128 Comments
User's avatar
Karen's avatar

Thank you so much for writing this, i'm so grateful for having had Lemtrada. I'm all for lifestyle changes or proactive approaches to health - like looking after your car and optimising it's running, however i am under no illusion that optimisation is not a replacement for medical intervention. When you get diagnosed with MS (and friends have said the same about other diseases such as RA or IBD) the amount of diet books which offer cures are astonishing. I don't think this is fair at all for a vulnerable population to be targeted for profits.

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Pascale Demange's avatar

I. Completely agree. There's lots of people on social media who tell you it's easy to get better if you want...or pay to hear what they know..

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Sal's avatar

Thank you for this newsletter! This needs to be said loud and clear. Shouted from rooftops even! Thank you! Especially for the last liner on smouldering ms and not giving up hope. Good for us to be mindful of that distant light in the horizon.

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Vanessa's avatar

In 1987 at the age of 19 I had opticians neuritis. Fast forward to 2004 I was diagnosed with ms. My neurologist said it was " at the benign at of the spectrum" and I was offered no treatment. In 2016 I asked another neurologist if he thought I should go on treatment (I'd noticed a slow decline in function though was able to move about unaided). He said no,as I "wouldn't want all the nasty side effects". In 2022 I noticed a more pronounced decline and started to need to use a stick. In 2023 I was put on siponimod. I feel that if my neurologist had allowed me to start a DMT in 2016 when I asked I would be in a much better place than I am now.....

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Caroline Mawer's avatar

exactly - me too!

those neurologists dont have to cope with the disability they have watched happening.

do no harm?

they have done harm and are still doing harm .

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Sue's avatar

Wow. I was a little older in 1987, 25, but otherwise our stories are very similar. Except I still havent been advised on DMT.

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Vanessa's avatar

Still no DMT. How are you managing?

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Sue's avatar

Walk without aides but not well or far. You?

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Vanessa's avatar

I need to use a stick now. My balance and gait isn't brilliant and as I get older I get slower!. That's great you manage without anything

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Sue's avatar

It's not pretty! See neuro in March. Going to ask for something!

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Vanessa's avatar

Yes I would definitely be persistent. It appears to be a bit of a lottery. I'm starting on the Octopus trial in a few weeks

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Mark's avatar

I recall reading the ‘evidence’ for the Wahls protocol and being astonished that anybody published it. The outcome measure was subjective wellbeing rather than anything objective. It is a very unusual diet and the Hawthorn effect must have been enormous - the drop out rate certainly was. Obviously, it was blinded and there was a placebo group - NOT! the analysis was not ‘intention to treat’. I’m sure she believes in her diet, but like so much ‘functional medicine’ there are no well conducted studies to prove any of it works, but I do ‘feel’ a plant based diet helps me a bit (n=1 crossover).

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Helen's avatar

I knew someone on this. She stuck to the food part but often binged wine. Unbelievable ignorance. Alcohol is so bad for our MS brains when we binge.

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Mark's avatar

I’ve been off alcohol for about 3 years, because Ocrelizumab kills B lymphocytes and then you need your bone marrow to replace the B-lymphocytes with healthy ones. Alcohol is a bone marrow suppressor to the point that an old teacher told me, “if your mean red cell volume rises over 100, you’re drinking too much. If it’s sub 100 you’re fine so carry on”. I’m not sure that’s true, but one shandy made me feel drunk last week - so I’ve officially become a lightweight.

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Helen's avatar

I’m a lightweight too. My daughter laughs when I have a shot glass of red wine. Wine doesn’t bode well with Sativax. My sister was an alcoholic. She developed or should say got diagnosed with MS in her late 50s. She went downhill quickly.

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Caroline Mawer's avatar

just yesterday i commented to you https://gavingiovannoni.substack.com/p/case-study-are-undefined-treatment/comments

that i was advised not to have meds for many decades as i was 'doing well'

then when i read your swimming pool / flipping the pyramid articles, i started to argue for dmts - but was recommended to start at the bottom of the pyramid. my disability got significantly worse for the year while i argued for a more potent dmt.

now my mris are 'stable' while my functionality is as stable as a gaza refugee camp!

of course im smouldering!

im spending lots of time and my limited (i cant work any more) money on exercise and healthy food.

im 60 and have a feeling i wont 'count' for btks when they are agreed.

the neurologists who sat on their hands while i 'did well' dont have to live with the disability they inflicted on me - and, i guess, many other people.

how can we hold them to account?

theyre still doing it to some people l know

yesterday i said:

lets any other 'veteran' MSers who feel similarly get together!

we need to work together !

im on caroline.mawer@gmail.com

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Angela cox's avatar

hi read this and wanted to say:

Ditto!!

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Kevin's avatar

And that's why I keep bugging my neuro for Cladribine despite not having disability. I'd rather whack this as hard as I can as early as I can. I'd pay out of pocket for it to be honest.

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Karen P's avatar

In 2007 I had exhausted the original dmts, my MS nurse was keen for me to start natilizumab but the neuro wasn't (it was around that time there were some deaths associated with it's use which we now know were related to JCV status). Between 2007 and 2012 I took no MS drugs, I had steroids about every 5 months. I also had a baby in 2011. After a traumatic birth I was relapsing about every 6 weeks but I had lots of suggestions why (the weak, numb arm was from carrying a 5lb new born) and no scan. I moved house and changed neurologist in 2012, I was referred for an mri and even before the urgent follow up appointment I had a letter saying I was starting on natilizumab as I had multiple enhancing lesions. I believe that gap of no treatment, no treatment when first diagnosed (2001-2005) and a protracted diagnosis has left me more disabled than I could be. I failed natilizumab after 9 years, ocrelizumab after 2 and will hopefully start y2 of cladribine in April. I exercise daily and eat well but I would never use that as a substitute for dmts

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Cathy's avatar

I've been in the minority for some time but there are MS "influencers" "doctors" making loads of money from patients agreeing to rely on only nutritional alternatives to "cure" MS rather than complementary medicine that includes DMT's. I'm not passing judgement on anyone's personal decision. It's just something that I highly doubt is a successful path to follow

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Vincentina's avatar

Unfortunately there are so many "warriors" out there who don't keep up with the science and DMT developments relying instead on woo woo. In fairness to Dr Terry Wahls she does recommend her lifestyle changes as well as DMTs.

I'm not surprised Chad decided to stop interferon as it's vile.

He also is the poster child for "natural cures" and MS so he needs to keep up his brand. Cynical moi surely not

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Helen's avatar

I can not stand the term warrior. It’s not just applied to MSers by other MSers but in other areas of life’s struggles. It suggests if you’re not a “ warrior” you’re weak. Absolutely not.

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Vincentina's avatar

Amen sister!

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Helen's avatar

Hahaha. Makes my toes curl.

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Karen P's avatar

Also "suffers with MS" annoys me. I live with MS

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Patricia Munn's avatar

Totally agree!

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Helen's avatar

Suffer…… I agree it’s irksome. Although as I age I hate this disease even more. I do suffer more but don’t use this language as I think you start seeing yourself in a victim role. It is Not good for mental health

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Sandra's avatar

Glad I’m not the only one that feels this way

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Rebecca's avatar

I’m so grateful for the Overcoming MS programme because it has whatever DMT your neuro recommends as one of the key pillars as equally important as the evidence backed lifestyle interventions- diet, sunlight and vit d, exercise, stress reduction, prevention for family members.

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cpep's avatar

I would love some advice regarding age and potential treatments. I fall into the category of a diagnosis in at 48 in 2008, Rebif in 2011 to 2015. As my MS was stable I was not offered any further treatment and have relied on lifestyle. Since my menses stopped at 56, my progression began advancing. I often wonder if I should start HRT therapy or if I’m a candidate for Mavenclad or another therapy available to SPMS. If I am, I will self-advocate. Anyone on this feed and or Dr. Giovanni if you have any insights into us oldsters I would love a short update if possible.

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Gavin Giovannoni's avatar

I am giving a talk on this topic next month and will share my slides with you.

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cpep's avatar

Just read the write up on your topic that you sent. (I need to remember to check your replies to the comments) Thanks for this write up

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cpep's avatar

Wonderful, thank you.

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EP's avatar

I am unsure if you mean you will be talking about pwMS over a certain age (50?) or (peri)menopausal pwMS? If you are talking about perimenopause and menopause please can you include advice for those pwMS who are having early perimenopause in their 30s? It's very hard to find good information for those of us having perimenopause in 30s.

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Patricia Munn's avatar

Yes -would definitely like more profile generally in the MS community for 50s and above..

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cpep's avatar

and as always, thank you so much for your commitment and dedication.

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Ann Wilson's avatar

Initially had Beta interferon from 1997 for 13yrs, then Tecfidera for a few months only followed by Tysabri for a couple of years. I went to Russia in 2018 for HSCT but was SPMS / smouldering MS. Since 2018 I’ve not been eligible for anything else and am reluctant to have further drugs but definitely deteriorating slowly. Awaiting future medications for smouldering MS to be available but do you think I should have something for now??

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Sari Friedman's avatar

Thank you for this helpful insight. I am attentive to my lifestyle to mitigate negative effects of MS, but I am also on Ocrevus. At this point, it doesn’t seem to be helping SAW, but I haven’t developed new lesions since being on it, so that’s good. Thank you for your research on Smouldering MS - I am struggling with a lot of progression and worsening from one lesion and I am keeping an eye on your posts about upcoming medications.

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kb's avatar

From the FDA approval documents for Ocrevus for PPMS:

-Table 14: Concerns with Design, Conduct, and Data Quality of the PPMS Trial (Cross Discipline Team Leader Review, Clinical and Statistical Reviews of Efficacy, Reference ID: 4019179, p. 39)

1) Concern: Imputation of primary outcome events; Discussion: The Imputation used in the PPMS Trial, but not in the RMS trials, increased the number of confirmed outcome events by 21.8% of the 256 CDP events used in the pre-specified primary analysis. Without imputation, the p-value for the primary outcome changes from 0.032 to 0.148

2) Concern: no treatment benefit for female patients; Discussion: 35.5% of women in the placebo group had CDP events compared to 36.0% of women in the ocrelizumab group. In the trial, there is no benefit of treatment with ocrelizumab in women, numerically or statistically. This unusual finding is the result of pre-specified secondary analysis. If this result is real, it provides additional evidence that the effect of ocrelizumab on disability progression is significantly different in PPMS than RMS. If not real, the results add to uncertainty because of inconsistent results between important subgroups.

3) Concern: Lack of treatment effect after 18 weeks as seen in Kaplan-Meier curve of primary outcome; Discussion: The Kaplan-Meier curves for confirmed disability progression are remarkably different in the RMS and PPMS trials. In the PPMS trials, the rate of progression is the same from 18 to 120 weeks, or longer, suggesting that any effect of ocrelizumab is limited to the first 18 weeks of treatment. In RMS, the treatment effect increases throughout the treatment period in both trials.

4) Concern: HIgh rate of dropout and missing outcomes; Discussion: The treatment group difference between the proportions of patients who had confirmed disability progression events is 4% to 7%. At the conclusion of the trial, the dropout rates are 34% and 21%, 5-fold and 3-fold greater than the 7% treatment effect for the placebo and ocrelizumab, respectively. With this many potential missing outcome events, there can be little confidence in the accuracy of the estimate of ocrelizumab’s effect on disability progression. The same ratios in the RMS studies for the relapse rate are 1-fold to 2-fold, and for CDP are 2-fold to 4.5-fold.

5) Concern: Determination of Baseline Primary Outcome Measure of Baseline after Recorded Time of Randomization and Infusion; Discussion: In 29% of patients, investigators reported the baseline EDSS after infusion of the study drug and in 67% after randomization. This represents an unusually extensive failure of investigators to follow fundamental principles of clinical research. It may be indicative of poor compliance with the protocol in other ways that are not as obvious.

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Fiona Fenner's avatar

I was diagnosed with MS in 2007 and went straight onto Copaxone and also started implementing dietary and lifestyle changes. After about 9 months, I'd had enough of injections, stopped these and followed OMS. This went well for about 6 or 7 years, but then I had a couple of bouts of double vision. I then started on Fingolimod and later Tecfidera, but I decided to stop these when my lymphocyte count went very low. I changed to the Wahls Protocol, and it was going well until a relapse in 2021 with the right side of my face experiencing numbness. After much deliberating between Aubagio and Mavenclad, I decided on the latter, even though I am generally risk-averse. But the evidence was making it clear to me that I needed to hit MS hard, and I am so glad I did. Since taking Mavenclad, I have had no new symptoms or relapses, such that when I saw my neurologist last year, he said he didn't need to see me for 2 years (unless, of course, I had new symptoms). Looking back, I can see that it would have been good for me to have taken Mavenclad or similar earlier on in my MS journey alongside lifestyle interventions. Whenever I speak to others with MS who are facing choices regarding medication, I now encourage them to hit MS hard.

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TonyS's avatar

Great article Prof G. Trust the science.

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Lynn beveridge's avatar

Hi I was diagnosed in 2017 with CIS 10+lesions in brain nil in spinal cord lumbar puncture negative. Bilateral slowing on visual evoked potential test. History of what was likely optic neuritis in right eye. MRI’s since stable. I’ve never been offered a DMT it’s not even been discussed. Several neurologists since 2017, so difficult to keep track of. Upcoming review soon and likely MRI so will be interesting to see what comes up but I feel ‘stable’ no obvious signs of disease activity. Age 54 now.

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Tootes's avatar

Totally agree with everything you wrote. And people do need to be educated that its complementary not an alternative when looking at lifestyle changes. I had a disabling relapse in 2013, from which I never got full function back and I wasn't offered and DMT. It took a change of neurologist and time to get a DMT. My wish is that we had greater access to the more effective DMTs at any stage of our MS, and not have to jump through criteria hoops to get them. I would also like to stimulate a discourse on whether DMTs are less important for people in their 60's or not?. As we could be living another 20-30+ years, surely some treatment is still worthwhile? What evidence suggests it is less important and how old is this evidence in relation to MS DMTs?

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Tom A's avatar

I think the "argument" goes, for us older folk (I'm 67 now, vintage DX 1990), that most of us do not have relapses any more (if we started RRMS) and the meds are primarily proven to work on relapses. When something does work (Ocrevus for example) it is hard to demonstrate that it works and the effect is small, so do you want all the headaches that can go along with it? Also when we age, other stuff shows up that we may want to focus on. I think the doctor has written quite a bit about this in one form or another. :-)

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