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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Fingolimod – be aware of this

Just a quickie – from Bart’s MS Blog by Gavin Giovannonni

ClinicSpeak: Fingolimoders need to be aware of opportunistic infections

If you are on fingolimod please be vigilant about infections, including opportunistic infections. #ClinicSpeak #MSBlog #MSResearch

“In response to an anonymous comment on the Natalizumab retinitis post yesterday. I think it is appropriate to warn all MSers on fingolimod to be vigilant as well about infections and opportunistic infections.”

“The two case studies below highlight that opportunistic infections and severe viral infections are an issue on fingolimod. The first case report below is of a near fatal case of herpes simplex virus encephalitis (HSVE). This is not surprising, in fact in the phase 3 TRANSFORMS trial there was a fatality due to HSVE in an MSer on fingolimod, albeit on the higher, 1.25mg, dose.”

HSVE

“The second case is of a MSers on fingolimod developing Kaposi’s sarcoma, which is due to a specific herpesvirus. Kaposi’s sarcoma is classified as an opportunistic infection and is seen most commonly in people with AIDS and in people who have had a transplant and are on immunosuppression. Although this patient had a lymphopenia (PML, I would predict the occurrence of other opportunistic infections in MSers on fingolimod.”

“One infection that can be screened for is HPV, the cause of cervical cancer. If you are a woman on fingolimod please make sure you don’t miss your regular cervical, or PAP, smears. If you live in a country in which this is not mandatory please ask your family doctor to arrange for this to happen. As always prevention is better than cure.”

Epub: Pfender et al. Reactivation of herpesvirus under fingolimod: A case of severe herpes simplex encephalitis. Neurology. 2015 May 8.

Epub: Tully et al. Kaposi sarcoma in a patient with relapsing-remitting multiple sclerosis receiving fingolimod. Neurology. 2015 May 12;84(19):1999-2001.

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. 🙂

Campath/Alemtuzimab/Lemtrada trials open for RRMS

If you have Relapsing Remitting MS, with 2 relapses in the past 2 years, and walk without a stick,  then it’s important to know about this.

Alemtuzimab, ( called Campath whilst being trialled at Cambridge for many years,) is a powerful immunosupressant, ( like chemotherapy), which is given as an IV infusion, has been shown to be very effective in stopping relapses and disease activity in MS – including progression of disability, as long as it is given before disability sets in.

In a trial of Alemtuzimab reported in 2008, compared to interferon beta-1a, alemtuzumab reduced the risk of sustained disability by 71%. There was also improvement of disability scores in the treatment group.  After 36 months the mean disability (EDSS) score in the alemtuzumab group had improved from 1.9 to 1.51 while that of the interferon group worsened from 1.9 to 2.28. After 5 years, those who had had alemtuzimab had 67% less disability, and 72% were relapse free, compared to 41% of the interferon treated group.

This makes it much more effective than the current disease modifying treatments ( DMTs), which can show reduction in relapse rates, but not prevention of progression.

This slide, from Neurologist Joanne Jones, at Addenbrookes, shows the placement of current drugs ( including stem cell treatment) in relation to efficacy ( effectiveness) and safety.

EFFECTIVE DRUGS WITH RISKIf you can see this, stem cell is at the top on the left, indicating highly effective when it works, but risky. DMTs are at the bottom on the right – safe – but not so effective as the newer agents.

Nataluzimab is the generic name for Tysabri.

It also has more risk of serious side-effects than DMTs, so weighing up your risk of serious disability from MS against risk of contracting rare but serious side-effects, needs to be thought about very carefully.

So what are the risks of treatment? About 30% of people treated with Alemtuzimab get a different auto-immune problem at some point after treatment, and this is generally a thyroid problem, which can be treated. About 1 in 100 develop a blood clotting disorder, ITP, which can be treated if caught, but one person has died. In trials on Alemtuzimab, there was one death from lymphoma which may have been related, and there have been rare but potentially fatal kidney problems.

At present Alemtuzimab is going through the licensing procedure. Once it has been licensed, it may be rationed, and only offered to those who have relapsed on the normal DMTs.

However, the CAMTHY trials, which are testing to see whether a particular drug given with Alemtuzimab can make the treatment safer, are currently open to anyone with MS in the UK who meets the criteria. You need to have RRMS, have had 2 relapses in the past 2 years,  be able to walk without a stick, not have Insulin dependent diabetes or thyroid problems, be under 50, and not have had previous immunosupressant drugs ( but DMTs are ok)

Because I’m not involved in the research, and don’t have the time to analyze it thoroughly, I can’t present the risks and benefits any more clearly than this at this point. You can read about the work done so far here: http://www.colescambridge.org.uk/index.htm

and about how to be referred to Addenbrookes to discuss taking part in the trials, here:

http://www.colescambridge.org.uk/trial%20participation.htm, and if you are seriously interested and meet the criteria, you can discuss the pros and cons with one of the doctors running the trial, at Addenbrookes, after referral by your GP or MS Specialist Nurse. It may be worth reminding your GP that there is not a cost to them for this referral or treatment, as the trial has its own funding.  Worth very serious thinking about.

MS Frontiers intro and OMS newsletter

I was proud to present this poster at the MS Frontiers conference – Fantastic findings re Flax seed oil – 49% less relapses in people with MS that took it, research by http://www.overcomingms.org just been accepted for publication.. Will post more info asap.

Also coming up – and important to know about if you have RRMS -Campath/alemtuzimab/lemtrada trials

and – interesting stuff from MS Frontiers conference

MS Nurse Miranda Olding presenting our poster at the MS Frontiers Conference

It has been a busy few weeks for Miranda Olding, MS Specialist Nurse, based at the MS Therapy Centre in Bedford. She was recently nominated by her patients for an award of ‘My MS Super Nurse, a competition run by the MS Trust. Click here to hear how Miranda describes her work with the MS Community.

With her holistic approach to patient care, she is a keen advocate of the OMS Recovery program and has represented us on a number of occasions, most recent of which was the MS Frontiers Conference at the Sofitel, Heathrow where she presented a poster on the current research work being undertaken by Professor Jelinek’s team at St. Vincent’s in Melbourne.

Photo: MS Specialist Nurse Miranda Olding presenting our research work in London

Recovering from Multiple Sclerosis: turning evidence into reality

Everyone knows about AMEX day by now, surely? Presented by Professor Jelinek and Dr Craig Hassed this day-long event will lay before you the recovery program and outline the evidence base that led Professor Jelinek to developing the program. The price includes all refreshments, a wonderful lunch and a copy of the book Overcoming Multiple Sclerosis: an evidence based guide to recovery to take home with you. The newly built AMEX Stadium, home of Brighton and Hove Albion Football Club is a wonderful venue with superb facilities. Ticket sales have been strong, and bookings have come in from as far afield as central Europe, but at the time of writing there are still some places left. Don’t leave it until the last minute. This event will not be repeated until the end of 2014 at the earliest. Tickets are obtainable from here

New OMS app for smartphones released!

The new OMS app for smartphones has been released. Download free from the App Store!

Our trusty team has been working away behind the scenes to bring you OMS on your smartphone.

Go to the App Store in iTunes or Google play if you have an android phone and use the keywords ‘overcoming multiple sclerosis’ and you will find the new OMS app, which you can download for free!

From podcasts at your fingertips, to recipes, and even a place to send your photos of the surprised expression of your neurologist when he sees how well you are doing! All there on the new OMS app….