Progressive MS: Looking for answers NOW

People who live with progressive MS have many questions, but one I hear often is, “When will there be treatment options for me?” Based on what I saw and heard at last week’s AAN, I’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive MS.

Several groups presented results or updates from large, ongoing studies involving people living with primary-progressive MS: one, a study of oral laquinimod, an experimental immunomodulator,  in 375 people with primary-progressive MS which recently began recruitment ; second, a clinical trial of oral ibudilast, an anti-inflammatory enzyme used in Japan, recruiting 250 people with primary- or secondary-progressive MS; and third, a study of ocrelizumab – an antibody cousin of rituximab delivered by infusion – in 740 people with primary-progressive MS that has completed enrollment. No results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way. I hope the findings provide us with new treatment approaches for people with progressive MS. (Abstracts # P7.210, P7.017)

One aspect of research into treatments for progressive MS may not seem very intuitive: Sometimes scientists need to test treatments in people with very early signs of the disease, such as optic neuritis, an inflammation of the optic (eye) nerve that is often the first symptom of MS, much before progression is even evident. They do this because the nerve damage – and if successful, the repair or protection from damage – is more easily observed in this single location.

That brings us to exciting results from a trial led by Dr. Raju Kapoor (University College London), which recruited 86 people with optic neuritis. They were randomly assigned to receive either phenytoin – an FDA approved oral therapy used to treat epilepsy – or a placebo for 3 months to assess whether the phenytoin could help to protect the retinal nerve fiber layer at the back of the eye from damage. Of those completing the study, on average people who received phenytoin had 30% less damage to the nerve fiber layer compared to those who received placebo. The results raise the possibility of “repurposing” a therapy already on the market with a long track record of use. We need to confirm these results in a larger study to really understand if phenytoin can truly protect the nervous system from damage that leads to MS progression. (Abstract # PL2.005)

In another study, 154 people with primary- or secondary-progressive MS were given experimental MD1003 (concentrated biotin, a B vitamin), or an inactive placebo, for 48 weeks. The results showed that 12.6% of those given MD1003 showed improvement in disability, using the EDSS scale that measures disability progression or improvement in a timed walk, versus none of those on placebo, and there were no serious safety issues reported. More research is needed to figure out who might benefit from this approach and why only 12% responded. The manufacturer, MedDay Pharma, says that another trial is underway in people with MS and results are expected later this year. (Abstract #PL2.002)

Finally, I was impressed with a study from Dr. Mika Komori and a team at the National Institutes of Health that looked “behind the scenes” to try and better understand why immune-modulating treatments have not succeeded in progressive forms of MS as they have in relapsing MS. The team examined spinal fluid samples from 386 people with all types of MS as well as people without MS, to determine the exact numbers and characteristics of various immune cells. What they observed is that attacking immune cells in people with progressive MS were more likely to be holed up in the brain and spinal cord, whereas the cells in people with relapsing forms were mobile and circulating. What does this mean?  It may be that, for treatments to succeed at modulating inflammation and/or nerve damage in progressive MS, the therapies will have to be able to track the bad cells within the central nervous system. (Abstract #S12.001)

Everyone with MS lives with the uncertainty of whether it will progress and whether they will lose the ability to do the things that matter most to them. I’m encouraged by the research I saw last week and strongly believe this kind of research will drive us to find ways to stop progression and restore or repair lost function. 

Anyone can get a preview of the summaries, or abstracts, of presentations to be given at the Academy’s Annual Meeting at this link. Registration is necessary, but is free.

Tags Progressive MS, Research      4 Appreciate this
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Douglas Landsman, PhD

Dr. Douglas Landsman is Vice President, Researchh at the National MS Society. He leads the biomedical research and fellowship/faculty award programs, and plays a key role in the International Progressive MS Alliance. He has a long-standing interest in nerve-muscle interaction and developing strategies for promoting nervous system repair after disease or injury.

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  • Jay Qureshi   Apr 28, 2015 3:49 PM
    I cannot stress the importance of letting the human body compensate for it's own misgivings....natural Herb and anti-oxidant is all one needs...attempts to shut down or cripple the immune system is the stuff that Leeches as a remedy seems correct somehow~....increase the ability to repair itself, rather than cripplin' radiation treatment is never that good for the soul~
  • marsha   Apr 28, 2015 4:08 PM
    I thought ignorant comments like this would not be printed.
  • Andrea   Apr 28, 2015 4:13 PM
  • Graciela   Apr 28, 2015 4:40 PM
    My son was newly diagnosed with MS. He will be 16 next month. I'm really concern about the adequate treatments for my son because they seems to be all about money... The first monthly treatment for my son was $8000 from which my insurance deductible was $3000. The drug company offered me to waive the $3000 copay if the Dr raise the dosage from 20mg to 40 mg. The double!!! I don't know what that could cause to my son's health, but the math would do a lot of more money for the company $16000 at month. It is very sad that the health of the people is about maintaining the drugs companies rich and not about make us healthy.
  • BONNIE. McCarthy   Apr 28, 2015 5:03 PM
    I have debilitating PPMS. This makes me excited. There may be help in my lifetime. I've been living with it since'98 and am progressing steadily. Peas hurry!
  • Katrina Hallam   Apr 28, 2015 5:06 PM
    Yet another wait and wait some more.....
  • frank   Apr 28, 2015 5:48 PM
    I have secondary m.s, everything i have done in my lliife is gone,e trided yoga etc b6t i can't risse to my feet. I have wires leading off me due to the su please ra pubic cathater love life gone . I now havee ccarers 4 times a day,due to this i had to leave m. H8y job got cateracs due i.v stero7ds, who wants a blind designer hope some finds a cure.
    For us all
  • tomwilkins  Apr 28, 2015 6:06 PM
    New to this diagnosed in Jan with ppms still coming to terms with it but not letting it stop me it slowed me down can't work but it will not stop me from fighting it how do I become part of a clinical trial?
  • Robin Wine   Apr 28, 2015 6:50 PM
    I am interested in a New Drug for MS
  • Cindy Anderson   Apr 28, 2015 6:54 PM
    I'm hoping we can afford medications. Right now I can't even afford my injections. it's hard enough to be sick, but knowing there I meds to help you out there you can't get because your poor is truly a hard to take. Please make your meds affordable to us with little amounts of insurance. I just have my disability.
  • Anthony Basileo   Apr 28, 2015 7:25 PM
    I have MS since 1990 . I WAS 23 when I was diagnosed . Hopefully this will lead to something that can bring a sense of normal back to our lives. I do not want to be this way anymore.PLEASE GOD LET THIS WORK !!! I am a prisoner to my body. It is not a fun experience.
  • cindy cummins   Apr 28, 2015 11:39 PM
    united health care is denying my oral abugio. They are insisting I have to take interferon injections even though I took copaxone 8years. I have progressive ms. I had DBS surgery last year for tremors. My eye sight in rt. eye is 20/200. Have 3different organizations working for oral drug but still refused. Don't know what to do!
  • blankelement  Apr 28, 2015 11:42 PM
    Our illness at any stage sucks but for all the years that I've been diagnosed, it's a good change to see progressive types of MS are bring acknowledged more.
  • JeanLasichak   Apr 29, 2015 6:22 AM
    Where and when are studies being done with testing using L M R I? And what about adult stem cell research? and what about studies looking seriously at C C S V I? My husband is running out of time. All I see is more drugs being pushed on a people who have never been helped by them. Let's look in a new direction for a change.
  • Anon   Apr 29, 2015 7:33 AM
    Hey Doc, I have SPMS and I am a member of one of the current progressive MS research studies. Not one mentioned here. It is a double blind study so I hope you will understand the thinking behind my 'Anon'. I roll my eyes at reporting of MS research. While it is important to inform, discuss, inspire and support - too much of the positive headlining sounds like collection tin rattling. Those with MS can feel a backlash from a society believing all this hype. 'You have MS? so what - that is easy to cure - it is in the news about miracle drugs all the time.' From my perspective your report could equally say 'New drug is another crushing disappointment - 87.4% fail to respond to treatment.'
  • Karen M Phillips   Apr 29, 2015 9:06 AM
    HI I have PP MS and like all the research going on !! Keep it up!!
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    maria1  Apr 29, 2015 11:09 AM
    for cindy cummins, Try contacting your state's senior senator and ask for help. I did that when unitedhealthcare was going to make my local pharmacies nonpreferred thus charging more or forcing me to use their mail order pharmacy. unitedhealth backed down from that move.
  • Denise_A_  Apr 29, 2015 1:31 PM
    I am glad that there is research going on for Primary Progressive MS treatments, however there is still no FDA approved medications for Secondary Progressive MS. I am progressing rather quickly lately and have had two of the three Steroid Infusions I will have and after that I will have light-dose Chemotherapy Infusions, which I understand have been somewhat helpful in slowing the progression. This is anecdotal, however, not scientific. Following the anecdotal experience, I would like to know if anyone reading this has had this treatment, and if so, what is there opinion of the infusions and the results. You can respond to me via my email, above. Thank You and good luck to everyone. DAC
  • Constance   Apr 29, 2015 5:18 PM
    I'm so glad to hear about new research for those of us with PPMS. I've been aware of the clinical trial of MD1003 and thrilled about the use of biotin. Thanks for the post.
  • Debra Barton   Apr 29, 2015 11:35 PM
    Biotin as in the hair and nail biotin? What about those with RRMS like me? All MS is progressive as far as I am concerned. I was dx a year ago at 50. What prognosis do I have? Will this cure for progressive MS mean that we are closer to a cure for RRMS? I've done this for a year now and it's seemed way longer. I'm on Gilenya and have done everything I was supposed to do. Please get this disease out of me. I feel like "they" are just sitting on the cure. It would cost too many jobs and it's too big of a money maker. Please prove to me that that is wrong.
  • Wayne   May 1, 2015 12:54 AM
    Let's hope they kick goals with finding a cure or someway of making it easier to get though the days. Not only for our Benidorm but for all the families who also do it hard along side us.
  • shorty5   May 1, 2015 7:07 PM
    Yet more examples of drugs that have been evaluated for RRMS but PPMS has been excluded from the trials so the drug companies can wait a few years then trial them for progressive forms of the disease and claim a 'new application' and so extend their patents. Disgusting!

    Our system for drug evaluation badly needs reassessment and reform. The system originated because of a need to protect people from snake oil salesmen but has been debased into a system for protecting vested monetary interests at the expense of the people it should be protecting.

    I have PPMS and have been involved in a phase 3 trial of Fingolimod for the last 3 years. As you know it was approved for other types of MS in about 2008 but, as PPMS had been kept out of the previous trials, not for Primary Progressive. This has of course only removed 10% of the ‘market’ (read people who need it) and has allowed Novartis to wait a few years then run these trials and then claim a ‘new application’ and so extend their patent by about 8 years allowing them to continue to charge $3000 for 28 day’s supply.

    This highlights 2 issues. Firstly the drug has been shown to slow the progression of the disease. There would not be a phase 3 trial at all if no effect had been observed. In PPMS the average progression from diagnosis to death is about 17 years and there are no other treatments for the progression of this disease so with holding this drug from this group for 8 years is a significant sentence for these people and a serious abuse of human rights.

    Secondly the use/abuse of the system to extend the life of their patent and so allow the company to sell the drug to 90% of their market for 8 years and then start the clock again on the patent for 100% of the market at a price that is determined by how much can be screwed out of government subsidies (they couldn’t sell it for this amount otherwise) is a serious rort and amounts to fraudulently obtaining tax payers money.

    This is technically not criminal because it is not illegal but it is certainly not ethical or morally justifiable. It has denied access to this drug for the people (yes PEOPLE, patients are people) who could have benefitted from this drug for 8 years, during which time many have suffered terribly, and all in the name of company profits and, possibly, jobs for people conducting the new round of unnecessary trials. This corruption, and it definitely is corruption, is the main reason why reform of the system is so badly needed.

    Another part of the system that needs reform is the trial process itself. The double blinded, placebo controlled trial is the gold standard for identifying and quantifying effects but is not necessary in many instances for approving drugs and only serves to make trials far more expensive than necessary. Such a trial is unarguably the most accurate but what is needed is the most appropriate method of assessment. This will be the type of trial that gives the most relevant information to what the trial is assessing. If a drug has been shown to be safe and to have an effect in phase 1 and 2 trials and to, for example, slow the progression of a disease by approximately 70%, then a phase 3 trial should be unnecessary or could be simplified, speeded up and made more effective. The placebo control group could be eliminated entirely because there will always be a placebo effect in some people when the drug is available on prescription and the control is the entire medical history of the disease to date. This is not as close to an exact comparison as with a placebo control group but even such a control group is not an exact comparison. In this instance though this would be irrelevant because the placebo effect will not be 20% and the difference between ‘approximately 70%’ and ’67.32 percent makes no difference to anything. You could treble the size of the trial and perhaps calculate the results out to 67.3897348% and this would be far more accurate but gives no additional useful information.

    In this instance then if all participants in the trial were given the active drug, as opposed to half receiving a placebo, then the size of the trial is doubled and this in itself tends to even out the effects of any aberrant individual reaction.

    It is also far more ethical to give all participants the active drug than to deceive half the participants to observe their decline and suffering to be able to get a more accurate assessment of the last decimal place for the percentage effect. In fact when you know that the effectiveness is, say, 70% then the use of a placebo this way is immoral.
  • Nancy B. Polen   May 4, 2015 11:12 AM
    I am recently diagnosed PPMS. Is it PPMS because I wasn't diagnosed earlier? My best attributes have always been skin, hair and nails; but now all have weakened & are noticeable to others. Have put myself on 2000 MCG Biotin. Any comment?
  • Jody   May 5, 2015 9:34 PM
    please go to this website and read the over the counter suggestions. For progressive MS relief. It's worth a shot right. I am sick of the fact that we do the MS Walk every year. how disorganized and no t-shirt, no one starts at the same time, and we didn't even get our team photo. and still progressive MS is never where our money goes for donations. we give and my Poor Dad as you all are as well a screwed.
  • farah   May 9, 2015 6:25 AM
    what about the treatment of those who diagnosed by tuberous sceliroses
  • Stuart   May 9, 2015 9:14 AM
    I am impressed that research is taking on these new strides after having so many options for those that are RRMS, those with SPMS and PPMS desperately need results as well. Thumbs-up to the research. My thanks to Mr Landsman for providing this information.
  • Jean Lasichak   May 9, 2015 9:47 AM
    Why with all that is out there about CCSVI and progressive forms of MS do we not have a study going on here in the states to prove or disprove this??? People are traveling to Europe to get treatment because for many it works. Where are the studies??? Is it because there is no money to be made in actually finding a cure ??? As a long standing member of the MS community, as I see is more money thrown down the same old rabbit hole. It angers us to see how the money is spent , to make more drugs that don't work and cost more than most can afford to pay. Progressive people are usually on disability and have full time caregivers so there is little money to spare for these outrageously priced drugs.
  • Jean Lasichak   May 9, 2015 9:47 AM
    Why with all that is out there about CCSVI and progressive forms of MS do we not have a study going on here in the states to prove or disprove this??? People are traveling to Europe to get treatment because for many it works. Where are the studies??? Is it because there is no money to be made in actually finding a cure ??? As a long standing member of the MS community, as I see is more money thrown down the same old rabbit hole. It angers us to see how the money is spent , to make more drugs that don't work and cost more than most can afford to pay. Progressive people are usually on disability and have full time caregivers so there is little money to spare for these outrageously priced drugs.
  • Ben Said Mariem   May 9, 2015 1:15 PM
    Do you find the Tysabri (NATHALIZUMAB) efficient?
  • Marcel Lesko   May 9, 2015 9:31 PM
    Hi I'm living with Progressive MS. I'm still able to walk but with a bad limp, I'm slowly losing the control in my right leg. If possible I would love to her about the progress being made so I can still keep my hopes alive the something will be found before I'm in a wheel chair.
  • Suzanne Branch   May 10, 2015 1:08 AM
    My brother died at 38 of ppms. My 59 sister hasn't taken a step in 7 years. I retired 6 years ago because it was hard for me to get around. Now at 63, I can't take one step without a walker. I take Tysabri monthly and now I've added plasmapheresis weekly.
    The problem is , nothing stops the progression and nothing makes me better. I have Medicare and insurance. My drugs aren't costing me a penny, but they're not helping me or keeping me stable. Is it fair to spend $100,000 a year and get nothing in return? We need help!
  • Yasser kurdi   May 10, 2015 1:34 AM
    I am Yasser Kurdi of Amman. I've got M.S since the 90's. I take cortisione and lithium and lecital. All I need now is to get married.
  • Yasser kurdi   May 10, 2015 1:34 AM
    I am Yasser Kurdi of Amman. I've got M.S since the 90's. I take cortisione and lithium and lecital. All I need now is to get married.
  • ame   May 11, 2015 11:43 PM
    I have every symptom of M.S. I mean everything. Back in 2009, I started to get sick. Eventually, I was hospitalized. They did a spinal tap and said it was negative for it. Since then, I have progressed severely. Is it possible not to show up in the spinal tap in early stages? It's been 5 years now. My new doctors refer to me having it. When I have bouts of paralysis they blame it on a flare up. I'm living in hell and don't know what to do. Advice please.
  • Barbara   May 25, 2015 9:40 AM
    It's encourageing to see research for progressive ms. Those of us with progressive ms have felt neglected. There is an abundant number of drugs for RR ms. It makes no sense to ignore progressive ms especially since most people with rr also end up with secondary progressive. Thank you.
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    volvogirl  Jul 29, 2015 3:31 PM
    It seems more countries are looking for a cure for PPMS. Why is the U.S. Not? MS has been around for many many years. Different types of MS are treated differently. I have PPMS and my Neuro wants me to take meds that does not help with PPMS. I feel like a would be a Ginny pig for the medication companies. When I told him I refuse because all the data shows not helpful with PPMS, he looked at me and said I understand. It breaks my heart that they would just use people for experimental purposes. I am hoping that a cure will come up before my systems get worse
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    volvogirl  Jul 31, 2015 5:49 PM
    I have PPMS and would like that there is progress trying to repair the lesion on my spine that is causing my gait. I know other types of MS meds might help with episodes, but I do not have that problem. My happened overnight. Just want to walk normal again and being independent again...
  • Debora sa   Aug 25, 2015 4:23 PM
    My husband has Progressive MS
    I don't know what to do.
    Please help😢
  • bonnie thomas   Sep 4, 2015 2:42 PM
    I was diagnosed with ms in my mid thirties.After a year of three flares, I was
    symptom free. Fourty years later and I have full blown ms symptoms. Two and a half years ago I had a spinal stimulator implanted because I have debilating back pain. Question.....could my spinal stim have caused the ms to flare ? I am73 and I believe that I have progressive ms.
  • mrphillyman  Sep 17, 2015 5:14 AM
    As a retired nurse with a specialty in Neurology Intensive care, I find the current meds available worthless. I know this as I am a Secondary Progressive MS patient and now completely disabled. I would say to you sir, on work on a cure no more drugs that make false claims. The false claims is: The claim that this medication can reduce you exacerbations by 20% or whatever the number. If anyone believes that man oh man I feel for you. Would you say those claims. No one not even the so called experts would even say such a thing. So, that being said: How does a patient even know how many relapses they are going to have over a given period? Not a single one. The only truism there are about MS are: 1) My MS is particular to me and me alone 2) The symptoms are like buying a house, it is location,location, and location. 3) There are no cures. For Gods sake even the diagnosis is one of exclusion. What does that say about this disease? I will stop here. Thank You
  • sunshine195263  Oct 12, 2015 6:41 PM
    Very infomative
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    dmaskal1  Mar 1, 2016 2:44 PM
    I definitely appreciate this article since I have been experiencing the consequences of demyelination in my brain with which I was diagnosed in 1987, three years after receiving my Ph.D. and starting a biotech product development lab at Eli Lilly& Co. I was able to compensate for my declining short-term memory and cognitive ability until I was asked to take long-term disability in 1999.
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    oldhippie  Apr 5, 2016 10:53 AM
    I have been reading on here about all the new research that is going on around the world and this is good to know about. But when dose anything really happen? I was Diagnosed with Progressive Multiple Sclerosis a little over a year ago but the supposedly really smart Neurologist never took the time to explain what she meant by you have Progressive, not you have Primary Progressive, not you have Secondary Progressive, not a you have Relapsing Progressive just a you have Progressive. Progressive what? And all I keep hearing is soon there will be a Treatment for this kind of Progressive MS or the other , but in my book of unanswered questions is this one at the top of the list is "If you don't know what you are dealing with" then all of this news about a Treatment is meaningless.
  • Joseph Goldstein   May 19, 2016 9:59 AM
    I would be interested in participating in any studies for people with secondary progressive MS.
  • FRED LACROIX   May 24, 2016 8:41 AM
  • Brent Hofmeister   Jun 23, 2016 11:22 AM
    I live at Subic, Philippines, and wish to connect with any informed MS doctor or MS affiliated group in the Philippines ? thank you ..
  • Frank Howard   Sep 19, 2016 10:11 PM
    I have had Primary Progressive diagnosed 6 years ago. I saw an article about Biotin vitamin B7 and having developed slowness and heaviness in my right arm I decided to try it. By taking 4 tablets in the morning and 2 tablets in the evening the use of my right arm has improved.
  • RONALD   Nov 15, 2017 9:14 PM
    I have ppms doctor said 10/3/2017. Ins. will not cover it. new drug ampyra. now what to do next.
  • MICHAEL KOLENDER   Nov 28, 2018 3:12 PM
  • Jim H.   Feb 7, 2019 2:31 PM
    I have secondary progressive, don't walk, able to use one arm. was very active person looking for treatment cure. 77 years old. haven't walked for 12 years.