slower disease progression.

Today Dr. Schwarzschild and his Parkinson Study Group colleagues announced funding from the National Institutes of Health (NIH) to conduct an inosine Phase III trial at 60 U.S. clinical sites with 270 people with early-stage Parkinson’s. Enrollment is expected to begin early next year.

One quick, very important note: Inosine is available commercially as a dietary supplement, but patients should act with caution. Inosine has not been proven as a therapy for Parkinson’s, and, in the absence of medical supervision, it can cause serious side effects such as gout, kidney stones and possibly high blood pressure. It is critical to discuss any medications or natural supplements with your physician before taking them.

10 Replies

  • Good news about the drug trials here. Repositioning drugs is an excellent way to proceed for speed.

    However, the other part of the message is that dietary supplements can be pharmacologically active and are not always safe because they ate 'natural'. They have the active ingredient in variable amounts and are not governed by the same standards as drugs.

    Cheaper? Perhaps. Safer? How would you know? As effective? No studies to compare.

  • Cheaper? 5 to 10 times cheaper.

    Safer? Roughly 500,000 times safer based on the ratio of deaths and adverse health events.

    More effective? About 5 times more research papers by people who do not have a profit motive in the drug.

    What nutritional supplements do not have is the money to get doctors to prescribe them. That's an intensely expensive operation. First you have to buy FDA approval which does not necessarily mean good research. Then you have to give research grants and vacation-conferences to doctors, then you have to have more drug-promoters out in the field than there are doctors, and then you have to have the biggest lobby in Washington DC: pharmaceuticals are nearly twice the size of the next largest lobby which is insurance, and you can bet health insurance is the biggest part of that lobby.

    Natural compounds are infinitely safer because we have evolved to tolerate chemicals that nature can produce at low temperature and low pressure through DNA-based operations. Pharmaceuticals need a patent in order to make a profit and natural compounds can't be patented, so by definition they are always more dangerous and require a rigorous process to discover in what ways they will harm or kill you. It is intensely rare to discover a non-DNA chemical that does not harm or kill you faster than your disease. Natural compounds do not require this process because it is intensely rare to discover any natural compound that can harm you even when taken at levels 100 times higher than pharmaceuticals, and the harm is almost always temporary and not as great. It is intensely difficult to find a nutritional supplement that has ever killed anyone. Most instances were contamination in the production. They are food ingredients and food does not usually kill. Dopamine BTW is a natural compound and you have to take pretty high doses for it to be harmful.

  • Nature abounds with toxins including Snowdrop lectin, curare, digitalis, botulinum etc. we have learned to avoid them or adapt them for medicines but they are still 'naturally' found and produced by your DNA method.

    In this country, unless the product is sold with a specific symbol on the container there is no legal requirement for it to contain what it advertises on the packet. Thus Oil of Evening Primrose capsules have been shown to contain nothing from that plant at all.

    Not many people would choose to prepare a pain killer from willow bark rather than take an aspirin.

    How many supplement retailers would be able to tell you how your supplement will react to an MOA inhibitor?

    Let the buyers beware.

  • Snowdrop lectin was not very toxic until pharmaceuticals added hydrogen bromide under the disguise of "time release" which made it a lot more toxic. Lectins by themselves i beans and such are "self-correcting" toxins: you'll feel bad enough from eating it that you will stop.

    Same thing happened with niacin which lowered LDL and raised the good HDL as shown in one of the first double-blind studies in the 1950's. Pharmaceuticals got a hold of it, made it time release and toxic, and niacin's benefits got an undeserved bad reputation for liver toxicity ever since. The "red rash" only occurs the first day if taken twice a day (to get a benefit better than any statin) and was never a good excuse for the time release forms, but you can bet very few cardiac doctors are aware of this.

    Likewise for your other example: digitalis from Foxglove had a long history of folk use and wiki says "is considered the beginning of modern therapeutics" (in the west at least). Then the pharmaceuticals got a hold of it and turned it into patentable digoxin, and now its no longer used due to the increase in toxicity. Not that foxglove is safe. There are a few plants in nature that are toxic. Foxglove is actually the only one I can name offhand (other than mushrooms), and it seems it was the one that came up in your mind too. But even this one, when taken as in folk medicine is probably about as useful and dangerous as the average pharmaceutical.

    Curare, one of the most lethal chemicals found in nature, is not toxic when ingested.

    Botulinum is a toxin from bacteria. That's more like snake venom than an ingredient from plants or food.

  • But still made by the 'DNA method'

  • OK, my first sentence in the previous post should replace "chemicals" with "chemicals in plants we might potentially ingest". Add "that will not make us vomit" and the list of "dangerous supplements" gets really really really really really really small if you let EACH of my "really's" mean 10x less dangerous than a pharmaceutical that went through rigorous safety testing and was taken exactly like the doctor said.

    BTW, in the phase 2 trial on inosine, the UPDRS score got statistically worse in the placebo group but not in the moderate dose group. A direct comparison was not statistically significant, and in looking at the slope the moderate group also got statistically worse. But if this had been a pharmaceutical or patented curcumin paper you know the title would have read "UPDRS scores did not worsen after 2 years".

    They come in pill form but are not pharmaceuticals. To say they "never kill or harm anyone, nor interact with each other or with pharmaceuticals" will have an extremely small error. They are food.

  • They became interested in inosine because it has been noted people with gout are more likely to be intelligent and do not get PD near as often. I personally believe believe the urate-producing proteins in beer are why beer helps but not other forms of alcohol. Inosine increases urate which can cause gout, but it also appears to have a directly protective effect. Cipriani and Schwarzchild are the main ones who have been interested in the urate connection. Here are Scharwzchild's papers on inosine:

    His phase 2 trial research paper link is below. Urate (a gout predictor) was raised about 50% but none of the 50 participants needed to stop due to gout problem. Schwarzchild is the lead investigator. Unlike all the curcumin groups which do not have any decent scientific support, Schwarzchild does not have a patent on a formulation nor is he funded or directly connected to a company producing such a thing and already has a lot of data on humans in several studies that are freely accessible.

  • Wow, thank you BOTH for that very informative exchange. You saved me tons of research time. We are (USA) a capitalistic society. It permeates our health industry. Acknowledging that (for me) removes a great deal of resentment and awakens greater mindfulness and caution. I am of Mexican descent and herbs was a huge part of my family's health system. Because of that I have no greater fear of supplements than I do of pharmaceutical meds. Both should be researched and approached with caution.

  • The problem with many substances, "proven" to have an effect on PD is the quantities used can be deleterious to your health. I know there is a study with CO Q-10 having a beneficial was 1200 plus mg. That is a lot of CO Q-10 and not really, really guaranteed for prevention or cure.

  • I found an inosine provider that will send 1 kg for $68 via paypal which is 350 times lower than amazon. I am not going to take it because my urate is already higher than the study's high dose group (7-8 mg/l). Private message me to get their contact information. I am not affiliated with them nor can I assure they send it nor that it is high quality. But direct from china (instead of U.S. middle-men companies) is how I am starting to get my supplements.

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