Anyone taking inosine now and not waiting for trials?

Hi. A query about taking inosine to boost low uric acid levels in people w/early stage PD as a way to reduce symptoms and gain some neuroprotection. Phase III trials coming next year (link below)

With inosine available OTC for a pittance there’d been some discussion here about trying it now and not waiting for the study and its results. I understand too much uric acid increases chance of gout and kidney stones. Still, I’m tempted to try now, albeit methodically and cautiously.

Scored 3.0 with a uric acid blood test the other day. It was described as low side of normal (for the general population) Before going further, I would love to hear from those who’ve tried this self-medicating route with inosine.

In the last posts on the subject, a few months ago, some were about to try it. If you have a moment...what's been your experience so far? What dosage do you take? How often do you get your uric serum levels tested? What numerical level are you aiming for? Have you felt better? Have you experienced gout, kidney stones, other side effects? Any sense it conflicts with other meds or supplements?

Any light you can shine would be much appreciated.

On the other hand, how does one get into the clinical trials?

michaeljfox.org/foundation/...

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  • I decided not to take it because a blood test about 2 years ago showed my urate to be just above the "normal" range (mine was 8.3), above their high group which was 7 to 8 mg/dL. They were giving enough inosine to get their urate up to 7 to 8 for their "high" dose group, from 0.5 to 3 grams per day in 1 to 3 doses per day (1 gram three times a day would be the highest they gave anyone). So If I was you, I would take it like this for a few days, then maybe settle on 2 grams per day. 1 gram to be safer. And stop if gout comes along.

  • I've been taking Inosine for two months. Started with two capsules - 1000mg per day and am titrating up to six - 3000mg. The dose used in trial II. I'm about to have a blood test. I'm aiming for 6-8 mg/dl as in trials. I definitely have lots more energy and no side effects. It will be 2020 before the trial is finished and written up and I wasn't prepared to wait. I have the support of my GP

  • Hi Motal,

    I see you are from USA so information I have on finding trials may not be relevant. I use MJF Trial finder along with Cure Parkinson's, Patients Like Me (USA), Parkinson's UK & our medical support network including Parkinson's nurses.

    Re gout & urate levels - I take it you have never had an attack of gout. I had one experience around 7 years ago & I have not missed a dose of Allopurinol since. I liken it to being a 'recovering' alcoholic. The gout pain is sudden, severe & excrutiating. The heat generated from the affected area could have fried an egg from a foot away!

    By all means try what you will for PD (I have tried many treatments, therapies & trials) but if there is a risk of a gout attack please take medical advice. Having a structured, quantifiable framework with access to the latest research theory, practise & support are some of the reasons to take part in trials. That.......& the chance to pool experiences for the greater good as well as for personal benefit.

    Good luck!

  • There is risk of a lot more than a gout attack from raising urate levels - think kidney disease, stroke, hypertension and diabetes. These are all well documented in the medical literature. Raising urate levels for PD is a really bad idea. Try taking NAC instead which has already been shown to improve the underlying condition in Parkinson's without the adverse effects.

  • What is NAC and how can I get some?

    SELFMeder

  • NAC = N-acetylcysteine, a supplement available over the counter.

    Here is the study that showed benefit: journals.plos.org/plosone/a...

  • Thanks to all y’all for sharing. Much to weigh: risk v the clock; something to gain v. not quite nothing to lose.

    Faced w making such decisions, the head can feel as taxed as one's gait.

    Speaking of which, for those who are trying inosine now, any improvement in gait?

  • Hi Motal interesting post would keep us in the loop about your decision re Inosine

    Thanks Sunnysky

  • I've now had the results of my uric acid blood test. I scored 151 umol/L which is 2.5mg/dL. LOW! I'm titrating up my Inosine. Now on 2000mg (4 capsules). Will go up to 6 capsules over time. Stage II trials were aiming to raise levels to 6-8mg/dL, so I've a long way to go. But. I already have so much more energy!

  • Motal, I too am interested in the Inosine trial but also share your ambivalence about the risk of gout and kidney stones. I go in this coming Friday to get blood test to see if I am a candidate for the trial. What I find curious is that there is the hypothesis that boosting urate will improve symptoms or offer neuroprotection but I don't see any specifics from earlier trials that support the theory. Does anyone have results from earlier trials that speak to this? Still, I am curious and going to visit the neurologist about my candidacy for the trial. I will share what the dr suggests. I haven't decided I am going to do this but I do want to get more information. Keep me posted on what you learn as you progress and good luck!

    PS I posted other discussions on Inosine you might want to look at replies there.

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