Hopefully one day, we will read something similar about Parkinson’s…

[Michel0220]

news.sky.com/story/new-drug...

A new drug has been found to slow the progression of Alzheimer's, with experts hailing it as a "turning point" in the fight against the disease.

[Stillstandingstill]

For PWP in the UK it will be interesting to see if this treatment gets NHS funding approval. It might be an indication of future decisions if a viable PD disease modifying therapy is identified.

It makes me angry though, that so many people can't see an NHS dentist which could prevent some Alzheimer's cases in the first place. There's a fixation on cure, particularly with expensive medication, rather than prevention.

Moving on now I've had my rant, it's good news.

[Esperanto]

Or the pharmaceutical and biotech industries have led Alzheimer's specialists astray. The medications and blood tests are mainly commercially interesting. Neurologists Pim van Gool (Amsterdam UMC) and Edo Richard (Radboudumc and Amsterdam UMC) pointed out in my Dutch newspaper NRC on Thursday that despite treatment, the disease is rampant. In the article 'Alzheimer's and the elephant: the panaceas don't work' they find the effect of the agents far too meagre, the use way too expensive, and the side effects too great.

nrc.nl/nieuws/2023/07/13/al...

[chartist]

Michel,

They are writing this as :

' Donanemab was found to slow "clinical decline" by up to 35%, '

Which sounds impressive, but compared to this :

lifeextension.com/newslette...

A relevant quote :

' Benfotiamine intake participants additionally experienced 77% less deterioration in Clinical Dementia Rating scores compared to the placebo group '

Benfotiamine has an enviable safety profile, is readily available without a prescription and is inexpensive.

On the other hand Donanemab has some potentially very serious side effects that include death as discussed in the following article :

theguardian.com/society/202...

These are side effects reported from the phase 3 trial :

What are the risks?

' There are significant side-effects with donanemab and they are similar to those seen with lecanemab. In the Eli Lilly trial, nearly a quarter of patients treated experienced some level of brain swelling or bleeding, compared with only 2% in the control group, though serious problems were rare. Four people died while taking part in the trial – three in the donanemab group and one in the control group. '

Benfotiamine is likely to be useful for people with PD via its ability to reduce advanced glycation end products by 40%, which is important because AGE is elevated in PD.

This study shows how AGE is elevated in PD :

pubmed.ncbi.nlm.nih.gov/324....

A relevant quote :

' It has become evident, that advanced glycation end products (AGEs) trigger the accumulation of such modified proteins, which eventually contributes to pathological aspect of NDDs. Increased levels of AGEs are found in amyloid plaques in AD brains and in both advanced and early PD (incidental Lewy body disease). '

This study shows how Benfotiamine reduces AGEs by 40% :

sciencedirect.com/topics/nu...

Here are two relevant quotes :

' Benfotiamine reduces advanced glycation end-products (AGE) by 40%, which has been shown to prevent macro- and microvascular endothelial dysfunction in individuals with type 2 diabetes.295-300 '

' Studies have shown that benfotiamine improves neuropathy scores significantly,301,302 increases nerve conduction velocity,303-305 and reduces HbA1c and pain.306 On the Russian market, it is one of the most studied drugs for neuropathic pain.306 In addition, it lowers inflammation and may be useful for ameliorating the analgesic effect of mu-opioid agonists on neuropathic pain.307-309 In a randomized, placebo-controlled, double-blind pilot study and phase III clinical study, investigators demonstrated a pronounced effect on the decrease in pain310,311 in conjunction with the previously described benefits. '

It is just my opinion, but I would go with benfotiamine over Donanemab for the purpose mentioned because it has other beneficial effects and does not cause brain swelling or death. I would just add other supplements to the benfotiamine that also offer anti AD or PD effects with it.

Art

[Michel0220 in reply to chartist]

Thank you very much for this Art. I have heard about Benfotiamine but I am not hugely familiar with it (I understand it is a lab-made version of vitamin B1). Definitely interesting!

[chartist in reply to Michel0220]

You're welcome, Michel !

Just imagine if they combined Benfotiamine with this common, but high dose probiotic combination which is inexpensive :

sciencedaily.com/releases/2...

And this :

ncbi.nlm.nih.gov/pmc/articl....

And this :

tandfonline.com/doi/full/10...

And other supplements that work to fight against AD. Perhaps a combination of 5 or 6 might be very effective and safe for long term use and these will also provide other health benefits. I maybe a dreamer, but I think it is doable relatively soon . These won't cause your brain to swell or cause you to die prematurely.

Art

[Michel0220 in reply to chartist]

I agree that the optimal solution might end up being a combination of different therapies. We might also see different combinations for different types of Parkinson’s. In the meantime, exercise remains one of the best therapies, together with nutrition and meditation!

[chartist in reply to Michel0220]

Take a look at the last study, it's just a case report, but look at the serious condition of the 90 year old woman. Scroll down to how the patient responded on the various cognitive test scoring. If they can turn her around that much and that quickly, just imagine what they can do with someone who is recently diagnosed.

Art

[b20000 in reply to chartist]

The study with 'Benfotiamine for Alzheimer’s disease was not statistically significant. The gold standard is .05 or less it was only p = 0.125. While is looks promising they need to run a larger study to determine side effects and if the Benfotiamine is truly a help.

ncbi.nlm.nih.gov/pmc/articl...

[chartist in reply to b20000]

The problem with those studies is that they are far and few between and the safety of benfotiamine is established especially when compared to the new drug. That is why I mentioned other adjunctive treatments that also have established safety profiles in humans. The idea being that the group may have synergy considering different methods of action, with the exception of FMT and the probiotic group. If you've already got AD, time is of the essence.

Art

[kevowpd in reply to chartist]

These undocumented 'synergies' are just as likely to accelerate ALZ decline as they are to slow it.

[chartist in reply to kevowpd]

So what is your solution?

Art

[kevowpd in reply to chartist]

I've not got one (nor does the rest of the society), but the idea that unproven protocols or interventions can only ever help (or be neutral) provided they follow naturopathic ideology is bogus. Anything that has the potency to help AD or PD also has the potency to hurt it, so treading carefully in the face of uncertainty is probably the best bet. I've lost a grandparent to PDD and before too long will lose a parent to it also, so i know all about the frustration, but i also know better than to shovel loads of supplements based on pure speculation.

[chartist in reply to kevowpd]

Each supplement has a study to support it's use for the purpose and all of them have very good safety profiles. Your choice is a legitimate choice as is mine for me. If I had AD and considering that the current choices are to just let the disease take its course and do nothing, I would choose to try them because I know where I am headed if I don't do anything.

Art

[kevowpd in reply to chartist]

I know where I am headed if I don't do anything.

Actually you don't know. The fact that you think you do may betray your lack of personal in-body experience with any of these diseases. You might know the end result (death) but you actually don't know the length of the path to it, or for how long you will be reasonably with-it, and so on. Despite what you might believe, it's not actually a 'well i might as well throw a hail mary pass here regardless the risks' situation. Your lingtime pal Roy Prop reported to this forum that his UDPRS score deteriorated ~4 years' worth in the space of ~2, all while taking loads of thiamine and goodness knows what else. For all we know that wouldnt have happened had he been more cautious.

[chartist in reply to kevowpd]

I respect your opinion, kevowpd, but frankly, I am not talking about Roy, I am saying it is my choice to make for myself. I have seen enough people die from AD to know, it is a horrible and very sad thing for the person, their family and friends to just watch them slip away until they no longer even recognize the people that they love.

A combination of supplements similar to the ones I mentioned helped a friend several years ago to regain lost cognitive ability and that was wonderful and she is still around and very sharp. She could have done nothing and continued to decline the way she was going, but she chose a different path that she , her friends and myself are all glad that she did so that we can still enjoy her company. She doesn't regret her choice for one minute and I would try to do the same for myself rather than do nothing.

Art

[kevowpd in reply to chartist]

I think it's obvious that you are free to make your own choices. Why wouldn't you be? But you don't post here in furtherance of that objective. You do so to steer people towards your ideology and consequently it seems reasonable to expect people to comment.

Your friend was having 'senior moments'. Please don't equate that to tauopathies or synucleinopathies. They are not the same thing.

I have seen enough people die from AD to know, it is a horrible and very sad thing for the person, their family and friends to just watch them slip away until they no longer even recognize the people that they love.

And none of the solutions you promote been shown to alter this positively, and as i said initially, may in fact accelerate this decline, for all we know. Hopefully you'd agree that an acceleration of the decline is a bad thing.

[chartist in reply to kevowpd]

You obviously didn't read the studies , but feel compelled to comment on them. They clearly show benefit. Not huge benefit, but benefit all the same.

Well, fortunately we can all have our own opinions and mine is that I would rather try than do nothing and you choose to do nothing. We clearly don't agree on this and that is fine.

I post information on this forum that I think might have value, what people do or don't do with it is their choice.

Art

[Gioc in reply to chartist]

Art nothing new under the sun. This reminds me of the priests of the religion in its heyday, that everyone had to believe in.

They were afraid of losing their monopoly on begging. That's why they sent their preachers to say: "If you don't do what we tell you to do, you will die!", but no one bought it; so they had to invent hell: "We will take you even after death and you will burn in hell forever..." they said, but no one believed them, again.

So they invented the inquisition and "witch hunt" to impose it by force. Everything collapsed and ended there because they denied the very principles with which they created their greatness.

Today's science looks more and more like a religion in which you have to believe that their research on mice has a value for humans, that you need to vaccinate the healed, that the P value =<0.05 is the sacred number of truth.

They send their preachers here to start the "witch hunt" with new modern denominations that is "conspiracy theorist", "no vax", "denier", with which to label anyone who shows the slightest objection to their "scientific" belief.

In reality they are just afraid of losing their monopoly on begging just like the ancient priests and just like them they will collapse for denying their founding principles.

All the signs that this will happen are there, hopefully it will be painless, that is all.

google.it/search?q=witch+hu...

the sun on CPHU never sets.

[Gioc in reply to b20000]

Statistically significant? All truth is established as a number: equal to or less than p=0.05.

But what do you write?

can scientific research be dismissed by an arbitrary statistical value that scientists themselves consider unreliable

nature.com/articles/d41586-...

Luckily or because there are still serious and prepared people that is not the case.

burke.weill.cornell.edu/gib...

[park_bear in reply to chartist]

>" reduces advanced glycation end-products (AGE) by 40%, which has been shown to prevent macro- and microvascular endothelial dysfunction"

Advanced glycation end products are the true cause of cardiovascular disease. Cholesterol is merely the patch material the body uses to attempt to deal with cardiovascular injury. I wrote about this at length here, with references to the medical literature:

A Tale Of Two Studies Leads To A Deeper Understanding Of Cardiovascular Disease tinyurl.com/y6agl45j

Advanced glycation and products are created by high temperature cooking of protein - anything that causes browning - details at above link.

[bpoe in reply to chartist]

long time reader, first time post......about the probiotic...I do not take because there is a confusing array of products/brands.......could you possibly recommend a brand? I'm already taking benfotiamine.

Thank you for posting this, Michel!

[Michel0220 in reply to bpoe]

Hi bpoe. I have been using Symprove (in the UK) for quite awhile with very good results.

They offer a substantial discount to members of Parkinson’s UK (which is free).

[bpoe in reply to Michel0220]

thank you, Michel...i am in the U.S. and currently taking Life Extension brand, but only 100MG....looking for 300 MG, most of 'brands' i look at which are 300 are 'off brand' and Fakespot website rates reviews (sellers) very poorly..i think 'Doctors Best' brand has a 300 mg dosage, but haven't been able to locate just yet

[Esperanto]

Therapy places a major strain on patients and the care system: 18 months of lecanemab / donanemab use means 36 outpatient visits for an infusion, six MRI scans, and at least an epidural or PET scan. This is separate from the cost of the product itself, expected to be 25 thousand euros per year.

Contrasting with the Benfotiamine supplementation such as Art promotes of about 100 euros per year, then it is clear that the commercial interests are (too) large. That for a remedy with a debateable effect.

[Dabaa]

Wait no more:

dailymail.co.uk/health/arti...

[park_bear in reply to Dabaa]

In case you didn't notice this is a combo of existing meds. No breakthrough here needless to say.

[mach262]

Nice to see something which looks good but some horrendous side effects and a massive financial burden on the health service if it ever reaches general release

[park_bear in reply to mach262]

And the benefit is only a fractional reduction in the rate of progression.

[Michel0220]

I agree. Let’s hope this is a first step in the right direction, with better and more affordable therapies to come in the future.

[Farooqji]

Donanemab in early symptomatic Alzheimer's disease - Infographic of the phase 3 trial data published by JAMA earlier today.

Highlights:

• No improvement

• ~3-point less worsening in iADRS (below MCID)

• 3.4% slower decline (not 35%!)

[Bolt_Upright]

Looks like the moment has already passed:

Effects of 'game-changing' new Alzheimer's drug are OVERBLOWN, top experts warn amid calls to speed up donanemab's approval

Donanemab can thwart the progression of Alzheimer's by a third, Eli Lilly said

Critics say figure is 'a bit of a mirage' and drug's effects may not be noticeable

dailymail.co.uk/health/arti...

[chartist in reply to Bolt_Upright]

Their noticeable if you are one of the ones who die from it or get the brain swelling!

Art