Moving forward on progressive MS

Hardly a day goes by when I am not asked the tough question, “When will there be a therapy for my kind of MS?” The people asking this question are talking of course about the type of MS that doesn’t wax and wane, but instead creeps slowly or quickly along, robbing a person of crucial abilities and quality of life.

These are big issues but we are making progress. In the last couple weeks we’ve seen the launch of two new clinical trials that are aiming to stop nervous system damage in people with progressive forms of MS. These trials try to address a seriously unmet need for treatments that can stop or reverse worsening of symptoms.

One trial getting started in secondary-progressive MS is the MS SMART trial in the United Kingdom. It’s using a radically different approach, called an adaptive design, that basically pits three therapies and a placebo against each other at the outset, and then gradually people are moved to the one or two that turn out to be most effective.

The therapies to be tested are already licensed for other conditions (amiloride is licensed to treat heart disease, ibudilast to treat asthma in Japan and riluzole is licensed for ALS) so researchers know their safety profile. Each has to potential as a neuroprotective therapy – something that may protect the nervous system from MS damage to slow or stop progression. I’m excited by this trial because if it works, it could transform how we conduct clinical trials of new and ‘old’ treatments for MS in the future.

The other trial is also testing ibudilast in both primary-progressive and secondary-progressive MS. It’s testing whether this therapy can reduce brain atrophy, or shrinkage, and using other ways of measuring its ability to protect the nervous system from MS injury. 

This large, phase 2 trial of ibudilast is being done in a unique partnership of 28 medical centers (called the NeuroNEXT Network), the National Institutes of Health, and ibudilast’s distributor, MediciNova. As this trial fits well with our strategic focus to address progressive MS, the Society has agreed to kick in some financial support to ensure it is done at the best possible safety standards for people who will be volunteering to participate. 

You might wonder why ibudilast is being tried in two different trials. This is not a duplication of effort – these trials will complement each other’s results by collecting some of the same data in the same way so that we can compare results at the end. The result will speed the potential of getting this therapy – if it’s effective – to people faster.

These collaborative trials, initiated by MS doctors, are taking big leaps in terms of how the studies are being conducted. Because of their clever designs, no matter what their outcomes are, we will have a lot more information about progressive MS and how to test new therapies for it.

These may seem like steps, rather than leaps, for people who feel frustrated by the wait. But with more and more researchers taking steps like these across the globe, we are on our way to making substantial progress in this journey.

Read about other research on progressive MS here
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Timothy Coetzee, PhD

Dr. Timothy Coetzee, National MS Society Chief Advocacy, Services and Research Officer, has been a leader in the pursuit of innovative ways to move us closer to a world free of MS since receiving his PhD in microbiology and immunology in 1993. 

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  • Brad   Aug 6, 2013 9:54 AM
    I'm 36 and I was diagnosed in feb. of last year. I wake up and 1st thing I think is am i gonna be able to walk. I can't hardly feel my hands, I am already manic depressive. So many days I just wanna not live anymore. I hand when someone finds out because they feel sorry for me. I've always been the guy that helps others.
  • James Marye   Aug 6, 2013 12:57 PM
    This is good news; however, I won’t get excited just yet. The frustrating part of MS Research to me, the MS patient, is the lack of interest shown in conducting research on SPMS and PPMS. Waiting is great advice except quality of life continues to slip away, and soon it will be too late. RRMS has many treatments and support groups where as SPMS and PPMS groups are very sparse. That said, attending any support function for those with RRMS does me little good as most do not know how I feel, or what I go through each day.

    I have to ask (knowing that I will never get an answer), why has there been so little done in terms of research for SPMS and PPMS? Certainly it can’t be because we that have it, are just considered a smaller subgroup of the MS community.

    I was asked to describe how I really feel physically some days, particularly the bad days. I told the individual to wrap duct tape starting mid-waist and go around your body until you reach your ankles and secure the ends of the duct tape. Then put a pot holder on each hand and tape it to your wrist and forearm so it won’t come off. Once all this is done then try and get from your living room, family room or den to the kitchen and try and make an omelet with everything. Then you will have a good idea of what PPMS is like - at least the lack of mobility.

    Pain with PPMS ranges from moderate to unbearable. Worse, is its insidious nature that allows it to creep up on you until its just too late to fix. My feet burn 24/7, sometimes its barely tolerable and other times its down right horrible. Lyrica as well as most other drugs do little to help alleviate the pain.

  • Joan Beal   Aug 7, 2013 1:42 PM
    Until we understand gray matter atrophy in multiple sclerosis, we are no closer to finding a means of slowing progression. Experimental drug therapies make no sense without understanding the aetiology of MS. I would encourage MS researchers to work hand in hand with cardiovascular researchers, and explore the under-funded world of cerebal circulation, hypoperfusion, the cerebral enodthelium, and the connection of the brain to the heart.

    Canadian researcher Dr. Peter Stys recently received a 3 million dollar grant to look at progressive MS. Here are his thoughts on why current MS research is "barking up the wrong tree." "Let us adopt an unconventional position and hypothesize that MS is a degenerative disorder at its root, much like Alzheimer's, Parkinson's and many other progressive degenerative CNS disorders of unknown cause. As with most such diseases, the pathological process likely begins years or possibly decades before the initial clinical presentation."
  • johan   Aug 9, 2013 5:51 AM
    It’s about 7am, Bad Company is playing softly in the background and I have already had a couple cups of coffee. Just read a post from a married woman, recently a first time mom. Recently diagnosed with PPMS. She and her family are moving from their beautiful home of 10 years to a place more conducive for her uncertain future. I told her it’s nice to know fairy tales do come true. Now it’s Joe Walsh in the background.
  • docbrenay   Sep 30, 2013 2:10 PM
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells.
    I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone.
    Please read my journey and give hope to all who have none.
    Brenda J. Brenay Ph.d
    Clinical Nutritionist ~ Retired
    Here is to hope!
  • Avid_Advocate   Oct 4, 2013 1:08 PM
    I went to Dr. Brenda Brenay's website and saw her journal entries regarding stem cell therapy. Is it covered by insurance?

    Please tell us more. Thanks. Were you considered not helped by any other therapy? Is that the reason why you got this therapy? Very interested in more information. Thanks in advance.