Barts-MS rose-tinted-odometer: ★★ (Monday feels like an orange day; an orange cocktail day)
“I can’t wait for the next MS breakthrough; it will take 10-15 years to reach the clinic. I have smouldering MS and I need to do something about it now. Tell me Gavin what would you do if you were in my situation ?” PwMS
I have just had a call with a person with MS who I know very well. This person is not a patient of mine but he was asking me honestly what should he do about maximising his chances of doing well. He has been reading my recent blog posts and feels he needs to do something about his MS. He said he doesn’t want to have any regrets.
In summary, he is middle-aged (49 years of age) and was treated with dimethyl fumarate for 6 years and was switched to ocrelizumab shortly after it was licensed. The switch was not because of breakthrough disease activity; he just thought he needed to be treated with a more effective DMT and the private neurologist who he saw recommended against having HSCT or alemtuzumab. He remains relapse and MRI disease activity free but has noticed his left leg dragging after walking long distances. His memory is not as good as it was in the past and he suffers from cognitive fatigue. He just knows he is getting worse regardless of what his EDSS and MRIs are showing. He knows he has early SPMS or smouldering disease.
What should he do?
In the past I have always told my patients I am an academic and I can’t recommend X or Y because the evidence is just not good enough that they will make a difference. I also don’t want to be viewed as the MS expert who is recommending off-label or unproven therapies. The line between being an evidence-based practitioner and a quack is a fine line.
Do I tell him to hang in there and wait for an evidence-based therapy to emerge or do I give advice about things that may make a difference? If I did give him advice would a scientific rationale be enough (preclinical data) to support my position or should my advice be based on data from preliminary trials in people with MS? Do you think it is irresponsible to give generic advice on managing smouldering MS? Finally, do any of you have advice on how you are self-managing your smouldering MS?
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.
If he has SPMS, why don’t you recommend that he switches to siponimod?
He won’t be able to switch as he would have inactive SPMS. Siponimod can only be used in patients with active SPMS.
Do you think siponimod will really be better than ocrelizumab in this situation?
Completely understand the dilemma, but as someone in the same position as the person you describe, I would welcome some informed suggestions, which I could then consider to give me more agency over my disease.
The answers to this question are in the 100’s of other blog posts I have done on this topic before. I will do a specific blog post summarising my position in the near future.
I’m in a very similar position and becoming increasingly scared that we are just left to wilt away over time. I have found great improvements in energy levels by changing my diet and practicing yoga but am fully aware that this isn’t changing what’s happening inside me!
Do you think any stem cell therapy (I think I’m past the HSCT window) are likely to be helpful to people like us?
Keeping my fingers crossed for a remyelination break through in my life time!
I think diet is critical.
“Do you think any stem cell therapy (I think I’m past the HSCT window) are likely to be helpful to people like us?”
You may be beyond the full repair window…but to just stop progression before full wheelchair…people do it at edss 5-6. As it’s easier to just stop progresssion than full repair.
Has he looked at lipoic acid? Small scale study but the results on brain volume loss sound promising. Anything is worth a go…
Lipoic acid is a good one, which is why it is top of our list for add-on neuroprotection. I am told that some people can’t tolerate it due to gastrointestinal side effects.
Lipoic Acid is ALA right? If so it is found in flaxseed oil…1 tablespoon of flaxseed oil is meant to contain around 7 grams which would be more that enough if I understand correctly…might be a much easier way for people to stomach it as it can be mixed into foods such as smoothies and soups. N.B. mustn’t be used for cooking and should be kept in fridge as it can go off quite quickly.
Apologies, I got it wrong, flaxseed oil has Alpha Linolenic acid in it, not Alpha Lipoic acid…from what I understand you can only get a high enough dose to have any potential effect in supplement form. I’m going to have a look into it…the studies into reducing brain atrophy look promising…would probably think about starting on a lower dose and working my way up over a course of several weeks to the higher dose. Here is a link to the MS Society’s page if anyone wants some further reading on it:
https://www.mssociety.org.uk/research/explore-our-research/emerging-research-and-treatments/explore-treatments-in-trials/lipoic-acid
Having had MS for 27 years I have always gone with professional advice but supplemented that with my own knowledge of my body plus non-evidence-based supplements or activities that feel right alongside my own understanding of my disease so I would welcome professional “advice” or more over a glace towards an area of interest which sound promising. There is a lag with what you a professional can say and what you know and that lag can make a real difference.
” Finally, do any of you have advice on how you are self-managing your smouldering MS? ”
Finding a good neurologist is essential, a doctor with whom you can talk normally, present him with some new / promising research results, current research, results regarding already available drugs – and on this basis try to “negotiate” the suggested therapy. Nevertheless, I know from my experience that it is very difficult to require a neurologist to take the risk associated with the use of a drug whose use in MS has not yet been widely researched, understood, etc.
Most often, for neurologists, anything that exceeds the accepted standards of treatment, or is burdened with any additional risk, stress, work, is rejected and is not offered to patients.
For several weeks I have been trying to convince neurologists to use “experimental” TAF, financed from my own pocket. Despite the presentation of research results, medical cases of people using TAF / HAART in MS, a very safe safety profile, and the ongoing research on Ocrelizumab + TAF. I get the answer that you need to report it to the bioethics committee in order to use the drug outside its medical indications and “they don’t want to do it, because it takes a long time, there are clergymen, philosophers in the council and it is difficult to write it in such a way that everyone understands it”.
“The line between being an evidence-based practitioner and a quack is a fine line. ”
It seems to me that pwMS, which bumps into more old-fashioned neurologists who are not up to date with current trends in MS treatment and ongoing research, also feel like a “quack” in a way, it is very difficult to convince a neurologist to do something if he himself he was not familiar with it before.
We should not forget that in recent years people with MS have more and more decision-making (related to the greater number of therapies available on the market) and they should have the most important voice in the matter of treatment, here the brain is at stake , physical and mental disability, life-long mental consequences of undertreating this awful disease.
I showed one neurologist the results for brain atrophy from the Ocrevus study results, and the PIRA-related post-hoc analysis, he concluded that it did not matter and that Ocrevus was the best drug and I should focus on stopping relapses.
Cheers,
You can get TAF from indian online pharmacies… or you can get it in other ways, but it’s crazy expensive in the EU. I would try the online indian pharmacies first
Yes, I have already contacted these indian pharmacies, however to import the drug into EU you need an import allowance which is given based on the prescription from the doctor. I will need to have a doctor prescribe it to me otherwise the customs service will stop it.
Another thing is that I would prefer to actually have a neurologist who is aware that I am taking other medications and who would help me with monitoring, controls etc.
I agree that TAF / HAART need to be tried in MS, but as part of a trial. If we don’t do proper trial we will have no idea if they really work or not.
I’ve done peptides, Ta1, Tb4, CJC/Ipamorelin, BPC-157, Autologous MSCs (Celltex), LDN, Young fresh frozen plasma, CBC/THC and tons of suppliments. Some help more than others but I feel that I have been able to remain mostly stable over the years. I’m male, 58 Dx 5 years ago.
Also need to add that i’ve done AHSCT in 2016 shortly after I was Dx.
Which peptides did you find most helpful? So far I’ve experimented with BPC-157 (noticed nothing), Selank (impressive acute anxiolytic effects, sustained improvements in mental health after stopping), and Semax (noticed nothing). I’m currently doing a course of Dihexa (very impressive short-term cognitive improvements, unsure yet if anything in the long term). Next looking into trying ipamorelin and tb4 in combination with BPC-157. Also had alem and take all the usual supplements.
The CJC/Ipamorelin did the most good to help strength.
The CJC/Ipamorelin did the most good. It really helped strength.
Ooo – never ask for advice.
That’s the first piece of advice.
“Advice” is a legal term and has all sorts of legal and ethical and moral repercussions. To an almost insane degree, an advisor is legally responsible for the advice they give. An advisor is legally required to offer advice that is not in your best interest if the alternative is more risky or unproven or “not the received consensus”.
So after you’ve asked for advice (as you will anyway) – then ask the next question:
“All things being equal, with everything you know, with no comeback or responsibility for anybody else’s decision making, if you were in my shoes and willing to take a greater risk for a greater reward – what would YOU be doing?”
That’s a very different question with very different answers…
Luckily I’m NOT a healthcare practitioner having been strictly warned away as a child by my GP father (thanks dad).
I take metformin off label on top of my ocrevus. I probably won’t know if it’s doing anything for a couple of years yet – hopefully it is.
Metformin is a nother one that needs to be tested in MS as part of a trial. Unless we test it in randomised trials we won’t know if it works or not.
Hello, I was on Metformin a year before I was diagnosed with MS…I loved how I felt on it.
was there a feeling of improvement…a feeling of youth?
Luck you, a friend of mine taking Metformin on top of Teri isn’t feeling anything.
This blog is a fraud, it doesn’t exist because of the patients, it exists because of the inetresses of the blog itself, that is, that FDP rat. (search in portuguese “FDP”). Lucky for you I’m not there, how can you feel I still have the capacity to get angry.
I dont even have to get Luis to translate that one
Do I tell him to hang in there and wait for an evidence-based therapy to emerge or do I give advice about things that may make a difference?
First, we need a clear picture of what MS does. The MS Trust posted some stories last week about carers of people with advanced MS. Here are two:
https://mstrust.org.uk/get-involved/advancing-ms-care/mark-and-portias-story
https://mstrust.org.uk/get-involved/advancing-ms-care/peters-story
I doubt if the cases above are outliers. My GP cares for two women in their mid 30s who have MS and are in care homes! How can these stories be happening in the 2020s when (1) pharma are making tens of billions of dollars each year from expensive MS treatments and (2) ECTRIMS have had c.25 annual conferences!
No one with MS would want to end up in theses situations and family / friends feel the same.
Drugs to halt smouldering MS and drugs to prevent neurodegeneration are needed now, but the system that’s followed has not delivered. My neuro could offer me nothing. I mentioned Alpha Lipoic Acid and he said the data showed promise. Off my own back I’m taking 1200mg a day. What have I got to loose? Ibudilast is a drug with a proven safety record which showed good results (for PPMS) in the Phase 2 trial. This may never see the light of day, as many other promising drugs, or will take another decade to get licensed. What’s the risk of am MSer at EDSS from taking this drug – again they have nothing to loose.
What if a drug in a phase 2 trial showed highly effective results for halting smouldering MS? Surely an MSer should have an opportunity to get the drug (even if self funded) to give themselves a chance not to become more and more disabled?
The oath taken by doctors to do no harm must be countered with a philosophy of not watching a patient deteriorate. If someone fell in the canal would a neuro not throw them a life buoy because they weren’t sure if it was compliant with U.K. buoyancy aid standards? Safety is paramount for health people, if you are EDSS you’d drink monkey piss if there was a chance it would put out smouldering MS.
Neuros (not you) need to reassess was providing care means. I’d like to be a fly on the wall of the unfortunate neuro diagnosed with progressive MS. Would they do nothing? Or would they be ultra friendly with the hospital pharmacist – got any cladbrine tablets knocking about? Any chance of a couple of packs of Ibudilast?
If neuros don’t provide any advice to those with smouldering MS, there will be boom for the dark web where those ordering medications may not end up with the real thing (or something that will do harm).
Summary – any steers by a neuro of supplements / drugs with safe profiles (eg statins) that might slow neurodegeneration would be very welcome.
RE: “I’d like to be a fly on the wall of the unfortunate neuro diagnosed with progressive MS. Would they do nothing?”
This is the ultimate litmus test, which is what this pwMS called me to ask. It’s a very difficult question to answer.
Can’t you respond in a more generic way to the patient ie “very broadly, the patients who appear not to be progressing as quickly are those who: don’t smoke; maintain a healthy weight; have blood pressure in the ideal range; exercise regularly; get good sleep (GP can prescribe medication for this if required); are Vit D replete; are on top of other conditions (diabetes, dental health). ALP (readily available) from early studies may provide some neuroprotection. You could ask your GP about starting Simvastatin which is in a Phase 3 trial. Signing up to a trial testing drugs to address smouldering MS is also an option. If I was in your shoes I’d certainly be following / considering all of the above.”
My GP simply said “as there is no active inflammation there is nothing I can give you”.
“Can’t you respond in a more generic way to the patient ie “very broadly, the patients who appear not to be progressing as quickly are those who: don’t smoke; maintain a healthy weight; have blood pressure in the ideal range; exercise regularly; get good sleep ?”
No..none of that has any affect other than smoking…
Pender says those in rr have just enough CD8+ t cells to control EBV and avoid progressive ms stage.
How else to explain writer Joan Didion diagnosed in 1972..
and now 86 still walking.
https://www.google.com/search?q=joan+didion+ms&rlz=1CATQWC_enUS898&oq=&aqs=chrome.0.69i59i450l8.22968348j0j15&sourceid=chrome&ie=UTF-8&safe=active&ssui=on
How can someone do nothing at all when they can take a punt on something that MAY help? As long as it won’t do any harm, what’s the harm in it?
if nothing else at least you could say that you tried your best.
Here are 2 ALS researchers who got it..one entered his own placebo trial.
“A student of Greek tragedy, Desikan is acutely aware of the irony that ALS is now his personal nemesis. It seems like “the universe is playing a cruel joke on us,” he types, even a few sentences taking minutes to complete.
“I have lost my faith in god,” he continues. “I can’t believe that a loving being would ever do something so cruel.”
https://www.mercurynews.com/2018/06/17/ucsf-researcher-a-rising-star-in-study-of-als-now-ravaged-by-disease/
___________
Also the head of the UCSF ALS center also got the disease and passed from it.
https://www.sfgate.com/health/article/Dying-doctor-s-noble-choice-Stricken-S-F-2737877.php
How can someone do nothing at all when they can take a punt on something that MAY help? As long as it won’t do any harm, what’s the harm in it?
“Jamie-Lynn Sigler’s confirmation that she has multiple sclerosis was part of her bid to challenge perceptions of the disease as completely debilitating. The Sopranos actress joins a number of high-profile people talking about their experiences of MS to raise awareness of the disease, its effects, and what can be done to manage symptoms.”
There’s too many out there pushing false hope info. celebrities and Prof G
https://www.independent.co.uk/news/people/jamie-lynn-singer-and-other-high-profile-people-living-multiple-sclerosis-a6825271.html
“GAVIN GIOVANNONI
March 29, 2017 at 6:41 am
I just received this question via email: “Should we have any optimism re Ocrelizumab or has my wife’s MS progressed too far?”
“Yes, I do have optimism. We live in a remarkable era; the era when we are unpacking human biology at such a rapid rate. Who knows what lays ahead?”
What a difficult situation for you to be in. Not medical but, personally, I would want any suggestions to be based on the results from trials, early stage or otherwise, and perhaps to make a decision based on the interpretation of these by an expert like yourself. A scientific rationale is fine but so many ideas that seem logical on paper don’t translate into ‘real life’ . The results so far on statins look good, so wouldn’t they be worth exploring?
Re: “A scientific rationale is fine but so many ideas that seem logical on paper don’t translate into ‘real life’ .”
As a counterargument, a lot of therapeutic strategies and drugs have failed because of poor trial design. So there is a balance to be struck.
Yes, totally agree a lot of trials are poorly designed when you look into them a bit – which is why I’d definitely want to go over the ‘results’/hear an interpretation of them by an expert.
Haven’t read the statin results, for example, but they are definitely hyped as being promising …
Self managing and maintaining what I am still able to do is a full time job – but oh sooo worth it!
Diet is of huge importance – when I was first diagnosed (after at least a 15 year battle with doctors to believe I had MS and needed an MRI and to be seen by a neurologist…. Anyway that’s a whole other story which most docs aren’t interested in and any doctors reading this now will most probably be trying to think of defending the god awful doctors I had….. Lol not bitter at all am I – one day I will write a book of my story…..)…. Anyway, anyway, anyway – yes diet is hugely important to me – when first diagnosed I had got to the stage of not being able to get up and down stairs or walk unaided with terrible gait. Absolutely exhausted and fatigued all the time. My legs were spasming most of the time and my feet and legs were so painful all the time… Many more symptoms, in fact I had all listed…
Anyway I learnt about diet, decided to do a food diary, read “MS Recovery Diet” and learnt to cut out gluten, dairy, eggs, yeast, meat, legumes, processed sugar and oh my – after a couple of days I was going up and down stairs again and now I am doing at least an hour and a half of exercise a day – this includes yoga, cycling (on peddling machine), pilates, weights, balance exercises that I found on YouTube and I dance alot. I know that I wouldn’t be able to do all the exercises if I didn’t eat the way I do. I break the exercises up during the day.
Yes I still have problems, I need a mobility scooter out and about and a walker or stick for short distances and a tremor that seems to progress (tremor is the bane of my life) but wow I feel amazing in comparison to how I used to feel.
I know of others in this situation who feel better when cutting out certain food groups and I just wish they would research this or at least do a food diary! Cut out the food groups for a few weeks and see how they feel… I wish so much for this as so many people could feel better if like me no meds are out there to help. At least try….
I feel I have maybe ranted on a bit too much… Toooooo hot out there today!
Mine is Thames water and it tastes awful its very hard.
I was reading the replies just this morning on your recent ‘purple haze’ post. Anonymous 11.32pm caught my eye.I have cut and pasted it below. I do have a question though about alem / HSCT and the window to potentially avoid smouldering disease. How can a patient make an informed decision as to when this has closed? How can a neurologist even? would you tell your 49 friend to pursue this for instance or would it do more harm than good? these are the decisions facing patients in his position.
“I can offer you some suggestions based on my own reading.
The most effective add-on neuroprotective therapy is almost certainly exercise. However, I think you do have to go beyond the rather conservative official recommendation of 150 minutes a week. I would suggest a minimum of seven hours of high-intensity exercise a week if you want to make a serious dent in MS.
Prof G has suggested before that there is a strong case from basic science for a ketogenic diet and intermittent fasting being beneficial. I personally do 16:8 intermittent fasting.
In terms of supplements, you can take 5000 IU vitamin D (obvious recommendation), 1200 mg alpha-lipoic acid (in a single dose, without food), and 500 mg coenzyme Q10. There are more you might want to consider, but these are the basics.
If you can, start taking a sodium channel blocker drug. There have been two positive phase II sodium channel blocker trials. These are already used for treating pain so you might be able to get a doctor to prescribe them if you say you have MS-related pain.
Finally, there is a drug called Ibudilast which has two high-quality (multi-center, hundreds of participants) phase II trials indicating benefit for brain atrophy at a dose of 100 mg/day. Ibudilast has been used for stroke and asthma in Asia for decades and has a well-know, excellent safety profile. I have personally never experienced any side effect other than slight, transient nausea. It is an OTC drug in Japan and it is very easy to order online from Japanese pharmacies. However, 100 mg/day is a high dose, so be warned that this will set you back several hundred dollars a month.
Hope this helps.”
So how much do your supplements cost you every month? This is one of the hurdles people with MS face when self-managing their own disease.
Re: “thesis raised by Dr. Hawkes”
This is not a thesis, more like a hypothesis that needs to be tested and proved scientifically. I must point out that EBV is transmitted by saliva, and in about 10% of cases by sexual intercourse. Therefore, IM or EBV infection can look like a sexually transmitted disease, but it is generally not considered to be a STD.
And paediatric MS is as a result of child sexual abuse? With all due respect the Hawkes hpothesis is a crock.
How do you explain MS in 2 year olds?
Are there people reading the blog who got MS before they had sex?..You can be annoymous
Elvis has left the building……………………………….
There is no debate
Drugs to halt smouldering MS and drugs to prevent neurodegeneration are needed now but where is the money being invested to investigate smouldering MS and where are the trials. Will MS-Stat2 and MS-Chariot help
Personally its : exercise, 500 metres a day, alpa lipoic acid and a very positive can-do attitude. I’m on MS-Stat2 trial but about another 4 – 5 years before the results and I’m probably too old to get onto MS-Octopus
Am I another member of the pond life of MS? My MS is not active, no lesions on an MRI but I do have smouldering MS. Its now getting worse faster and faster. Guess I must just hang on in there and wait for my coffin.
Personally I don’t think giving advice can do any harm. Your a professor of neurology.
Information from yourself is far better than random information from the internet.
People don’t have to take your advice, however your extensive knowledge of the brain, even the smallest thing may help. Some things don’t have to go through phase 3 trials to mean they work.
Lifestyle is just as important as drugs in MS I believe.
Strange you are finding this a difficult question to recommend something off the record. Let me rephrase the question. If the outcome is inevitable decline. Surely recommending something that shows evidence of working, but will never make it to phase 3 trials because the drug is freely available or the cure/treatment kills the pharma cash cow of expensive treatments. If Neurologist as so worried about recommending ineffective treatments, then most of the dmt won’t be used.. Other than Alemtizumab and HSCT, all other Dmts are a waste of time.
I disagree with you
Which orange cocktail is your tipple? I would recommend the bloody or Siscilian negroni.
I don’t know if this is helping with my ‘smouldering MS,’ but I do hope it is helping with my MS in general. I have done a lot of work on my gut biome.
Shortly after I was diagnosed I saw a blog post on the MS Trust website about the ‘gut biome’ and how maintaining the health of it may play a role in treating MS in the future. Since then I have been researching online about the gut biome and recent studies that have been taking place which, show a potential link between autoimmune conditions and gut health – to me it makes sense that something is potentially going awol in the gut when it comes to autoimmune conditions seeing as about 70% of the immune system is housed in the gut. Professor Tim Spector at Kings College London has, as you undoubtedly know, made waves in recent years in the research of this area…one example which I found quite interesting was how high levels of Prevotella bacteria seem to occur in the guts of people with rheumatoid arthritis. However, PWMS have a lower abundance of Prevotella in their guts, and it was found in a study in mice by the University of Iowa that by increasing the levels of this bacteria, there is the potential for MS to be suppressed as efficiently as Copaxone.
The University of San Francisco have been doing a study/ies into specific gut microbes associated with MS. I think there is a lot of interesting research going on in this area. However, I cannot afford to wait for more definitive results to come out, and that is why I made the decision shortly after I was diagnosed to have a stool analysis and really start to monitor my gut health. I think it will become cheaper and easier to do so in the not so distance future…Tim Spector is involved with the new ‘Zoe’ app that will be coming out, which sounds like it will be a good way to monitor gut biome health, and health in general.
I also make a big point of trying to balance my Omega 3 and Omega 6 levels…I think it is very telling the recent rise in inflammatory and autoimmune conditions in areas where the Western diet has been introduced more widely in the last couple of decades, and where there has begun to be a higher preponderence of Omega 6 rich foods, for instance in the Gulf States.
Apologies, the post which sparked my interest in this subject was on the MS Society website – link below:
https://www.mssociety.org.uk/research/latest-research/latest-research-news-and-blogs/ms-and-the-brain-gut-connection
Dear Dr Medina
If you have a thesis about the cause of autoimmunity perhaps you can write a paper and then maybe it can be critiqued but, this is an MS blog and not an arthritis blog. When we see upper case in the posts we call this the troll font becuase this is how trolls write and as you speak of cures it raises alarm bells. Please stick to point of the thread and not use this as a random soapbox. Best wishes
“Prevotella in their guts, and it was found in a study in mice by the University of Iowa that by increasing the levels of this bacteria, there is the potential for MS to be suppressed as efficiently as Copaxone”
Knowing how good this is for most people with MS, one suspects…Stop now remember time is brain:-)
‘Finally, do any of you have advice on how you are self-managing your smouldering MS?’
I suspect ProfG that you have a perfect handle on the plethora of means utilised by PwMS to self manage their MS. The fact is that neurologists should alert their patients to the variety of things they can take up in order to potentially facilitate their well-being. Yes, there needs to be the emphasis on ‘potential benefits’ but why leave people in ignorance, or attempt to dissuade on the basis of limited scientific evidence.
The sad truth is that here in the uk there’s no such conversations unless engendered by the PwMS and I’m sure I’m not alone in running shy of sharing with HCPs exactly what supplements and meds I take for fear of the negative reaction and the resulting deterioration in our relationship.
One other circumstance has the potential to be pivotal: that of sudden onset factors such as infections, or stress. This very afternoon I’ve been debating with my husband when I should contact my GP about an upper respiratory infection (not Covid – tested) that began nine days ago. Despite doing everything possible I’ve still a persistent and sometimes severe cough and I’m now experiencing a new spasm.
Had Alem so always takes me longer to shake things off / spasms are one of the symptoms expected with an infection / nhs says wait a grand total of three weeks before seeking medical intervention with regards a cough. What about when you’re doing your darndest to manage your own smouldering MS🤷🏻♀️
One last thing you’ve made reference of in prior posts: capacity to fund. As someone who was previously a Social Services professional this makes me uncomfortable because I know for sure that my capacity to self manage my smouldering MS is way different than that of many other individuals and the unfairness of this sits uneasily with me.
Would you consider alemtuzumab for this patient?
“Would you consider alemtuzumab for this patient?”
No it has dreadful results in sp..hsct has much more potential since it gets in the
brain.
Exercise; >150 min per week (more like 150m.p.d.). Diet; coloured veg and fruit, fish. Vit D. Flax oil. And contrary to some responses, drink plenty of water.
“Prevotella in their guts, and it was found in a study in mice by the University of Iowa that by increasing the levels of this bacteria, there is the potential for MS to be suppressed as efficiently as Copaxone”
Knowing how good this is for most people with MS, one suspects…Stop now remember time is brain:-)
I don’t think clinicians should ‘promote’ unproven, unlicensed treatments, but informing patients in an open and honest way is a moral duty.
To many clinicians, “Smouldering MS” is unproven, and for others would agree the view of smouldering MS is a separate process, but they would not agree the IRTs have proven efficacy on the process. Can we draw the line that these clinicians are quacks?
Under-treating is definitely an issue, on the other hand, there could be a problem for newly diagnosed pwMS believing in IRTs are the only choices and delaying treatment for 2nd and 3rd opinions, losing best window for treatment.
At the end of the day, not everyone needs a sledgehammer (even if everything suggested here can be proven), the added risks of IRTs may not be justified for those with a low disease burden.
How can we treat MS, when we cannot find the CAUSE OF MS? We are throwing darts ??
We are going in circles. I found journal articles from Australia and others as far back as 2004 stating “EBV Causes MS” . If these Studies prove EBV is the cause of MS. Why are we discussing EBV theory 17 yrs later with no plan of action ? IF EBV is the cause, then someone fumbled the ball, or is incompetent or worse. I had a Severe Case of Mono (EBV) at age 14 (1982), throat was swollen shut. Did I infect my Mother and brother? Now we all are MS victims, older brother is in denial. No MS or other immune disease in our immediate family, except for Parkinson’s. My cousin the farmer never married or had any children, he was probably exposed or drank the chemicals from his well, he is in bad shape at 65 y/o.
If EBV is the cause then I would imagine more Humans would be MSers. The USA a population is ~ 320 million : 1 Million ratio of MSers per MS Society. The Ratio seems very low if EBV is the cause, more should have MS in my opinion. Thus my gut feeling is EBV is not the smoking gun, but possibly part of the riddle.
I believe the MS Cause is convoluted, perhaps the EBV is the cause or part to the riddle, but obviously the cause is elusive or is it? Either the MS cause is simple or very complicated with many characters involved to trigger MS.
The one factor affecting majority of us, some more than others, and dependent on location. The Pollution we have accumulated since birth is part of the riddle. Any studies on MS patients measuring the level of toxins in our body?
Could MS victims be more polluted than the average person. I grew up around Agriculture, how many insecticides and/or Herbicides, and fertilizers were utilized then discovered to be too dangerous for consumption. Too many to list.
Also, low levels of radiation could also be part of the equation. I grew up 150 miles from the First Atomic bomb, and all the collateral damage post detonation and R&D. I learned recently the Military exploded 2 additional nuclear weapons near my house in the 1960’s. Additionally many more nuclear weapons were exploded in Colorado and Nevada in the 1960’s. Radiation was detected in our area in the 1960’s. Every Nuclear capable country polluted 100’s of areas with extreme radiation pollution. You all would be shocked if you knew the whole story. WSJ wrote a long piece in 2013, noting all the collateral damage from the race to build the bomb(s). Russia probably has more contaminated areas than any others. 2021, China may have a leak at a Nuclear Reactor per the news, In 2011 the nuclear reactor melted down in Japan after the Tsunami, the radiation has created a environmental disaster.
My mother was only 1.5 yrs old and my Father was 3 yrs old on July, 16 1945. The Feds didn’t inform the innocent Americans for 3 weeks after detonation. Imagine the amount of radiation consumed from all sources post bomb. My Mom passed at 60 y/o, MS, COPD, and malnutrition, she was tired of suffering (RIP 2006), my Father passed at 79 y/o (RIP 2021) with extreme dementia out of no where. Almost everyone I know who lives in New Mexico/West Texas has had Cancers, extreme fatigue, Parkinsons, Dementia, MS, and others issues in their families at young age.. A 30 y/o cousin has MS now, her family was also affected by the agriculture and the nuclear nightmares I assume.
Could the MS riddle be Pollution. Why is the immune system attacking itself? The Pollution could be the smoking gun by triggering the immune system attack. What has steadily risen since the Industrial Age, Pollution. Why does MS attack the younger age and/or older MS victims is very strange to me. Could the level of pollution absorbed be the trigger?
MS is highly likely the cause of a rare late complication of the epstein barr virus. Just the same as some people have asymptomatic symptoms when they get the flu and others die from it. Another example is the human papilloma virus many people get it but not every girl that gets it will get cervical cancer caused by the human papilloma virus. Another example is HTLV virus that causes symptoms like MS ( which is sometimes used in the differential diagnosis of MS if you travelled to places that are common to this virus ) but not everyone that gets that exotic virus will develop MS like symptoms only 0.3 to 4% of those carrying the virus will develop MS like symptoms. HTLV is a rare virus.
Maybe it might be better if you submitted a paper outlining your theory to a scientific journal?
There are plenty of sites you can submit…do it…but not here
I agree with MD2 submit a paper…but why do B cells express HLA…because of a virus…I think this statement is simply misleading and wrong…Mice that have never been near a virus and have class II. Is this Dizzy Rascal?
So the fact that MS is more common in northern countries where tap water is generally of very high quality fits your picture how exactly?
Either you deserve a medicine Nobel (this would be more Earth shattering than the ulcer story, by far), or more likely, you are a garden variety crank. But yes, write your paper and get it published.
Sorry..way off with pollutiuon.
“CD8+ T-cell deficiency is a feature of many chronic autoimmune diseases, including multiple sclerosis, rheumatoid arthritis, systemic lupus erythematosus, Sjögren’s syndrome, systemic sclerosis, dermatomyositis, primary biliary cirrhosis, primary sclerosing cholangitis, ulcerative colitis, Crohn’s disease, psoriasis, vitiligo, bullous pemphigoid, alopecia areata, idiopathic dilated cardiomyopathy, type 1 diabetes mellitus, Graves’ disease, Hashimoto’s thyroiditis, myasthenia gravis, IgA nephropathy, membranous nephropathy, and pernicious anaemia. It also occurs in healthy blood relatives of patients with autoimmune diseases, suggesting it is genetically determined. Here it is proposed that this CD8+ T-cell deficiency underlies the development of chronic autoimmune diseases by impairing CD8+ T-cell control of Epstein-Barr virus (EBV) infection,”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3270541/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5292561/
“The line between being an evidence-based practitioner and a quack is a fine line”
Shocking to see this from Prof G
why?
Well I was being sarcastic, what I wanted to say is it can never be justified to not be evidence-based in science.
Prof G has too many opinions and I believe there are good pieces of evidence to support these opinions. Maybe he’s reserving them for papers he’s working on but what do I know.
I think your advice should be based on data from preliminary trials in people with MS. I don’t think it’s irresponsible to give generic advice.
I agree with the person 12/06/21 recommending 7 hours of exercise per week; ketogenic diet; 16:8 intermittent fasting; 5000 IU vitamin D daily,1200 mg alpha lipolic acid daily, 500 mg coenzyme Q10 daily; 100mg ibudilast a day.
I have seen the question asked numerous times here with no direct response. With the obvious success of the HSCT procedure, why are the neurologists not only reluctant to push for its FDA approval, they appear to actively discount it when patients bring it up? I, like others, am disappointed that we are forced to leave our country to have the procedure in places like; Mexico, Russia, and others. I went to Mexico personally. Clinica Ruiz, 5yrs ago, with ppms. Even with my rapid decline to 6.5 edss. I am still at 6.5 5yrs later, with some improvements physically(bladder control, heat tolerance, and brain fog), all better. Why does the Neurological community not get on board, .to put pressure on the FDA for U.S. approval? There are very few neurologists who are not getting economic favors for pushing the DMT’s.
Carl, neurologists don’t make money from HSCT. However, they do make money from giving regular infusions. You must have heard of the ‘Tysabri Infusion Millionaires’; only the US could make a group of neurologists very rich from setting up large high-throughput infusion centres.
Some people would argue the evidence base for HSCT is not yet firm enough, i.e. we need more randomised controlled trials. This is why several are currently running. Another thing is that HSCT is not a controlled medicinal product, but a procedure. All of the drugs that are used for HSCT are decades old and off-patent. Hence the onus of wide adoption is with the neurologists and haematologists who run the HSCT units. I am sure the haematologists will say yes, which is why these foreign units are so popular. Therefore, as you say it is the neurologists that need convincing.
“All of the drugs that are used for HSCT are decades old and off-patent. ”
The drugs are all FDA approved..so FDA can’t approve hsct..Because all they do is approve food and drugs. FDA does not approve medical procedures/operations.
Yes, by all means, let’s run another round of trials. The trials the different researchers have run, through phase III completion, with white papers published in the journals did not cover enough. Yet DMTs only have to say one group did not degrade as fast as was expected, so it must have worked! Now give me approval and a 10yr patent so I can get rich! All I need to do is list all the bad possible reactions. Hire a fast talker for my commercials. I will ‘Grease the palms of enough Neurologists’. I don’t need to worry about a cure because a cure is the biggest fear of all Pharmaceutical Companies. They will not let that (HSCT) Pass.
“Some people would argue the evidence base for HSCT is not yet firm enough, i.e. we need more randomised controlled trials.”
Who would say that..? An ostrich..?
“Results showed that at five years of treatment, 78.5% of patients who underwent AHSCT remained in a NEDA status, while only 2.97% of those who were on DMTs achieved it. In addition, half of the patients (one in two) treated with AHSCT reduced their disability level (as measured by EDSS), whereas only one in 13 improved with DMTs.”
Fact is if one can’t understand that deletion of b and t cells in cns is the best treatment at present for smoldering ms..they have no business seeing patients. Diet and exercise…biotin..etc. is nothing in comparison.
“Do I tell him to hang in there and wait for an evidence-based therapy to emerge or do I give advice about things that may make a difference? If I did give him advice would a scientific rationale be enough (preclinical data) to support my position ..”
Sure hang in there and wait while your muscles/joints get neurogenic atrophy..spasticity..and contractions. Dr. Burt did plenty of early spms like
this patient…he did them off trial…as they would hold steady and stop progression as opposed to the 1-2 edss improvements he got in rr.
It’s irresponsible or malicious not to inform this patient of all this.
“I am sure the haematologists will say yes, which is why these foreign units are so popular.”
No..they are not popular…only one thousand have been treated in Mexico…out of 1 million ms in u.s. alone.
https://www.frontiersin.org/articles/10.3389/fneur.2021.647425/full
“With the obvious success of the HSCT procedure, why are the neurologists not only reluctant to push for its FDA approval, ”
Hsct drugs are already fda legal so it’s already fda approved…neurologists just don’t want to send all their patients away…and lose money.
Dr. Burt trials are not for fda but to show insurance companies that hsct is cheaper than drug
treatment. Also problem is there is a solid failure rate of 20-30% in rr…and in ppms only
seems barely 50% are able to halt progression…so you were fortunate your progression stopped.
This might be a little bit off-topic, but Prof G, did you manage to receive the data on Ocrevus’ BVL rate dependent on the quartile/drug contetration levels? Was the lower CDP related to drug contetration levels due to lower atrophy rate?
Cheers
“Ocrevus’ BVL rate dependent on the quartile/drug contetration levels? Was the lower CDP related to drug contetration levels due to lower atrophy rate?”
No..don’t think this would ever show up like that.
Hydration levels alone would affect bvl more.
Though it was stated some time ago that Prof G has asked for this data to be provided, I wonder if he ever received it and what was the outcome.
I had the same question Lukaasz.
I wonder how some pwMS can access treatment like antivirals, for example the combivir case. If smouldering disease was recognized then there would be nothing in label to treat it allowing access to other treatments even if self funded. So people could start treatment if only prescribed by a neurologist under the off-label rules. At that point even if data would not come from a clinical trial if there is a treatment that really makes the difference we would know and there would be just the need to verify it in a controlled trial. It is more or less what is happening with HSCT. So we would need to have smouldering MS recognized and then brave neurologists to have a start. Then also patients willing to take risks
“I disagree. It was great to publish here”
We are not a journal, if we were there would be a review process……The publication has been rejected. …sorry
Fascist.
Thanks for that one
Mouse Doctor given that José Artur Medina is using profanity as a way to belittle you, these comments should be removed. Everyone deserves to be treated with respect which he clearly is not. This sort of behavior should not be tolerated towards any staff or members of this blog. Healthy conversations are always welcomed but these sort of comments only serve as an attempt of silencing the other member or staff. I would please ask to consider removing the comments in which José Artur Medina uses profanity such as the word Fascist to describe Mouse Doctor with the intent of belittling you. Furthermore, I am sorry these things were said about you. Sincerly, an ally
Thanks for your support,
I have left this comment as they were directed at me, as it says something about the commentator….and that says something about their views….We call these posts IG11…This is Dagenham…This is three stops on from Barking.
I am sure this will mean we get a few more expletives
The Hawkes idea, which was the basis of the hypothesis was deeply offensive to people with MS and presented in way that would be offensive.
I have binned all of his comments prompting the diatribe. He will be off soon. But rest assurred you won’t see any more of his profanity….We used to have Blog rules and these were broken as you say.
However if we banned all people who have a go at us, we wouldnt have Sid, Dr Dre, VV etc
You are on a site that uses scientific arguments and articles, but when you find a narrative for which you have no arguments, you run away, well suited your rat figure, excuse my rudeness, but arrogant and arrogant people like you, who believing that they know what is best for others only delay the evolution of science and produce even more pain and suffering. Sleep with that cowardly fascist. As I was deceived, I grew up believing in the courage of those who would fight in the fields, on the beaches and who would never surrender to fascism, it seems that cultural totalitarianism dominated the land of the queen.
Extraordinary claims need extraordinary support.
Not seeing much of any support for your narrative (fitting, so far it is just a story)
Write a guest post declare your conflicts and send it ProfG… (Better still write a paper and try publish it)…Arguments..yes I have a few
O tempo irá desmascara-lo = time will unmask it
Yes and when it is unmasked it will show to be of little merit
What about teroflunamide?