Is anyone in the Inosine trial? Is anyone taking Inosine outside of the trial?

[p-oui]

I am considering both options and would love feedback.

For more info: michaeljfox.org/foundation/...

[stevie3]

Yes, I've been taking it (outside of the trial) for nine or ten months. No adverse effects, I keep a close eye on my bp. I'm in the relatively early stages of PD so I thought it worth a punt. Whether it's effective in slowing progression of the disease I guess I won't know until further down the track.

[p-oui in reply to stevie3]

Thanks, I am thinking of taking outside of trial but unsure of how much to take, etc. I am eligible for the trial. Should I come clean with my neuro and tell him I am considering going outside the trial world on this one? He would like to enroll me in the trial but I want to pick my clinical trial carefully and Inosine is over the counter.

[stevie3 in reply to p-oui]

I assume, however, that if you enrol on another trial, you'd then have to 'declare' the Inosine and possibly stop taking it or it would confuse the results of the new trial. I was offered a place on a trial in the uk on the effect of statins on PD but I declined, partly because I didn't want to stop taking the stuff I already take but also because I didn't really want to take statins.

[p-oui in reply to stevie3]

Thanks, I had not thought of that, thanks again

[stevie3 in reply to p-oui]

I could be wrong, so check it out, but I've always assumed that they'd want you to take your normal medication plus whatever they gave you for the trial .

[p-oui]

It's tricky, the neuro I am working with on this does a lot of the trials. The rule is this: one trial at a time. You are correct that they want and need to know everything you are taking but if you are in a trial taking it you won't be considered for other trials (in the US but I imagine everywhere). The inosine which is for urate levels is different from the israpidil which is medication for high blood pressure repurposed for PD and I missed that trial and I do not have high blood pressure so I can't get on it. Anyone with high blood pressure should get on israpidil and the literature states that. If you are taking inosine you need to have urate levels tested routinely because if they go to high you can get gout or gall stones. If you are taking inosine I also learned you should not take vitamin C. So keep that in mind and keep in mind you'll want to check your urate levels. I may hold off on inosine until I get into a trial now that I think through this. Once in a trial they can't stop you from taking a supplement but they will need to know about it, as you suggest.

Thanks for sharing, please let me know how it goes. Hope it gives you some neuroprotection and symptom relief!

[Catlou in reply to p-oui]

i have insonine and have taken it off and on. i should start it again. the dosage is 500 mg 2x a day. it is deemed safe. kidney stones and gout are possible if you are prone to this dont take it. i also switched to Israpadine from toprol for high blood pressue 5 mg 2 x a day and dont take the second one if my blood pressue goes below 100/60 as per my doctor. i started mannitol anf take NAC. i have read somewhere about taking vitamin K2 with mannitol so i am going to order that. i also just ordered some probiotics. it cant hurt.

[p-oui]

What benefit did you see with inosine and may I ask how long you took it?

[Catlou]

None. I though they only knew that high urate levels = lower chance of pd.