small dose of liquid Amantadine for about two weeks in 2011. For me, it caused audio hallucinations. Dianne
  9. 1 point
    Hi noah. I was wondering how long you've had PD.For your speech improvement and to keep yourself busy,have you thought of joining the church choir?Some churches hold multiple singing practices and congregational services,during the week and on weekends.
  10. 1 point
    Thanks for all the good ideas nut I am challenged because I cant drive, my balance is really bad, in addition my speech is really bad and I cant use my hands to write anything. I do volunteer at the food pantry @ church but once again because of my balance and my tendency to fall I am limited with what I can do. I used to take a boxing class but had to stop b/c my balance is so bad so i pretty much feel like i am left with nothing to do I took the LSVT program about 2 years ago and while it helped at the time it hasnt been helpful despite doing the exercises
  11. 1 point
    I did the LSVT BIG program. Exercises that focus on speech, balance, and fine motor skills. Huge improvement. I havent had bad fall since completing the program, and its been 6 months!
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