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ShopGuy

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ShopGuy last won the day on November 4

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About ShopGuy

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  1. ShopGuy

    Off Label Prescriptions Approach to MDS

    One more note regarding dosing of TUDCA. If you follow the link in my post above to the Science of Parkinson's blog, you'll find that of the few studies of TUDCA in humans, none of them recommend doses as high as 1250 mg/daily. In fact, one study (in liver patients) found side effects between 1000-1500 mg, and recommended doses of 10 mg/kg body weight for future studies. Under that guideline, 1250 mg would only be appropriate for someone 275 pound or heavier. If I had ALS, chronic diarrhea from taking an unproven compound might be worth it, for the chance at slowing the progress of a fatal disease. But PD isn't ALS--not even close.
  2. ShopGuy

    Off Label Prescriptions Approach to MDS

    '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.
  3. ShopGuy

    Off Label Prescriptions Approach to MDS

    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.
  4. ShopGuy

    MDS suggests amantadine: who here is on it?

    Thank you all for your input.
  5. Say my MDS yesterday for another round of botox injections for foot dystonia. Have a regular six month neuro exam scheduled in March. Yesterday, I mentioned tremor and rigidity has increased to where I'm interested in adding another med to the Azilect (only dopaminergic med I take at the moment). MDS suggested amantadine, and said we'd discuss it at next appointment. I know some take it along with C/L to control dyskinesia, but not familiar with its use as monotherapy (well, not quite monotherapy--I'll keep taking the Azilect). Appears to have the same laundry-list of side effects as all PD meds, which is only helpful if you know how common each side effect is. And if there's enough symptom relief to be worth the risk. I've taken Neupro (skin patch agonist) in the past--it worked okay, no scary side effects, but I could never really shake the nausea from it, and had some mild afternoon sleepiness. It's also expensive. Anyone have experience with amantadine, particularly taken without C/L?
  6. ShopGuy

    Nilotinib clinical trial

    The trial I was in was three spinal taps in (IIRC) about 3 weeks. It actually wasn't too bad.
  7. ShopGuy

    Nilotinib clinical trial

    My MDS is running a Nilo trial at one of the research centers. I don't take C/L, so don't qualify. My understanding is, it's not a stereotypical chemo drug--no hair loss or nausea. But it does have an FDA black box warning for certain heart conditions. The health-based exclusion criteria for the trial are extensive--it looks like a pretty serious med. https://foxtrialfinder.michaeljfox.org/trial/4999/
  8. ShopGuy

    "Levodopa Phobia" Case Studies

    An interesting read. Four case studies where exaggerated fear of l-dopa side effects caused patients to delay or avoid treatment: https://www.nature.com/articles/s41531-018-0067-z
  9. ShopGuy

    has anyone seen this?

    Here's the Science of Parkinson's blog take on that research: https://scienceofparkinsons.com/2018/11/01/appendix/#more-52164 The take-away: the recent work from the Michigan researchers found appendectomy associated with about 20% reduction in incidence of PD--hardly a guarantee that having your appendix out will protect you. And there have been previous studies that show no association between appendectomy and PD, or even the opposite: appendectomy associated with an increase in PD. Here's a quote from the blog:
  10. ShopGuy

    has anyone seen this?

    Here's the Fox Foundation adding a dose of reality: https://www.michaeljfox.org/foundation/news-detail.php?pill-to-stop-parkinson&fbclid=IwAR2Mp_M0M_Fjpoigz8IVWA71YCXMrYVU7kehO26qQ_VAcf11maPinBboO08 I applaud what the researchers are doing, of course. And I expect the journalist who wrote the article is reporting research in his home town, and doesn't know much about PD or the history of PD research. A drug that looks promising in animal models and may move to Phase I human trials is like the sun coming up in the morning. It happens all the time, and it's good that it keeps happening. It would certainly be bad if it didn't, but it's what happens after that counts. Odds are, this drug won't do what the researchers hope. That's how science works--if you're not failing most of the time, you're not trying enough ideas. It's too bad the journalist didn't mention that in the article. It's also too bad he didn't mention the dozen or so PD treatments that have passed Phase I, and are in Phase II or III trials right now. Those have a much better chance of success. At least three are approved for other uses, so if it turns out they work for PD (including advanced PD), they'll be available very quickly. That's the real story.
  11. ShopGuy

    New Caretaker/Drug Interactions

    Calliope, out of curiosity, did the neuro give any reason for refusing to take your husband off Azilect? Did he do any physical exam for PD, or just want to do an 'Azilect challenge'? It's great you're going to see an MDS--the difference between them and general neurologists is often night and day.
  12. ShopGuy

    New Caretaker/Drug Interactions

    Hi Calliope, If it were me, the first thing I'd want is a second opinion from an MDS. Your husband's neurologist can make a referral--if not, it may be time to look for a doctor who will. You might want ask the current neuro about stopping Azilect, given that it doesn't seem to be doing anything. That should help with worries about drug interaction and serious side effects (for what it's worth, sleep attacks are very rare with Azilect--that's more a concern with the agonists). No PD drug is proven to do anything but treat (some say 'mask') the symptoms--if the symptoms aren't troubling your husband, there's no good reason for him to be taking PD meds yet, if he doesn't want to. Without a second opinion and with only mild symptoms, it's hard to see how the dx is anything but a 'maybe,' especially since the neuro who made it isn't a PD specialist. Has your husband had any testing to rule out other conditions? MRI to rule out other neuro issues? Test for Wilson's Disease? Those tests are usually standard with suspected PD, because there are other (rare) conditions that can look a bit like PD but are more serious. Being young and with tremor as first symptom, a DatScan to rule out essential tremor prob. makes sense. It seems like you and your husband ought to be able to insist his work doctors and the DMV don't treat this as a confirmed dx until a PD expert confirms it. That at least may give you some breathing room. Frankly, from what you've posted, your current neuro doesn't seem to know much about PD.
  13. ShopGuy

    New Caretaker/Drug Interactions

    Hi Calliope, The first few months post-dx can certainly be overwhelming. Hard as it is, sometimes the best approach is to focus on all things that haven't changed, rather than what seems to have changed overnight. Like others have said, kudos for being your husband's advocate during a hospital stay when he may have found it difficult to advocate for himself. But given your previous post, and how mild you described your husband's symptoms (and the fact that he's YOPD), I'd be a little cautious thinking of yourself as a 'new caregiver' all the time. Has anything about his condition really changed , just because he has a dx now? If he didn't need a caregiver before dx (except for those times, such as hospitalization, when everyone does, PD or not), how has hearing the dx 'PD' suddenly changed that? I apologize if this misunderstands the situation--I'll just say, from my own experience as a person with PD, independence and self reliance--as much as possible and for as long as possible--are a big part of how I've come to terms with the dx. The way you describe your husband's symptoms sounds a lot like where I was four years ago. Four years later, I'm still working full time in a physical job, backpacking, even climbing the occasional mountain. My dx was certainly a big event in the relationship I have with my wife--not as big as having kids, maybe, but big. Still, when I've progressed to the point she becomes my caregiver, that will have a huge impact on the way we relate to each other. I've seen it in other couples. I'm grateful she'll be my caregiver when I need her to be. But I want that day to be as far in the future as possible. One guy's opinion, for what it's worth.
  14. Choice of Azilect as a 'challenge' drug is odd--never heard of it used that way before. I think the consensus is, the level of symptom relief from Azilect is modest (at best), and it usually takes a couple weeks to build up to point anything is noticed. Doesn't make much sense as a diagnostic tool. Beyond that, it's weird the neuro would say he can't prescribe Azilect w/o a PD diagnoses. I'm not a doctor, but I believe doctors have the right to prescribe anything they want 'off-label' for any suspected condition, based on professional judgement--no formal dx necessary. Maybe he wanted to make sure your insurance covered the Azilect? Still, most doctors have samples they can give patients to cover treatment short-term. I suspect the possibility of PD will ruin chances for long term care insurance, regardless. FWIW, I don't think many of us have it. It's been discussed on the forums if it's worth it even if you can get it--the aging population means a lot of long term care insurance providers will prob. go bankrupt and not be able to pay anyway. Good thing with YOPD is it's probably going to be decades before that kind of care is necessary--typically, we progress pretty slowly.
  15. ShopGuy

    For those that think C/L causes Dyskinisia ?

    McCall, There may be a subtlety that's being missed. Levodopa does cause dyskinesia; unlike tremor, dystonia, bradykinesia, and rigidity, levodopa-induced dyskinesia (LID) isn't going to be a symptom in unmedicated PWPs, no matter how long they've had PD. I don't think Dr. Okun has said otherwise. What recent studies have shown is that LID is caused by how much levodopa is taken, not for how long. In other words, it's not like we only get 'x' number of good years where levodopa controls symptoms without causing dyskinesia, and so should wait as long as possible before starting (so-called levodopa-sparing strategy), it's that disease progression requires increasing amounts of levodopa to relieve symptoms. Eventually, the amount of levodopa required for symptom relief is about the same as the amount that causes dyskinesia. In addition, sensitivity to levodopa seems to vary. I have a friend who can't tolerate much at all without dyskinesia--this led her to get DBS earlier than other folks might have. My dad had some dyskinesia when his meds were still being adjusted in the first couple of years post-dx—and I think he may have also intentionally over-medicated sometimes to function at a higher physical level (when family visited, for example). Eventually, he didn't have any noticeable dyskinesia (or much tremor, for that matter), but that may have been because he settled for a lower level of mobility and symptom relief. My MDS thinks it will be a few years before I need to start C/L, but I think that's because he doesn't think it's necessary or beneficial for me yet, not because he believes in the levodopa-sparing strategy. Regardless, starting C/L seems like a big step (at least psychologically), both for the dramatic results it can have in some PWP, and the idea that one has progressed to point of needing the 'big guns.' I have mixed feelings about going on C/L, but the risk of dyskinesia isn't really part of it.
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