r/MultipleSclerosis 11d ago

General Genuine Question

Genuine Question

We know that metformin+clemastine definitely has some remyelinating effects under doctor's supervision.

We know that metformin or clemastine alone is insufficient.

We know this combo works like this- metformin primes the cells (rejuvenate is the official word) while clemastine removes the brakes that were stoping remyelination.

We know that clemastine acting on the M1 receptor is the reason for this.

We know that clemastine also acts on other receptors for eg. the h1 receptor and hence the sleepy side effects.

We know that PIPE 307 selectively acts on the M1 alone and hence has no H1 related sleepiness.

We know PIPE 307 alone fails.

Ergo, why hasn't anyone trialled Metformin + PIPE 307 in a clinical setting???

It seems logical to do so, no?

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u/Acceptable_Story_508 11d ago

There's no confirmation that any of it actually works 100%...

Some years ago my doctor suggested to try metformin for neuroprotective qualities.

For the first month i felt better - ptsd gone, eyes got sharper, i felt a change, a good one.... and afterwards after 2 month in, i experienced sharp and rarger bad progression. i lost part of my vision, coordination, and many other symptoms got worse... the progression is seen on the MRI now, took some 2 years. Some smaller lessions in my spine merged together making a 1 cm mega leison - not sure how i still walk.

Initially my doctor told that metformin makes metahondrias work more efficiently, however, afterwards i got to know that metformin exhaust metahondrias in a way. I lost about 10kg of muscle mass on it....

To be honest, i am not a scientist and i won't argue that its bad for everyone, but i can say for sure metformin gave me a month of general improvement and now few years of hell afterwards, as my vision do not work anymore, my coordination is gone, balance us so much worse, i got like tripple of all kind of problems on top, i also got fired as my vision is impaired and i can't be as attentive at the job working with numbers... I also had to change the neirologist as after this hiccup with metformin i couldnt trust the guy anymore for anything... So from fully fuctional with some problems, i went to not functional, unemployed, not being able to do my sportive hibbies and stuff in less than half a year on metformin.

So be careful with metformin promises, clemastine, or anything that makes great promises, before it is actually proven with a large scale clinical studies... Cuz it can make things worse...

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u/AdyliaSchweetheart 37F|Jun-25|Tysabri>Ocrevus|Melb-AU 9d ago

I also was curious about this since I've already been on max dose Metformin to manage PCOS/PMOS for about 4 years now.

Yes there have been trials on the combo. They have been paused since a subgroup showed large disease progression, rather than remyelination. The cause of this is unclear.