Mannitol-for-PD "trial" now in progress
 

There is now an informal "trial" of mannitol for PD, being run via a website in Israel. Anyone with PD can take part. The "trial" has been running for about 3 months and they have about 800 participants so far.

They have structured the website such that you get to see the dosage recommendations after you complete an initial survey.

I joined about 3 weeks ago. I now add 1 level tablespoon of mannitol to my morning coffee, and fill out an online survey once a month.

At this stage I plan to hang in there for at least 6 months, maybe a year (the original researchers gave mannitol to fruit flies for about a month before retesting them, and it was 4 months for the mice).

JustCloud-IT download page

(hat tip to Ranico at HU for the link)

Hi Jeff,

I hope mannitol works for you. I tried it for 2 months with no change. Maybe I didn't go long enough. Please keep us informed how you do! Some of the folks on the website have been taking Mannitol since April. Where can you see the results of the trial?

Some extra information
 

The CliniCrowd website contains comments from people who have been taking mannitol since April, but the website itself was only launched about 3 months ago.

On the question of when some initial results will be available, about 3 weeks ago Ranico at HU said the following:
"We will present the data when it is statistically significant and when we finish the user interface. We expect that to happen in 3-4 month ..."

I found the following information on the PD FAQ page on the CliniCrowd website:
"According to some patients reports so-far:
- After 18-30 days with Mannitol they feel a change;
- 30-60 some observed a slight decrease in symptom improvements and even some regression;
- After 60 days they report steady improvement."

Six Month Update
 

I've now been taking mannitol for 6 months. I've also been taking N-Acetyl-Cysteine (NAC) for 3 months. I've also been doing 40 mins of high-cadence cycling every day for more than 12 months.

Things have been going really well for the past few months. How much of this can be attributed to mannitol, and how much to NAC (or the combination of both!), is not clear to me.

Mannitol might also be neuroprotective. This is something that is best measured over a period of years, rather than a period of months.

Putting a tablespoon of mannitol in my morning coffee each day is not very difficult, so I plan to keep going with the trial at least until my current stock of mannitol is used up (late next year).

Short Mannitol video.....
Parkinson's and Mannitol in the news channel 1 - Available with English Subtitles - YouTube

NOTE: No one should ever try anything based on some random comments on the internet. Do your own research and talk to your doctor before trying anything.

So . . .

Reviving an old thread because I believe people should take a closer look at this molecule.

First a brief introduction: My name is Joe Peck. I'm 51 years old, a loving husband and father of 3. I'm not a doctor, but I am scientifically trained and graduated Dartmouth College with Honors. Not bragging as I am keenly aware that there are many smart people on this forum, just trying to say I'm not some internet quack. I have Spinocerebellar Ataxia Type 1 as does my father and my aunt who are 80 and 74 respectively. SCA1 is similar to PD because one major underlying element to the disease pathology is a misfolded protein. In PD there is alph-syn and in SCA1 there is ATXN1. The progression is similar gait trouble, speech trouble, hand writing issues, etc. Sadly SCA1 progresses faster and is always fatal.

Now, having said that my reason for writing is to share my experiences with trehalose and mannitol. One year ago I started my father and my aunt on a regimen of 2 Tbs of trehalose daily in coffee. Both my father and my aunt have had zero progression in their disease over the course of the year. Now before I go any further I want to add that they are also taking 500 mg twice daily of Niagen, but that is for another discussion. In addition, I am active on several websites around the world and now have convinced more than a dozen people to try taking trehalose and/or niagen. Of the people that have kept in touch about 1/3 are reporting a stopping of progression.

My main point here is simply to say: When a patient with PD takes mannitol they may very likely see no improvement because IF the molecule is doing what scientists think it is doing then it can only stop progression. It really can't repair damage that has already occured. That is why people in the early stages of PD are far more likely to benefit from mannitol than are people in later stages,

BUT

and here is the big but . . . Mannitol is 1.6 calories per gram and is a long used food additive with no history of danger to humans. Isn't it worth eating 16 calories of a sugar substitute everyday for the rest of your life just in case MAYBE it's slowing the progression of your illness. To me the benefits vastly outweigh any risks. Most importantly I want to emphasize that my point is most PD patients will probably not experience any improvements from mannitol, but that doesn't mean it isn't slowing down the progression, and if it is simply slowing the progression really you will never know because we simply don't have anyway to test for that.

JP66, welcome to NeuroTalk :).

I am sorry to read about your Spinocerebellar Ataxia Type 1.

As far as I can see from PubMed there are no reported interactions between mannitol and ATNX1 (Ataxin 1).

I thought it only crossed the blood brain barrier when injected.

CliniCrowd 15-mth update
 

At this stage of the CliniCrowd "mannitol for PD" trial (15 months for me), everything is still going really well. However, I am not able to attribute this to any particular medication, supplement, or exercise (if you click on my name you can see all my medications, supplements, and exercises).

For me, this trial is more about long-term disease progression, rather than short-term symptomatic relief. Hopefully, a few hundred PwPs around the world will stick with it for at least a couple of years. Hopefully, that will generate some meaningful data.

However, I have recently become aware that there seem to be fewer and fewer of us left on the CliniCrowd trial who are still completing the survey every month. This will obviously impact the quality of the results of the trial.

BlueDahliasBrother said: "I thought it only crossed the blood brain barrier when injected."

It might be more correct to say that it might only cross the BBB in sufficient quantities when injected. When you take mannitol orally, most of the stuff gets excreted, and you can't take more than a certain amount orally or you will get diarrhea.

But we shall see (in another year or two) (maybe) ...