Research News on Secondary Progressive MS from ECTRIMS

Greetings from London, England, on the final day of the very busy ECTRIMS meeting. There have been more than 1500 research study results presented over the last few days. If anyone wants to see the depth and breadth of the research, the abstracts (summaries of conference presentations) are freely available here. Also, I hope you’ll catch other blogs by my colleagues related to HSCT, progressive MS, gut microbiome and coming up on Monday, symptoms and rehab solutions.
Beyond formal presentations, I think the best part of conferences like this one are the hallway conversations and spontaneous meetings that often lead to new collaborations and ultimately, new breakthroughs. At a conference as focused as ECTRIMS, the exchanges are, “all MS, all the time.”
I’ve heard a couple of presentations over the past few days that I found promising, since they focus on explorational treatments for people with secondary progressive MS, for whom there are few treatment choices.
You might remember my previous blog about an Oregon Health & Science University team led by Dr. Dennis Bourdette conducting a small, controlled clinical trial on lipoic acid. They provided an update of that study this week, showing that those taking lipoic acid had 66% less brain tissue shrinkage, or atrophy, than those who were taking inactive pills. This pilot study suggests potential benefits if they hold up in a larger, later phase trial. (Abstract 222)
At a previous ECTRIMS conference, Dr. Jeremy Chataway of University College London showed positive results from a phase 2 clinical trial of simvastatin, a commonly used oral cholesterol-lowering therapy. He found that the people with secondary-progressive MS who were taking simvastatin had less brain atrophy than people taking placebo. This week he presented further results suggesting that this positive effect of simvastatin against brain atrophy was also accompanied by a modest preservation of cognitive function, mostly related to memory. I’m excited that a phase 3 follow-up trial is planned to get underway in 2017. (Abstract 226)
In another study, Dr. Melissa Cambron and colleagues from Belgium looked at fluoxetine in primary and secondary progressive MS. This is the same compound as Prozac, and laboratory studies suggest it might prevent destruction of nerve axons by stimulating the energy metabolism in those cells. It also might improve blood flow in the brain. Investigators tested 40 milligrams offluoxetine given each day, in 69 people with MS compared to 68 who received placebo. The study lasted about 2 years. Unfortunately the trial did not meet its goal of reaching sustainable improvement in the 25-foot timed walk test. It also did not improve how one performs on the 9-hole peg test. While this is a discouraging result, they are still analyzing their data on cognition and imaging, so we hope to hear more about next steps for the study. (Abstract 253)
For many, the most anticipated results, presented this morning, were details from a large-scale, phase 3 clinical trial of oral siponimod in secondary progressive MS. Siponimod (BAF312, Novartis Pharmaceuticals AG) is an experimental immune system-modulating therapy, designed to act more selectively than Gilenya. It’s thought to act by keeping certain white blood cells out of the central nervous system. In August, preliminary results were announced from the 60-month, phase III clinical trial involving 1,651 people with secondary progressive MS. The trial met its primary endpoint of reducing the risk of disability progression compared with inactive placebo. Those on active treatment had a modest 21% reduced risk of disability progression compared to those on placebo. The medication showed a similar safety profile to others that work by preventing white blood cells from entering the central nervous system. (Abstract 250)
It’s great to see the emergence of new approaches to treating secondary progressive MS. I think this is just the beginning of a brighter future for people with this and other forms of progressive MS.
Tags Progressive MS, Research, Treatment      1 Appreciate this
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Mark Allegretta, PhD

Dr. Mark Allegretta is the Vice President of Research at the National MS Society, leading commercial research including partnerships developed through Fast Forward. He brings expertise in immunology and 28 years of experience in biotechnology and pharmaceutical operations to help drive the development of new therapies to stop MS and restore function.

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  • Jamie Sedlock   Sep 18, 2016 2:29 PM
    I was diagnosed with relapsing remitting multiple sclerosis and 1988 when I lived in Pennsylvania . Throughout the years I took numerous medications for my multiple sclerosis . Moved to Virginia Beach in 1993 and again took many different kinds of medicine . Then in 2009 my neurologist suggested I go on infusion once a month . The medicine was called Tysabri. Within a years time I started developing odd symptoms . I mention this to my neurologist he didn't listen he seemed like he wasn't paying attention to me when I was saying to him about the odd symptoms I was having . Within a years time long story short I came down with PML and often fatal brain infection . The doctor should've known the protocol if a patient should come down with PML . But they didn't . Never was I warned about the dangers of this medication . I multiple sclerosis was fine before I took that medicine . Able to walk drive a car I wasn't even using a cane . Now I am totally disabled and no longer walk my left arm is severely contracted. I have to rely on my boyfriend for my every day needs . Cannot longer get myself dressed etc. etc. I don't understand why they make such a dangerous and deadly drug for multiple sclerosis and other diseases . I sit in a recliner all day . 12 hours a day I sit !!! Now my body is contorted when I stand up I can no longer stand up straight since I've been sitting all day and a chair .. Now I am secondary progressive multiple sclerosis . I take no medications for my multiple sclerosis .I would love to know if there's any help for me!! I wish doctors would think outside the box here in Virginia beach.. Please if you know if there's anything for me?
  • Carmen   Sep 18, 2016 8:40 PM
    I was dx MS relapsing remitting 10 yrs ago, given Copaxone daily to 40 mgs 3x a week.I went to another neurologist for second opinion last month and had lab test. Now i am + for JC virus and read about PML effects on MS patient. Is the JC virus done only this year since it was only done to me now. I an at alost now if I would change medications, I am so worried with PML if do so.I am still ambulatory and can do activity of daily leaving. cognitive function is impaired and terminated from work because of that confuse with all this happening to me.
  • Nancy Seip   Sep 19, 2016 6:01 PM
    My son has secondary progressive MS. He is 58 years old.and lives with my husband and I. His legs barely move and is mostly wheelchair bound. I see his brain slowly deteriorating. How does one get into a clinical trial? My son, Stephen, has been on Gilenya for several years. I see no future for him and no good news for people with his form of MS. My husband is 82 and I am 79. I see my son needing a feeding tube soon and I don't know if I want to be here to see that, or not.
  • DONNA BIRD   Sep 28, 2016 10:13 AM
    I read the comments people write with desperate request for help. I am just as desperate and feel the FDA will keep supporting the pharmaceutical companies and will reject anything that will stop the pharmaceutical companies from making money. I am going to Mexico for fetal stem cell treatment next month. I hope to be out of my wheelchair or at least have less debilitating fatigue. It's disgusting that they keep treatment from us for their profit!
  • BW   Oct 8, 2016 4:30 PM
    I was diagnosed in 1989 and have tried virtually EVERY medication , both off and on label, from Avonex to Tysabri with essentially NO improvements from any of these. Recently (5 weeks ago), I did a 5 day "fast mimicking diet" (a diet that "tricks the body into thinking its a water fast despite being allowed to consume a SMALL amount (25% of normal caloric intake) of certain foods. I have followed the fast with a Ketogenic diet most similar to the "Wahls protocol". The results have AMAZED me with better mobility and mental clarity to name two benefits. If interested read about the work of Valter Longo at USC (complete reversal of symptoms in animal models. Its the most encouraging thing i have studied AND experienced since my diagnosis. Highly recommended!!
  • rihanna   Oct 15, 2016 11:46 AM
    Figure out how to arrange, compose, and screen different periods of Clinical trials according to ICH/GCP consistent route for the Sponsor, Investigator, Ethics and Regulatory capacities.

    Create nitty gritty learning and take preparing to utilize the most recent Clinical Trial programming for eClinical Trial monitoring,Clinical Trial Data administration, Regulatory documentation, including logical respectability of Data, and Fraud anticipation
  • Amanda Hutchinson   Dec 19, 2017 11:43 PM
    Hi, I was diagnosed only 5 yrs ago with RRMS and I'm now 39 yrs old with SPMS. I'm suffering a great deal and my doctor doesn't seem to really care. I've been on Copaxone the whole time. I am JC VIRUS positive. I live off of disability so stem cell therapy is out of the question unless I can come up with ohhhh 15.000 dollars. I don't know what to do anymore. My symptoms are endless and 80% of the time I'm in misery! What would be my best option having Medicaid? Thank you and God Bless!
  • nancy zeim   Dec 26, 2017 1:19 AM
    a lifetime of chronic progressive MS with remissions - cannot eat as regular people do or am not well/disfunctional in varying degrees. experimenting with "probiotics" and my gut function is improvijg, AND I am experiencing energy I cannot keep up with/ and temperment to match. I like the new energies and am most interested in learning more of this lgut theory. Yes, am 76 yrs and with MS since teens. Not ready to sit back and watch soap operas (as ojne doc suggested. Where can I get more information??
  • Judy Tinsley   Jan 23, 2018 10:23 AM
    I would be very interested to know what research has been done regarding stem cell treatment in secondary progressive and whether it is proving to be successful
  • Deborah   Feb 9, 2018 7:44 AM
    Please help me. Someone I love deeply has secondary progressive MS. He’s been bedridden for a couple of years. I don’t think it has to be that way but his caregivers really haven’t cared. He’s an easy paycheck. Instead of waking him to eat, he is allowed to continue sleeping, which is primarily brought on by sleep inducing meds. No food = No nutrients = your body begins to waste away. It’s his pain that makes him want to sleep... from the ms and non stop urinary tract infections. What can I do to ease his pain without making him sleep from Meds? If I can ease his pain, he will decide to live again. If not, he will die! He is only 56. I love him and want a life with him! Please..... please help me.
  • jean scott   Feb 15, 2018 5:08 PM
    Was happy to know about the progress being made for 2nd progresisve, m.s.
    Since I am at that stage, now,I constanly read all reports
  • jean scott   Feb 15, 2018 5:42 PM
    I just posted about M>S, prior to my reading other comments. It seems as though some people have found some things that help. I was on Avonex for about ten years, and my doctor said it was only for relapsing m.s. and had nothing else to suggest. I am taking Ampyra which is suppose to help with walking. I do not know if its helping yet.