Add Idebenone Back to my Stack? - Cure Parkinson's

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Add Idebenone Back to my Stack?

Bolt_Upright profile image
24 Replies

I used to have Idebenone in my stack of supplements to prevent progression from REMSBD to PK, but I removed it because it was being trialed for that purpose but the results were not in yet (they trial lots of things).

Then today I found this:

In our study, idebenone

suppressed the “proinflammatory” M1 phenotype, while

enhancing the “anti-inflammatory” M2 microglia phenotype in

the SN and striatum after MPTP administration. Our findings

revealed that the anti-inflammatory effects and modulation

of M1/M2 polarization by idebenone contributed to the

survival of TH+neurons in the MPTP-induced PD model.

We attempted to identify the underlying mechanism that

inhibits M1 polarization and promotes M2 polarization in vivo.

Consistent with in vitro study, idebenone suppressed the

phosphorylation of ERK, p38, JNK, and NF-κB in the SN of

MPTP-treated animals. These data suggested that idebenone

could inhibit M1 polarization and promotes M2 polarization

by modulating the MAPKs and NF-κB signaling pathway

in vivo.

Our work reveals a new insight into idebenone

neuroprotection. Idebenone could attenuate the

proinflammatory cytokines expression, and promote the

phenotypic shift of microglia from the M1 to M2 phenotype

in LPS-activated BV2 cells and the MPTP induced PD model.

Mechanistically, these effects of idebenone may be mediated by

inhibition of the MAPK and NK-κB pathway. Taken together, the

present data suggested that the preventive potential of idebenone

as a novel anti-inflammatory and microglia-modulating drug for

neurodegenerative diseases associated with neuroinflammation,

such as PD.

researchgate.net/publicatio...

24 Replies
Rhyothemis profile image
Rhyothemis

Did you notice a difference when you discontinued? Do you keep a symptom diary or use a sleep tracking device?

Bolt_Upright profile image
Bolt_Upright in reply to Rhyothemis

My challenge is I felt as good as I have ever felt in my life on April 2nd when I was diagnosed with REM Sleep Behavior Disorder. The supplements are intended to prevent progression to LBD or PK.

So... no. I did not notice any difference when I stopped taking it :(

Rhyothemis profile image
Rhyothemis in reply to Bolt_Upright

So you feel restored after sleeping, not tired during the day?

If you can afford it then maybe research whether a sleep tracking device can be used to see if your interventions help normalize your sleep patterns.

I think you are on the right track with trying to nip things in the bud, but exactly how to do that is another question which is difficult to answer. Since your quality of life is good I would go for low risk interventions like sauna bathing. I always worry about contaminants with supps. I currently take 200 mg of ubiquinone daily and back before it got ridiculously expensive I took MitoQ. I do notice a difference in dysautonomia symptoms if I stop taking it for more than a few days.

I keep hoping that Life Extension will offer direct to consumer neurofilament light chain testing for a reasonable price.

Bolt_Upright profile image
Bolt_Upright in reply to Rhyothemis

Well now I sleep all day because I'm depressed. But before the diagnosis I had no issues popping up in the morning. My REMSBD was fairly minor. Now it is practically non-existent.

I have switched to the Specific Carbohydrate Diet, and I intermittent fast every day. I think these are both good things.

Good luck with the things you are doing.

Bolt_Upright profile image
Bolt_Upright in reply to Rhyothemis

One thing I DID notice when taking 45 mg of Idebenone was my vision improved. I wear reading glasses but was able to read from a book without my glasses while taking Idebenone.

park_bear profile image
park_bear in reply to Bolt_Upright

How long did that take?

Bolt_Upright profile image
Bolt_Upright in reply to park_bear

Not very long. Maybe a couple of weeks. It was quite surprising. I kept using glasses, but if I HAD to, I could read without them (which was different).

chartist profile image
chartist in reply to Bolt_Upright

Bolt,

I think Idebenone is used in Europe for optic neuropathy. Melatonin has shown benefit in this area also. Did the visual benefit stop when you stopped Idebenone or did it continue indefinitely?

Idebenone is thought to have very poor bioavailability of less than 1%. I wonder if it is a substance that can benefit from co-use of bioperine/piperine? At less than 1% bioavailability, a little boost to bioavailability would possibly be useful.

Art

Bolt_Upright profile image
Bolt_Upright in reply to chartist

I can't be sure the visual benefit was coming from the Idebenone, but yes that benefit did seem to go away after I stopped taking it. I am back on it now so we will see if it comes back.

Great point on bio-availability. Here is a great video with some doctors talking about Idebenone and they say to take it with fatty food and it is 5 times more bio-available: youtu.be/FTlmfVmPXCc

chartist profile image
chartist in reply to Bolt_Upright

They are talking about a very expensive dosing regimen if they are starting at 900 mg and moving upward from there. Then there is the potential for liver failure which they casually brushed over. That video is almost 6 years old, have they updated on how their research has gone?

On the contrary, melatonin has shown itself to have liver protective properties I would try melatonin at 1/4 th of the dose before I would try Idebenone for optic neuropathy.

europeanreview.org/article/...

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

pubmed.ncbi.nlm.nih.gov/314...

pubmed.ncbi.nlm.nih.gov/194...

Art

Bolt_Upright profile image
Bolt_Upright

Idebenone: When an antioxidant is not an antioxidant

January 2021

researchgate.net/publicatio...

This article has some really interesting points to make about Idebenone and neuro regeneration (if I understood it).

kevowpd profile image
kevowpd

How old are you, out of interest?

You seem to be devoting a lot of energy to questionable means of preventing something that might not happen even if you ignore it.

Id be inclined to eat well, exercise frequently and live your life.

Bolt_Upright profile image
Bolt_Upright in reply to kevowpd

Thanks, I get that a lot. I am 61 years old. My neurologist flat out told me that I would eventually have PK or LBD. And he basically told me it was my fault (I used to drink more than I should have).

I am really trying to get back to where I was 3 months ago. Living my best life ever. Physically I am fine. I even stopped the REMSBD with the melatonin and NAC and Glycine.

Anyway, thank you for the good advice. I will really try and take it to heart.

Rhyothemis profile image
Rhyothemis in reply to Bolt_Upright

PK? FWIW I have never seen an epidemiological study showing increased risk of PD with alcohol consumption.

TiredNRetired profile image
TiredNRetired in reply to Rhyothemis

Yes, RBD is highly suggestive of an eventual neurodegenerative disease of PK, LBD or MSA and PK the most likeliest. We don’t know what causes it that’s why it’s termed idiopathic. Alcohol is a known neurotoxin. Most people don’t have a history of obvious exposure to things such as Paraquat. Employing potential disease modifying strategies BEFORE extensive neuronal damage has occurred makes good sense.

Rhyothemis profile image
Rhyothemis in reply to TiredNRetired

Have you seen the Leisure World study results: pubmed.ncbi.nlm.nih.gov/173...

Alcohol consumption has been found to be associated with younger age of onset for MSA, but I have not found anything on MSA incidence, and no associations for PD.

Binge drinking seems unwise, as does drinking alcohol with contaminants (methanol).

Bolt_Upright profile image
Bolt_Upright in reply to Rhyothemis

Thank you Rhyothemis. Have you seen the B3 thread? Good news?

Rhyothemis profile image
Rhyothemis in reply to Bolt_Upright

You're welcome. I have not seen a recent B3 thread, but am aware of niacin for both boosting NAD+ and also its interaction with GPR109A (nicotinic acid form only).

There's been some good news lately, a number of potentially quite effective treatments for neurodegeneration and even aging itself that are being developed that may become available within 5-10 years.

Anyway, I don't know if alcohol is contraindicated once one does have Parkinson's or related illnesses, so I don't know if one should stop consuming it once it is suspected / in prodrome. But I would not blame past drinking for causing the illness.

I don't drink since I have mast cell problems and alcohol sets off mast cells (allergy-type issues).

Alcohol could potentially cause sleep disturbance & could interact with medications.

Rhyothemis profile image
Rhyothemis in reply to Bolt_Upright

This just came in on my twitter feed (posted by @ScienceofPD, Simon Stott) nature.com/articles/s41598-...

" Similarly, increased alcohol intake had a protective effect over PD risk, with the alcohol dehydrogenase 1B (ADH1B) locus as a potential candidate for further investigation of the mechanisms underlying this association."

Bolt_Upright profile image
Bolt_Upright

Idebenone Ameliorates Rotenone-Induced Parkinson’s Disease in Rats Through Decreasing Lipid Peroxidation

researchgate.net/publicatio...

Bolt_Upright profile image
Bolt_Upright

This trial is using 90 mg of Idebenone a day: clinicaltrials.gov/ct2/show...

I'm sure there was another trial where they were using 180 mg a day but I can't find it.

Bolt_Upright profile image
Bolt_Upright

I found the other trial. They were using 180 mg and 360 mg (then down to 180)

clinicaltrials.gov/ct2/show...

rainier profile image
rainier

N to v

Bolt_Upright profile image
Bolt_Upright in reply to rainier

N to v?

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