Professor Julian Gold in Sidney treats people with HIV. He noticed that only one of his patents over the last few decades had MS, and that the disease progression in that patient had stopped – you would expect 1 in 600 people to have MS so he should have seen a lot more. He then looked at the NHS database and found that the incidence of PwMS in people with HIV was very low.
He suggests that perhaps the HIV immunosuppression antiretroviral medications have an effect on people’s MS.
There has already been a tiny trial in Denmark which links HIV+ with a reduction in MS but it was too small to be significant. Now Prof Gold is publishing the results of a much bigger cohort trial in Australia and it looks like people with HIV and all the associated medication have a 70% reduction in the chance of MS symptoms progressing. His next step is a clinical trial looking at a drug used for HIV called Raltegravir. Results should be out early next year.
It’s not as crazy as it may seem: There a link between MS and a virus infection – research that shows getting glandular fever (also known as mononucleosis) is a risk factor for being diagnosed with MS later. Glandular fever is caused by the Epstein–Barr virus (also called human herpesvirus 4) one of the most common viruses in humans. So there is something about viruses an MS. So maybe the right antiviral will affect MS progression. Maybe that antiviral is Raltegravir.
It’s all good headline grabbing stuff – miracle cures, HIV, accidental discoveries by brainy scientists… Might be right, might be wrong: So tread carefully!
Does antiretroviral therapy for HIV reduce the risk of developing multiple sclerosis? J Neurol Neurosurg Psychiatry jnnp-2014-308297 Published Online First: 4 August 2014 doi:10.1136/jnnp-2014-308297
HIV and lower risk of multiple sclerosis: beginning to unravel a mystery using a record-linked database study
BBC Inside Health
Sativex is a canabinoid treatment for the treatment of spasticity. It’s used as a spray which you squirt onto your tongue a few times daily. It’s produced by GW Pharmaceuticals from cannabis plants grown originally in their secret ‘greenhouse’ in Porton Down (also the UK government chemical weapons research facility) and more recently in the Kent Science Park, in Sittingbourne.
The usual prescribed dose is 12 spays/day
It’s a very controversial treatment for a number of reasons:
1) It’s cannabis based and some users report that they get a buzz when they take a big dose. The cannabis element also means that you need special permission to take it abroad.
2) It’s very expensive – about £8000 per year
3) It doesn’t actually seem to work. OK that’s the main part of the problem really. Only a few people respond measurably to Sativex – the “responders”. And the problem is that you also get placebo “responders”. Sativex responders only have a slightly better outcome than placebo”responders. (Notcutt 2012, Novotna 2011). The point is that in the studies both placebo and Sativex show benefits. In fact in some studies the placebo group reported a better quality of life. (Aragona 2009)
So – there are people who genuinely report an improvement after taking Sativex. They and their friends will be campaigning for it to be available on the NHS because they “know” it works. But what you don’t hear about is the similar number of people who genuinely have an improvement with a placebo spray.
Maybe we need to test people with a placebo as well as Sativex to find out what if anything they are responding to and by how much before prescribing. And then get the ridiculous Sativex price reduced. A lot.
No wonder NICE says it doesn’t work and the MS Society say it does…
Modafinil is a drug that helps you feel less fatigued and more alert. The good news is that it’s non-addictive, has few side effects and a lot of MSers say that it works really well. It’s also cheap because it’s out of patent.
The bad news is that modafinil not licenced for MS fatigue in the UK. In fact it’s only licenced for narcolepsy so you need to talk your GP or consultant into prescribing it for you off-label, getting it is not automatic.
Why no licence for MS?
1) There is no research evidence that it works. Mind you there hasn’t been much research and what there has been has only looked at taking it continuously over a period of 2 months. However MSers often take it in small doses and only when needed rather than every day.
The standard dose is 200mg daily (100 morning, 100 lunchtime) – but MSers often only take 50mg once in the morning if needed. My experience is that taking the full does makes me so awake that I have difficulty sleeping – so I’m tired the next day, so I have to take more …
2) Some side effects have been reported: rashes, allergic reactions, depression, anxiety and blood pressure. Mind you no-one in the studies reported these.
3) It’s a neuroenhancer so is massively abused as a revision drug. You take it to stay awake, think faster and feel sharper. So people are wary about handing them out like Smarties (sic).
Modafinil only works for some people with MS fatigue. So no promises.
If you can’t get it from your consultant you could try buying it over the internet from foreign web sites – but that’s just buying drugs from dealers: it’s risky – both the purity and what it’s made with are complete unknowns, there are reports of complete fakes, and tablets that cause headaches.
There was an article in The Guardian about an MSer who gets modafinil over the internet here http://www.theguardian.com/lifeandstyle/2013/may/03/brain-enhancing-drugs-mj-hyland
Simvastatin has been used for lowering cholesterol for the last 20 years. A recent trial has shown that it could slow MS progression in people with SPMS.
The trial involved 140 people over two years. 70 has a placebo and 70 took 80mg of Simvastatin. The results were that the people taking simvastatin had better EDSS scores (disability), better MSIS-29 scores (impact of MS on day to day living) and a reduction in brain atrophy (shrinkage)
Side effects were few, although the FDA has said that their is an increased risk of muscle injury (myopathy) for people taking the high (80mg) dose.
There is also an increased disk or type 2 diabetes although this is outweighed by the reduction on stroke and heart attacks.
The dose in the trial was 80mg which is the maximum that NICE allow for prevention of cardiovascular disease. It’s a lot higher than the 10mg that you can buy over the counter.
This was only a phase 2 trial – relatively small and only intended to establish that a drug has some beneficial effect and what the side effects might be. Next step is a large phase 3 trial. Sadly because the drug is cheap there is no profit so it’s unlikely to get any funding from pharma, it needs a charity to pay for it.
If you would like to get on the phase 3 trial (when and if) talk to your MS nurse or neurologist. The phase 2 trial was lead by the lovely Dr Jeremy Chataway at the National Hospital for Neurology and Neurosurgery, Queen Square, London so they could talk to him.
There is also some discussion about using simvastatin along with beta inerferons for people with RRMS.
There’s another miracle cure doing the rounds at the moment. The Swank diet is a healthy diet which is being promoted as curing MS. People are reported as having lesions disappear from MRIs (happens sometimes), symptoms improving (that’s the remission between relapses), having no relapses for years (they’re random so that’s exactly what happens)
It’s a sensible diet – lots of green veg, lots of fruit, no saturated fat, little red meat. So your weight stays down (good for everyone – and it’s more likely that you’ll exercise), you have a generous balanced intake of vitamins (good for everyone), you feel that you are taking control of your life (definitely good for everyone).
The current proponents of the diet (Dr Swank died in 2008) also encourage you to meditate (good for most people) and exercise (good for everyone).
So actually it’s common sense and good practice wrapped up in expensive books and courses promoted as a cure for MS.
Don’t buy the book. Don’t believe the hype. Do eat 5 portions of veg a day. Do keep your calories down. Do keep your fat intake down. Do exercise. Do send me money. Do wear sunscreen. You’ll feel better and live longer if you follow these guidelines whether you do or don’t have have MS.
BG-12 is a proposed new treatment for people with RRMS which is going through the approval process.
It’s taken as a tablet (which is good news)
It reduces relapses by 50% (which is average for an MS drug)
Few side effects have been reported (flushing, diarrhoea, nausea and abdominal pain).
The trials for BG-12 seems to have been successful. It’s just been licenced by the European Medicines Agency so neurologists can prescribe it.
Next step is for NICE to approve it – then the NHS is obliged to prescribe it.
Despite the title (which made me wince) Awkward Bitch:My Life with MS by Marlo Donata Parmalee is really inspiring. Considering that I’m not a girl, have never worn heels and don’t work in fashion I didn’t expect to empathise much with her but I read it end to end thinking: “so it’s not just me that gets those symptoms”, “what a good idea”, “what a useless doctor” and “if she can deal with it so can I”.
Oh, and it’s funny too. Go read it. You’l feel better.
One of the effects of MS that people don’t mention much is its effect on cognition. MS can mean that decisions are more difficult to make, you struggle to find the right words or that you say the wrong thing to someone. It can be very frustrating because you know that you are not being you. (I’m sure Freud would explain it better). People sometimes describe describe it as thinking in “a fog”.
So ironically this means that not only do you have the condition but you might find it more difficult to make decisions about what to do about it, remember what medication you are taking, what you should put on a form.
Because difficulties with thinking are by their nature invisible often even medical professionals don’t get this aspect of MS. They understand the physical impact of the condition but completely miss the fact that you are struggling to make sense of what they are telling you.
But why does MS result in cognition problems? I’ve been reading “Thinking, Fast and Slow” by Daniel Kahneman (who does have a Nobel prize for his work on making choices under risk – so probably worth at least listening to). He describes two types of thinking:- the “quick” thinking that handles intuitive things like moving your hand away from a hot surface and “slow” that deals with rational things like multiplying 17 x 24 .
He suggests that there is a finite pool of energy that supports both types of thought and that your body will prioritise system 1 if needed, and that changing focus also uses up energy.
So here’s the theory – With MS you have a bit more system 1 (intuitive) processing going on than usual – correcting balance, managing vision etc. So there is a bit less available for system 2. And when you are under stress you have even more system 1 going on as you deal with “fight or flight” and other intuitive stuff so there is even less left for rational thought. Given the reduced resources available system 2 you either slow down or give intuitive (often meaning curt or ill-considered) responses to things requiring proper consideration.
Maybe MS cognition problems are related to the more obvious symptoms rather then being a symptom in their own right. So taking the two steps of relaxing to reduce the intuitive thinking going on and being aware of the thinking process can maybe help cut through the fog.
Just a thought.
There seem to be a number of competing sources of information and support online in the UK for people with MS, their friends and family, medical professionals, social care professionals and everyone else too. So why so many, who does what and who should you use?
The MS Society http://www.mssociety.org.uk/ is the biggest MS charity. It seems to focus on people with MS as well as their friends and family. The MS Society do campaign, support professionals and fund a lot of research as well. They have some good leaflets and a free helpline providing information over the phone as well as sending out booklets and providing emotional support on 0808 800 8000. The website is a bit hard to navigate though. The MS Society has a nationwide network of local branches who do a lot of social stuff as well as fundraising. If you join (£5/year) you get a monthly local newsletter as well as a glossy magazine. The web site has a fairly active forum too.
The MS Trust http://www.mstrust.org.uk/ is aimed a bit more at medical professionals – but they do have a lot of information for non medical people too. They have a good information helpline on 0800 032 38 39 and will send out their neat and clear leaflets/information sheets.
http://shift.ms/ Shift.ms is a social network run by its users where young MSers meet share experiences and support each other. They have a growing web site – it’s aimed at young people with MS. No helpline but a lot of peer support.
The MS Resource Centre has just renamed itself MS-UK. http://www.ms-uk.org/ While the site looks slick and professional they are quite small and indiscriminately keen on reprinting press releases about cures and new treatments. They tend to cut and paste anything MS related they can find. Because of this they often champion treatments that in retrospect have no effect on MS (or worse). They have a helpline on 0800 7830 518
Gavin Giovannoni is an MS consultant with a blog http://multiple-sclerosis-research.blogspot.co.uk/ . Gavin (Prof Gavin) is a very colourful character and has some strong opinions. His blog seems to try and capture any research that might be medically relevant to MS and is full of new ideas, slides from the may presentations makes and research which may or may not turn out to be relevant. So while he does have useful and interesting information for MSers it is often buried in a mire of irrelevant stuff. The site is great though for people specifically studying MS. It’s also good for those who like to ‘cherry pick’ information to support their ideas.
There are MS groups on Facebook too – but it can be difficult to pick your way through the different nationalities (who have different drugs and support available) and past the people who seem to have an awful lot of time to troll or promote their own agenda.
And of course you can talk to or email your MS Nurse, GP or Neurologist!
The first of the oral Disease Modifying Drugs. Also known as Fingolimod.
It is licenced for use in the UK, but only for people who are not responding to the injectable beta interferons (Avonex, Rebif, Betaferon or Extavia). It reduces relapse rates by 50% and slows down disability progression by 30%. (Although how you measure disability progression numerically is quite a question)
Inevitably there are side effects like headache, diarrhoea, back pain, cough and dizziness. These are generally mild. Some people pick up illnesses and infections more easily while taking Gilenya.