How many of you are taking metformin off-label to promote remyelination? Did you know that metformin has recently been linked to major congenital malformations?
I tried simvastatin- my neurologist recommended it because my cholesterol was high (220). I was the one who asked about using it also for SPMS, as I had seen the study you included in your selfie.
I couldn't tolerate the simvastatin 80mg (or even Pravastatin) because I experienced muscle weakness which made walking even harder than usual. This was even with premedicating with Coenzyme Q10 as recommended by my neurologist.
I am curious, for all those PWMS who biohack like this, are they also changing their lifestyle? Ie food, movement, stress and sleep. If not, it just seems futile. My biohacking is following a very anti inflammatory lifestyle as prescribed in OMS. I also am eliminating grains. I have learned chess to help cognition. I walk 10, 000 steps daily. I drink 70 fluid ounces of clean water. I am chronologically 54 but participated in MS study of biologic age and mine is 48! I also work with a functional medicine practice who through blood labs identified elevated EBV antibodies and prescribed Thymosin Alpha One. I feel so much better! They are also helping me improve gut health. Finally, my neurologist agreed to try LDN. I am currently starting a new job and look forward to the future. I have a zest for life, though I still have bad days and have moments when mobility is very poor. But I feel good about my trajectory. Thank you Dr. G!
As I understand it, the risk/reward calculation to be made in taking Simvastatin is between a – speculative – negative impact on cognition, and the established one as a result of disease progression in MS. Given that the Phase II results are notably encouraging, it feels fairly sensible to me that my GP has been happy to prescribe the trial dose to me off-label. There may only be a year or so to wait for definitive results, but as you know well, time is brain, so I'm happy to take the possible risk.
I have often wondered whether amphetamines could help with MS fatigue (in the same way that I know they are used in the military) and whether cannabis could help with MS anxiety and pain. That makes me sound like a drug user with a serious habit but I am a middle aged housewife from the home counties. I don't like to bother the MS nurse or GP unless I really can't cope. I have only just gone onto HRT.
I must say it would never occur to me to take a prescription drug without a Dr approval. As for buying drugs on the Internet ...I even hesitate buying cosmetics unless from that firm's official site! Who knows what you're buying!! There's so many fake stuff I hope Metformin will be proven successful, maybe for people who are past child bearing age? In the meantime I keep to what someone who has studied this for years recommends. Interesting to see how the Internet has suddenly turned every one into an expert . Ignorant and arrogant I think.
Following the Chataway et al paper, I have been prescribed Simvastatin 80 mg daily off label, by my GP following guidance of my neurologist (initially my request) for approx 5 years with no side effects and minimal progression of my secondary progressive MS. As an informed individual, I was not willing to wait several years for the results of Phase 3. Study as Simvastatin already tried and tested, for many years for high cholesterol. Two other individuals I have suggested this to have not been able to tolerate due to Muscle cramps. (But both pleased they tried)
Thus Simvastatin had a positive impact on my life and see no harm in offering to individuals like myself on a trial basis as there is little else out there. I’m very interested in the results of Metformin trials which will also hopefully provide hope!
There is something else that everyone should be aware of and be careful of its implications. The websites of article mills, like Multiple Sclerosis News Today, which pays article writers to write articles based on things that they’ve read themselves but haven’t verified very well. I have found many articles about companies with products being tested for remyelination, as well as nerve repair. But when I did my own research on the companies they actually turned out to be fake, and the articles were based on articles the companies published as a means of pumping up interest in their own stocks on the stock market. Not only is this dangerous and that it could give bad information to people who may try to take things upon themselves, but it also gives people with few options false hopes.
I did research over 10 years ago for many years on low dose naltrexone but I never tried it because the trial results never rose above the level of the plethora of published anecdotal evidence. I also personally tried using high-dose biotin to see if it might help with remyelination in progressive MS. But again another failure has it only ever just made my nails and hair grow faster and had a small effect on urinary control. Actually there is a really good article in the Lancet on the trials of biotin in remyelination in Progressive MS. I have tried to find products, supplements, pharmaceuticals and nutraceuticals to help me biohack my disease. But I also tried to take as much time as possible to research the things I intend to use, sometimes taking years. And like with the biotin, with the help and blessings of my primary care doctor had his own research as well.
Apr 11, 2022·edited Apr 11, 2022Liked by Gavin Giovannoni
B12 is my extra drug of choice. The GP will grudgingly allow me an injection every 10 weeks for a B12 deficiency ( not for my MS). However I inject every week to ten days, with hydroxocobalamin bought in Europe where it is available over the counter as opposed to being a prescription only medication as it is in this country. Makes a huge difference to fatigue levels, improves pins, needles and numbness in my feet and keeps my restless legs calm at night. Was previously taking gabapentin for the restless legs but no need now with extra B12 injections. For me swapping a controlled drug that made me feel groggy for a vitamin is a big win. Along with diet and exercise I feel it helps hugely.
I can say undoubtedly that ten years of statin use contributed to huge blood brain barrier issues and cognitive trouble in my case.
I actually stopped my statin cold turkey during my first terrible flare as an undiagnosed person. I read up on what they do, and what myelin is made up of, and although I see “why” they are trialling for MS, the collateral damage IMO is oppositional.
Since 2018 I’ve been biohacking with an ND - personalized medicine, addressing insulin resistance, poor sat fat genetics and thus cholesterol issues. Low stomach acid and terrible gut microbiome. My overall inflammation is now better than it’s been in decades - as is my weight. Biohacking with diet and lifestyle makes a whole lot more sense than using off label drugs for me - even my ND wanted me on metformin at one point! Thankfully I have an anaphylactic allergy to an inert that is in every form of metformin available to me. So I had to go in other directions.
This, combined with the RIGHT DMT (for me - Mavenclad) and proper thyroid care - my “permanent” 2017 self - I barely recognize now.
Apr 11, 2022·edited Apr 11, 2022Liked by Gavin Giovannoni
I take metformin, n-acetyl glucosamine, r-ALA, B12, D3, and some sort of blend of powdered mushrooms. I tried clemastine fumarate at night but found the lingering grogginess hard to handle.
It makes me nervous to choose supplements without my doctor endorsing them, but I feel stuck given her refusal to discuss likely risk/reward. It seems unlikely, for example, that a simple sugar from shellfish will do any harm.
My bio-hack is testosterone injections and NAD+ injections. My neurologist is aware and ok with it. I’m a 36 Male and I feel the testosterone has made a difference.
I've taken clemastine off-label for two years and then wondered about the risks on cognition of taking a medication that has anticholinergic properties and went off it. I've also taken off label estradiol a long time ago, again, not sure that was a good idea. Additionally I've self-infected myself with hookworms. Then took something to eliminate those before starting alemtuzumab in 2019. So definitely have done the self-experiementation. All-in-all, I am not sure any of it was a great idea though probably the hookworms were the least bad idea based on the research of those three things.
I am generally unable to point to the “reason” for my MS not “being so bad”, and that includes Simvastatin at the prescribed dose of 40 mg for the last almost 20 years (for cholesterol). I could run through onset and exacerbations, wheel chair use, MRI (and X-ray) results over the long term, and easily convince you I have MS. It was quite troubling in the mid 90’s. After 2002, all NEDA. Atrophy? They tell me some. Silent progression? Not that I notice. You basically can’t tell from the outside now, and from the inside, keep a cane and diaper handy for long hauls. Compare me to 1995 and it is like day and night.
Starting back when there was no FDA modifying MS treatment- at first I had all amalgam fillings removed (and there were plenty), and went on a strict Swank diet. Started Betaseron when it arrived. Enter intravenous steroids strategically used (at home) within 5 days of relapse onset (that continued for 4 years). Usage as such was explained as a possible DMT. (Cousin, “pristine” lifestyle unlike me, different doctor, has MS too, no DMT, more steroids used in a different context, but overall a similar outcome (?). I continued Betaseron for 23 years like clock-work (never a missed shot), despite being told I had interferon antibodies in 2007. (I think Dr. G was an author of a study which pretty much nullified use of interferons if one had antibodies.) I did things we are told not to do- like smoked and partied (sometimes heavy) on weekends. And yes, since about 2007, Simvastatin. I don’t know what led to a relative positive outcome (I am 64 now). Is there a dose effect to Simvastatin? I know the MS experimental dose is 80 mg, but I am a relatively small, versus large, person. Cholesterol has been fine, though, for a long time. I still take the Simvastatin (with MS in mind), and waiting for the study results.
But I don’t know what has helped me, if any of it.
I tried simvastatin- my neurologist recommended it because my cholesterol was high (220). I was the one who asked about using it also for SPMS, as I had seen the study you included in your selfie.
I couldn't tolerate the simvastatin 80mg (or even Pravastatin) because I experienced muscle weakness which made walking even harder than usual. This was even with premedicating with Coenzyme Q10 as recommended by my neurologist.
I am curious, for all those PWMS who biohack like this, are they also changing their lifestyle? Ie food, movement, stress and sleep. If not, it just seems futile. My biohacking is following a very anti inflammatory lifestyle as prescribed in OMS. I also am eliminating grains. I have learned chess to help cognition. I walk 10, 000 steps daily. I drink 70 fluid ounces of clean water. I am chronologically 54 but participated in MS study of biologic age and mine is 48! I also work with a functional medicine practice who through blood labs identified elevated EBV antibodies and prescribed Thymosin Alpha One. I feel so much better! They are also helping me improve gut health. Finally, my neurologist agreed to try LDN. I am currently starting a new job and look forward to the future. I have a zest for life, though I still have bad days and have moments when mobility is very poor. But I feel good about my trajectory. Thank you Dr. G!
As I understand it, the risk/reward calculation to be made in taking Simvastatin is between a – speculative – negative impact on cognition, and the established one as a result of disease progression in MS. Given that the Phase II results are notably encouraging, it feels fairly sensible to me that my GP has been happy to prescribe the trial dose to me off-label. There may only be a year or so to wait for definitive results, but as you know well, time is brain, so I'm happy to take the possible risk.
I have often wondered whether amphetamines could help with MS fatigue (in the same way that I know they are used in the military) and whether cannabis could help with MS anxiety and pain. That makes me sound like a drug user with a serious habit but I am a middle aged housewife from the home counties. I don't like to bother the MS nurse or GP unless I really can't cope. I have only just gone onto HRT.
I must say it would never occur to me to take a prescription drug without a Dr approval. As for buying drugs on the Internet ...I even hesitate buying cosmetics unless from that firm's official site! Who knows what you're buying!! There's so many fake stuff I hope Metformin will be proven successful, maybe for people who are past child bearing age? In the meantime I keep to what someone who has studied this for years recommends. Interesting to see how the Internet has suddenly turned every one into an expert . Ignorant and arrogant I think.
Following the Chataway et al paper, I have been prescribed Simvastatin 80 mg daily off label, by my GP following guidance of my neurologist (initially my request) for approx 5 years with no side effects and minimal progression of my secondary progressive MS. As an informed individual, I was not willing to wait several years for the results of Phase 3. Study as Simvastatin already tried and tested, for many years for high cholesterol. Two other individuals I have suggested this to have not been able to tolerate due to Muscle cramps. (But both pleased they tried)
Thus Simvastatin had a positive impact on my life and see no harm in offering to individuals like myself on a trial basis as there is little else out there. I’m very interested in the results of Metformin trials which will also hopefully provide hope!
Thank you Prof G for raising this issue.
There is something else that everyone should be aware of and be careful of its implications. The websites of article mills, like Multiple Sclerosis News Today, which pays article writers to write articles based on things that they’ve read themselves but haven’t verified very well. I have found many articles about companies with products being tested for remyelination, as well as nerve repair. But when I did my own research on the companies they actually turned out to be fake, and the articles were based on articles the companies published as a means of pumping up interest in their own stocks on the stock market. Not only is this dangerous and that it could give bad information to people who may try to take things upon themselves, but it also gives people with few options false hopes.
I did research over 10 years ago for many years on low dose naltrexone but I never tried it because the trial results never rose above the level of the plethora of published anecdotal evidence. I also personally tried using high-dose biotin to see if it might help with remyelination in progressive MS. But again another failure has it only ever just made my nails and hair grow faster and had a small effect on urinary control. Actually there is a really good article in the Lancet on the trials of biotin in remyelination in Progressive MS. I have tried to find products, supplements, pharmaceuticals and nutraceuticals to help me biohack my disease. But I also tried to take as much time as possible to research the things I intend to use, sometimes taking years. And like with the biotin, with the help and blessings of my primary care doctor had his own research as well.
B12 is my extra drug of choice. The GP will grudgingly allow me an injection every 10 weeks for a B12 deficiency ( not for my MS). However I inject every week to ten days, with hydroxocobalamin bought in Europe where it is available over the counter as opposed to being a prescription only medication as it is in this country. Makes a huge difference to fatigue levels, improves pins, needles and numbness in my feet and keeps my restless legs calm at night. Was previously taking gabapentin for the restless legs but no need now with extra B12 injections. For me swapping a controlled drug that made me feel groggy for a vitamin is a big win. Along with diet and exercise I feel it helps hugely.
I can say undoubtedly that ten years of statin use contributed to huge blood brain barrier issues and cognitive trouble in my case.
I actually stopped my statin cold turkey during my first terrible flare as an undiagnosed person. I read up on what they do, and what myelin is made up of, and although I see “why” they are trialling for MS, the collateral damage IMO is oppositional.
Since 2018 I’ve been biohacking with an ND - personalized medicine, addressing insulin resistance, poor sat fat genetics and thus cholesterol issues. Low stomach acid and terrible gut microbiome. My overall inflammation is now better than it’s been in decades - as is my weight. Biohacking with diet and lifestyle makes a whole lot more sense than using off label drugs for me - even my ND wanted me on metformin at one point! Thankfully I have an anaphylactic allergy to an inert that is in every form of metformin available to me. So I had to go in other directions.
This, combined with the RIGHT DMT (for me - Mavenclad) and proper thyroid care - my “permanent” 2017 self - I barely recognize now.
I take metformin, n-acetyl glucosamine, r-ALA, B12, D3, and some sort of blend of powdered mushrooms. I tried clemastine fumarate at night but found the lingering grogginess hard to handle.
It makes me nervous to choose supplements without my doctor endorsing them, but I feel stuck given her refusal to discuss likely risk/reward. It seems unlikely, for example, that a simple sugar from shellfish will do any harm.
My bio-hack is testosterone injections and NAD+ injections. My neurologist is aware and ok with it. I’m a 36 Male and I feel the testosterone has made a difference.
Thank you. Very, very interesting. Hope you cover the trial results when they are first (informally?) available.
I've taken clemastine off-label for two years and then wondered about the risks on cognition of taking a medication that has anticholinergic properties and went off it. I've also taken off label estradiol a long time ago, again, not sure that was a good idea. Additionally I've self-infected myself with hookworms. Then took something to eliminate those before starting alemtuzumab in 2019. So definitely have done the self-experiementation. All-in-all, I am not sure any of it was a great idea though probably the hookworms were the least bad idea based on the research of those three things.
Hi I need to speak to biohacker if at all possible
I am generally unable to point to the “reason” for my MS not “being so bad”, and that includes Simvastatin at the prescribed dose of 40 mg for the last almost 20 years (for cholesterol). I could run through onset and exacerbations, wheel chair use, MRI (and X-ray) results over the long term, and easily convince you I have MS. It was quite troubling in the mid 90’s. After 2002, all NEDA. Atrophy? They tell me some. Silent progression? Not that I notice. You basically can’t tell from the outside now, and from the inside, keep a cane and diaper handy for long hauls. Compare me to 1995 and it is like day and night.
Starting back when there was no FDA modifying MS treatment- at first I had all amalgam fillings removed (and there were plenty), and went on a strict Swank diet. Started Betaseron when it arrived. Enter intravenous steroids strategically used (at home) within 5 days of relapse onset (that continued for 4 years). Usage as such was explained as a possible DMT. (Cousin, “pristine” lifestyle unlike me, different doctor, has MS too, no DMT, more steroids used in a different context, but overall a similar outcome (?). I continued Betaseron for 23 years like clock-work (never a missed shot), despite being told I had interferon antibodies in 2007. (I think Dr. G was an author of a study which pretty much nullified use of interferons if one had antibodies.) I did things we are told not to do- like smoked and partied (sometimes heavy) on weekends. And yes, since about 2007, Simvastatin. I don’t know what led to a relative positive outcome (I am 64 now). Is there a dose effect to Simvastatin? I know the MS experimental dose is 80 mg, but I am a relatively small, versus large, person. Cholesterol has been fine, though, for a long time. I still take the Simvastatin (with MS in mind), and waiting for the study results.
But I don’t know what has helped me, if any of it.