Inosine, Israpidine, NAC, Glutathione clinical trials - Love to hear from those who have experience with these.

[p-oui]

Inosine and NAC trials are still open.

Glutathione trial complete (I would like to see the results)

Israpidine recently closed (phase III) after record enrollment, michaeljfox.org/foundation/...

[Astra7]

Have you tried NAC?

[p-oui in reply to Astra7]

Hi Astra, Today I am just starting NAC, 600 mg 2x day. Here is a little info.

"The use of N-acetyl cysteine (NAC) has been proposed as a disease modifying therapy. NAC is already approved for use in both short term and long-term conditions and given the known associations between GSH and PD pathogenesis, it is a promising neuroprotective therapy in PD."

"This study reveals a potentially new avenue for managing Parkinson's patients and shows that n-acetylcysteine may have a unique physiological effect that alters the disease process and enables dopamine neurons to recover some function," said senior author on the paper Daniel Monti, M.D., M.B.A., Director of the Myrna Brind Center of Integrative Medicine, and the Brind-Marcus Center of Integrative Medicine at Thomas Jefferson University.....Compared to controls, the patients receiving NAC had improvements of 4-9 percent in dopamine transporter binding and also had improvements in their UPDRS score of about 13 percent.

jefferson.edu/university/ne...

See also: clinicaltrials.gov/ct2/show...

I don't know what your primary symptom is but if you take it I would love to share notes. If you live near Philly you may want to enter the trial. Good luck with it!

[Astra7 in reply to p-oui]

I live in Western Australia, but I don't think there is anything to lose in trying this. It seems I can buy it cheaply and I can't see any bad side effects really. My symptons (rigid left leg and slight tremor in left arm and slipping left face) are so much better since I have been taking azilect, magnesium and recently B12. However, I just feel wrong and move so slowly and also feel fuzzy, which may be the azilect.

I will order some and start my own trial. I'll let you know if it helps. I am only 52 and am really keen to stop the rot, as is everyone of course!

Incidentally, do your MRI's show anything wrong?

[p-oui in reply to Astra7]

Hi Astra, I am so sorry to hear you have to suffer this. I, too, am on Azilect and after a few days I felt 'brighter' and easier to work out. The first few days I did feel a little out of it. I agree with you about NAC. After research, including chats on this board, B vitamins are good for mental clarity but for them to work you need vitamin K , loading up on vitamin C should help. also read that this is a particularly good fish oil, below. Maybe I should get on Magnesium. Here are the vitamins I ordered all on Amazon after what seemed like exhaustive research to settle on these - though I am sure others have much more knowledge and experience than I do and they may share:

Jigsaw Activated B w SRT Slow Release B Complex Supplement Vitamin B Complex Tab

Sold by: Jigsaw Health, LLC

$26.97

Amazing Nutrition Vitamin K2 Menaq7 100 Mcg 120 Vcaps - Supports Calcium Uptake and Bone Mineralization - Supports Healthy Bones* -- $14.99

EuroPharma - Terry Naturally Vectomega - 60 Capsules

Sold by: Livamed

$34.81

Some have suggested emergenC and I ordered Freeze Dried Acerola Cherry Powder as a natural source of high vit C

I recently had the MRI but they won't give me the results, they only give it to the neurologist who I meet in a couple of weeks.

Astra, you may get lucky with a trial as I am trying to do though I hate the idea of getting the placebo. I hope others in trials actively share their personal results because the results take so long to get published. That's a great value of this board.

Are you working out? It will surely help. If you need a distraction try following the US presidential election.

I am rooting for you -

[Astra7 in reply to p-oui]

The magnesium reduced my toe curling up at night by about 90%. I started it before I was diagnosed.

There is a limit to what you can take though! I want an all in one pill!

I ordered the NAC today.

We are following the us election with great interest - much more entertaining than the Aussie one! We are happy to have Bernie move over here though seeing as you guys don't want him!

[p-oui in reply to Astra7]

Astra, this single pill might be helpful, Sylvestro on this board recommended this: swansonvitamins.com/swanson...

It only has a little NAC, if I read it correctly, so you could take them both together.

PS We love Bernie I just think he is a little ahead of his time ... the entertainment value is high but a bit stupendous at times.

[Astra7 in reply to p-oui]

Tnx.

Have a good Monday!!!

[munchybunch in reply to Astra7]

Hi I live in Sydney. Where do you get yr supplements pls?

[Catlou in reply to p-oui]

I use Jefferrson movement disorder and my doctor never mentioned a trial.

[p-oui in reply to Catlou]

It makes me wonder if there is too great a divide between research and clinical care. I do all the homework I can on trials and see a neurologist who has a research focus and gets the main trials so that helps.

[p-oui in reply to Catlou]

Catlou, did you ever find anything out about the NAC trial at Thomas Jefferson?

[maryalice]

I wasn't in a clinical trial, but had glutathione treatments with a Dr. Paul mutter in a clinic in Naples, FL. This was about 12 years ago. It didn't help me, but I witnessed it helping someone else.

[p-oui in reply to maryalice]

Glutathione can be an IV or it can be ingested via a nasal spray. They recently did a clinical trial which included benefits of the nasal spray but I don't have the results. The neuro who lead it said she would only send it to my MD. So I will be happy to share it as soon as I get it and I am certain the results will be published soon anyway.

[AmyLindy in reply to p-oui]

Any updates ?

[silvestrov in reply to maryalice]

Do you mean, Dr. David Perlmutter?

youtube.com/watch?v=KWuOezg...(Not working as expected?)

[p-oui in reply to silvestrov]

Rich, thanks for sharing this amazing video. I am very curious what they learned from the recently completed glutathione trial and, NAC, upcoming trial.

[p-oui in reply to p-oui]

This looks like the results of the completed clinical trials:

[PDF]glutathione in parkinson's disease laurie k mischley - University of ...

digital.lib.washington.edu/...

by M Rosenfeld - ‎2016

[maryalice]

Yes. The doctor in the video.

[Ruffinglgo]

Yes I am currently taking 5mg Isradipine in the morning and 1/4 top Inosine before exercise. Holding my own. Very interested in AtreMorine and nasal spray Glutathione.

[p-oui in reply to Ruffinglgo]

Ruff

I would love to hear what you know about the glutathione and nasal spray. Also any additional info on how you have found the inosine to work for you. These are two supplements I am considering taking. Appreciate any insight. Thank you

[p-oui]

Is Inosine helping? I haven't started it yet but take 1200 mg NAC now with good result

[Ruffinglgo]

You need a prescription to get a compounding pharmacy to prepare the glutathione nasal spray. I would investigate compounding pharmacies near the glutathione study site Bastyr University in Seattle. My neurologist will not write a prescription but I will ask her again when I see her next week. The nasal spray should be shipped on ice. Be wary of websites. I think the name is Key Compounding Pharmacy. Inosine I use occasionally. Like a supplement.

[p-oui in reply to Ruffinglgo]

Thank you, I will keep you posted on what I learn . If you haven't tried it already, I am taking NAC supplement 600 mg twice a day, morning and evening, and I think I see improvement. They are doing a clinical trial, same dosage, in Philly

[Ruffinglgo in reply to p-oui]

Thanks for the NAC dosage info. I just started 500 mg NAC daily and added K2 AS MK-7 to list of supplements. I continue Mannitol 1 tablespoon daily. Keep me posted on your progress.

[p-oui in reply to Ruffinglgo]

How is the mannitol working?

[p-oui in reply to Ruffinglgo]

Any doctor can prescribe, suggest you ask another doctor to help you. It doesn't have to be your neuro but on that note I wonder if your neuro has read the results of the glutathione spray, see the link in this thread. I asked my neuro if he had (I have) and, like me, he said he found the results difficult to understand.

[p-oui in reply to Ruffinglgo]

Ruffinglogo, how is it going with the glutathione nasal spray?

[Ruffinglgo in reply to p-oui]

Haven't tried it yet. I am unable to get approval from my neuro and my body has newer more pressing challenges. Still taking Rytary and Neupro. Health insurance with .gov will not cover costs. Neupro patch doesn't work. what next? Clinical trial waiting list. Found it on Facebook not Fox Trials. I asked my brother what helped him the most early on in the disease. He recommends Requip. There's a generic for Requip made who knows where? Neuro believes my problem is sleep deprivation. Legs weak. I am going to get in high gear starting now and EXERCISE. That and prepare for switch to Medicare December 7. How goes it with you?

[Ruffinglgo]

My understanding is that the mannitol takes time 6 months but I am interested in effect of NAC. seems to work as a detox initially at least that is my experience. That it may boost glutathione production along with diet exercise and denatured whey is reason to give it a go.

[p-oui in reply to Ruffinglgo]

I have been taking it a couple of months, I believe I see tremor improvement. That is my primary symptom.

[p-oui in reply to Ruffinglgo]

Ruff, I shared a post on NAC yesterday which details a recent smaller trial which showed a good outcome for the test subjects (a 12% improvement). The larger trial at Jefferson doesn't seem to be published yet, fingers crossed.

[Ruffinglgo]

Very interesting!

[bassofspades]

I have been taking Isradpine for several months now and i have not gotten worse. I also work hard to increase glutathione every day, and the benefits take a little time to notice, but are great in terms of energy, and they are cumulative. Keeps getting better and better.

[p-oui in reply to bassofspades]

Are you still taking israpidine? How is it going?

[bassofspades in reply to p-oui]

Yes indeed! I stopped for a short period of time and started to feel worse. So now i take it religiously.

[p-oui in reply to bassofspades]

Interesting, in what way? Has it impacted your tremor (if you have one)? I assume you have high blood pressure or how do you get it Rx'd?

[bassofspades in reply to p-oui]

I dont have hypertension. Maybe a tiny bit. Isradapine is a weak drug for that anyway. My dr doesnt really know what to do with me so she just does what i ask her, as long ass i make a good case forit and it isnt going to raise any red flags and get her in trouble. And as long as its safe. My tremor is when i am in motion, not at rest. Hasnt had that much impact on that, more in my fatigue and muscle aches.

[bassofspades]

Other ways to increase glutathione include curcumin and undenatured whey protein isolate, which is high in cysteine.

[p-oui in reply to bassofspades]

Glad to find it bassof spades, how are you taking glutathione, what quantity?

[bassofspades in reply to p-oui]

I dont take glutathione, i take the precursors and my body makes it. You cant eat glutathione, it won't make it through to absorbtion. Take ubdenatured grass fed whey protein isolate 30g per day, and turmeric capsules. NAC is good too. Forget the iv stuff.