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:

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