Latest MS research – what I learned at ECTRIMS, part 2

xcel

Wow, what a full on 3 days for the brain! So inspiring to see a sea of research posters, a vast menu of presentations , and 8000 engaged delegates filling up on the latest research.

Bone marrow transplantation ( HSCT/stem cell) – is it a viable treatment for active relapsing remitting MS – debateimg_3970

Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial –  R.I. Spain (Portland, United States) lipoic-acid

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

Comparison of Beta Interferons, Fingolimon, Alemtuzemab (Lemtrada) and Natalizumab ( Tysabri)

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it. 

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D vit D.jpg

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that  people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

hb02Oxygen

MS from an energy perspective.

Q:Why are animals with experimental animal MS paralysed?

A: Axonal ( nerve) depolarisation ( can’t send messages)

Q Why are axons depolarised?

A: Hypoxia ( lack of oxygen)

Q: Why is the inflamed central nervous system hypoxic?

A: Reduced blood flow

Q Why is blood flow reduced?

A: Currently unclear , CNS specific ( ie we don’t know, but it’s just the central nervous system.)

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:  

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all  mine. If you spot one, please let me know!

That’s all for now, til the next time!

miranda

 

 

 

 

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Primary Progressive MS drug trial recruiting – Laquinimod

MRI

This drug trial is now recruiting for people with PPMS, in London. It’s a drug with exciting possibilities, not a ‘repurposed’ medication.

Here’s what Professor Giovannonni of Barts hospital and http://multiple-sclerosis-research.blogspot.com has to say about Laquinimod:

“As you are aware I am very impressed by the laquinimod phase 3 results. Why? Laquinimod is a drug that does not have much effect on inflammatory MS disease activity, i.e. relapses and MRI activity (Gd-enhancing and new T2 lesions). Despite its weak anti-inflammatory effects laquinimod has an impact on disability progression, that appears to be independent of relapses and it slows the rate of brain atrophy. All this points to laquinimod having neuroprotective effects downstream of inflammation. It now appears that laquinimod may be working on glial cell activity and the innate immune system; laquinimod down-regulates the mechanisms responsible for the slow-burn we see in MSers. Are the laquinimod results reliable? Almost certainly they are; why? Mainly because there has been two large phase 3 studies showing the same effect. This makes  the chances of this being a chance result highly unlikely.”

and here’s another post about it from the pharma side:

http://www.drugdevelopment-technology.com/news/newsteva-and-active-biotech-enrol-first-patient-in-laquinimod-phase-ii-trial-for-ppms-4561605

and here’s the link to the trial site from NHS choices website.

http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/clinical-trial-details.aspx?TrialId=NCT02284568&Condition=Multiple%20sclerosis&pn=1&Rec=0&CT=0

Exciting opportunity if it feels like you have nothing to lose, but ALWAYS REMEMBER TO ASK THESE QUESTIONS!

Questions to ask when considering taking part in a trial:

What are the potential risks?
How many people/ what percentage have these risks
What are the potential side-effects?
How many people /what percentage get these?
What can be done if I do have a side effect or risk? Is it reversible?
What are the potential benefits?
What percentage have had these benefits?
How much of these had similar condition at a similar stage to me?
How long do they last?
Is more treatment necessary?
How much does it cost?
Will you give information either to me or to my doctor about what therapy I have undergone?
How will I be monitored? Eg scans, bloodtests etc
How often will I have to return for follow up? Is there a charge?
Will they pay my travel expenses?
How will I know if it’s worked? What’s the timescale for improvement?
Is there a placebo ( dummy drug) group? If I’m in the placebo group, and the real treatment group benefit, will I have the chance to change to the treatment group?
If I have the treatment during the trial, and benefit from it, will I be able to carry on with it long term?

All the best!

Miranda

 

 

New research shows major impact of diet in MS

Good to see corroboration about diet in MS

http://www.msra.org.au/bad-fats-major-culprit-ms-progression

 Australian researchers find ‘bad’ fats major culprit in MS progression

16th May, 2014

van der mei, ingrid

Dr Ingrid van der Mei

Researchers from the Menzies Research Institute Tasmania have found adverse levels of ‘bad’ fats in the blood are closely linked to the level of disability in people with MS and the rate of disability progression.

These significant findings published today in the Multiple Sclerosis Journal andJournal of the Neurological Sciences suggest dietary and lifestyle modifications that improve fat profiles in the blood may also slow the rate of disability progression.

Senior researcher at the Menzies, Dr van der Mei says, ‘This is a very significant finding for the 23,000 Australians living with MS – as it shows reducing bad fats can significantly reduce not only the future level of disability but also the rate at which it progresses.’

‘Our new findings confirm that dietary measures to control fats in the blood is also another important measure Australians living with MS should act upon.’

Fats are an essential component of the brain and contribute to its repair and maintenance. However, some evidence suggests that levels of ‘bad’ fats may be linked to onset and progression of the condition. In this study, with PhD student Prudence Tettey as lead author, the team examined the fat profiles from blood samples of 141 people with relapsing remitting MS. The samples were collected at six monthly intervals over two and a half years as part of the National Health and Medical Research Council funded Tasmanian MS Longitudinal Study. This study is a highly valuable long-term data resource with detailed information on relapses, disability, MRI scans, lifestyle, immune function, virology and genetics.

The results identified that the amounts of a number of different fats in the blood, including the High and Low Density Lipoproteins (HDL and LDL) and triglycerides, were closely associated with disability level at baseline, and with disability progression over time.  However, neither the level of fat in the blood nor a person’s body mass index (BMI) were associated with risk of relapse.

This suggests that the fats in the blood may instead influence ongoing degeneration of brain tissue that drives the progressive phase of the disease. These results may have exciting implications for modifiable lifestyle factors that can influence disease severity. However, further clinical studies are recommended to confirm that interventions, such as reducing BMI and increasing physical activity, are able to produce benefits for slowing disability progression.

This research has been funded by a MS Research Australia project grant in 2012 to investigate whether fats play a role in the risk of relapses in MS and disability progression.

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What I’d do if I got diagnosed with MS

to-do-list DOING NOTHING IS NOT AN OPTION!! MS can have a very serious impact on your future quality of life. All measures you can take to stay well, have the most impact when they are done early on, and stuck to consistently. Nobody knows what causes MS. As far as the disease process goes, It’s widely believed that the early inflammation causes damage, which causes later degeneration, but we now know that degeneration is also a factor right from the start. However, there is a lot you can do to combat both inflammation and degeneration, both with medical treatment and your lifestyle & nutrition. Having worked as an MS specialist nurse for about 13 years now, here’s what I’d do if I got a diagnosis of MS:

1) ADRESS INFLAMMATION & DEGENERATION WITH DIET &LIFESTYLE. Get George Jelinek’s book ,’Overcoming MS’ and follow all the dietary and lifestyle recommendations to the letter. I consider this to be a rock solid foundation for good health, whether you have MS or not, and essential for people with MS. It’s also so great to keep hearing individuals stories of improvement, even with long-standing and progressive MS, following this approach, and both Jelinek’s, and more and more research on diet and disease backs up this evidence based approach. See www.overcomingms.org

2) Some – not all – but some, people with otherwise unexplained medical conditions, have an underlying food intolerance, and you can be completely unaware of the problem. If you do have an intolerance, for example, to gluten, then every time you eat that food, you set up a chain of inflammation in the body, which can certainly exacerbate any auto immune condition.  For that reason, I, personally, would also want to identify food intolerances. Finger prick blood tests are available online from companies like York labs and Lorisian. However, there’s a lot of controversy about them, and they have been found sometimes to be unreliable, with a tendency to just show up with whatever you’ve eaten recently. A more reliable way is to spend some weeks doing s ‘exclusion diet’, to see if you can find any cuplprits. Here’s one example: https://avivaromm.com/elimination-diet/ . We know that MS is a conditions with ups and downs anyway, and an exclusion diet is an effort, so both approaches have their pros and cons, but in my experience, when people who have a food intolerance identify and avoid that food, they get a lot better all round, so its worth doing.

If you do identify food intolerance, you need to also learn about gut health, and start building yours up by using a plant based diet and things like probiotics, more on that another time, then, hopefully, your exclusions don’t have to be forever.

3) Find out about your options re drugs. I am not going to be talking about diseases modifying treatment (‘DMT’) choices here, only broad concepts.

MS drugs aim to stop or reduce  inflammation, manifested as relapses, in the hope that this will prevent the degeneration. See the infographic in my Alemtuzimab about the relationship between safety and efficiency of the various treatments available.

An important point to consider is that some of these more effective drugs are ‘second line’ treatments, which means they are only available to you on the NHS if you have already tried the standard drugs. There are also sometimes drug trials recruiting, where you can access a drug as part of an experimental trial. (see other posts) There is a link on the MS Society website to find out what trials are ongoing and how to get involved in a trial.

MS drug treatment is a fast changing topic and you need to have a serious discussion  with your MS Nurse and/or neurologist to find out what you are eligible for, and then read round the subject and discuss to make an informed choice.

Make sure the information you use to make your decision is as objective as possible, and not coming directly from the companies making the drug. www.msdecisions.org is a decision making tool that’s been put together by the MS Trust, the MS Society, the UK MS Specialist Nurses Association and the Department of Health, so its’ as objective as you are likely to find.

Last important point: The earlier in the disease process that a drug is used, the more effective it is likely to be.

4) Consider a clear out. Environmental factors combining with genetic susceptibility is what is thought to trigger MS , and as we are still unsure exactly what those environmental factors are,  there is still a lot of interest and research going on into the role of viruses etc in MS. Even if this turns out to have nothing to do with the cause of MS, any inflammatory condition will be worsened by an overload of any organisms that should not be there, whether they are yeasts, bacteria, virus, or parasites. People who are concerned that they may have an overgrowth of yeast, wrong gut bacteria, etc may want have a ‘clear out’ by doing a  3 month ‘detox’ with a strong natural detox agent. I like something called SOS-Advance, which is a colloidal suspension of strong anti bacterial, anti viral, anti parasitic plant oils like oregano, neem etc, but there are plenty of other herbal ‘de-tox’ products. Be aware, before starting any detox product, that it’s possible to feel really grotty for up to a week at first, if you have a ‘die-off’ reaction. If this happens, drink more water, rest, make your diet light and fresh, treat any constipation, and shower/bathe frequently.

5) Eat Really good Food – it’s not all about avoiding stuff-  food has so much power to affect the cells of our bodies for brain and nervous system health, so read up on a wholesome plant based diet, and ‘eat the rainbow’, especially dark green leafy veg.

6) Becoming more resilient to stress. Super important. We know that unmanaged stress causes and inflammatory cascade in the body, and there’s enough research to identify it, along with infection, as a trigger for MS relapses. There’s load of research now on the power of meditation, mindfulness, and relaxation. Personally, and especially if you struggle to fit meditation or deep relaxation into your day, I like the HeartMath technique, where you learn to synchronise your heart rate variability, and get feedback as to how you’re doing. In my clinics, I use the desktop teaching program, and send people away with the simple technique to do regularly, but you can now purchase an app version, available from itunes: https://store.heartmath.com/innerbalance

7)Read up on intermittent fasting, even if it’s just to use if and when you’re aware that you have inflammation or relapse going on.

So, TO SUMMARISE, and adding the Jelinek/Overcomingms recommendations:

AVOID:

  • saturated fat ( meat & dairy, coconut & palm oil)
  • other fats in processed food
  • unmanaged stress
  • physical inacitivty (as much as possible)
  • foods which you test intolerant to
  • smoking
  • eating too many calories for your needs

TAKE:

  • a plant-based, whole food diet
  • eating a ‘rainbow’ with special focus on dark green!
  • high dose vitamin D3, keeping blood levels around 150nmol/litre
  • 20g omega 3 – 2 dessert spoons of cold pressed flax seed/linseed oil fulfils this
  • probiotics
  • Any appropriate MS treatment drug
  • meditation/deep relaxation 30 mins daily to improve resilience to stress, or regular Heartmath technique.
  • as vigorous as possible exercise 30 mins, at least 3-4 x a week, outside if poss
  • the sun – as close to all over as poss, 10-15 minutes when possible
  • Lipoic acid 1,200mg – see this post

and take courage – many people with MS go on to live healthy lives well into old age. I would encourage you to do these actions to help you to be one of these. 🙂

Drug trials in secondary progressive MS

Nice to see some drug trials for secondary progressive MS. These are to see if these agents might be ‘ neuro-protective’ – ie, help to save nerve cells, in progressive MS. All drugs have potential side-effects, but amiloride is a fairly old, well known drug that’s been used for a long time for people with a heart condition.

Here’s the web page. Obviously, you need to get really well-informed, and have a very serious discussion about the pros and cons of the treatment and being on a trial, but here’s the website if you’re interested.

University college london University of Edinburgh Edinburgh Clinical Trials Unit Multiple Sclerosis Society National Institute for Health Research