With dozens of progressive multiple sclerosis (MS) medication “seeds” being planted, people with the condition wonder if they’ll ever see the harvest.
In ancient (and not so ancient) agrarian societies, the cold months of early spring were the most difficult for survival. Winter stores began to go off or run out completely. The new plantings — even those set in late autumn — weren’t yet ready for harvest. And, in the worst of times, the choice between short-term survival and long-term existence was faced when the seed corn was the only thing left to eat.
These days were known as “the hungry months.”
As a person living with a progressive form of MS — mine is secondary-progressive MS (SPMS) — there are many ways in which it feels like we are living in the hungry months for progressive MS.
It has been decades since the first breakthrough medications were approved for use in treating relapsing-remitting multiple sclerosis (RRMS). The first progressive-MS drug was approved last year (for primary progressive and relapsing forms of MS) but there are still no medications approved for those of us with SPMS, the most prevalent progressive form of the disease.
This is not to say that there isn’t hope for people with progressive MS. There is plenty for which to be hopeful.
According to the International Progressive MS Alliance, there are dozens of current drugs in various stages of clinical trial. An exciting figure, to be sure, but when one thinks of the time and expense of each phase up to submission for approval, it will be years before these potential treatments are on the market for use to combat the effects of the disease.
One of the hurdles to treating progressive MS has been establishing what “success” looks like.
For relapsing MS (often referred to by researchers as the inflammatory stage of the disease) one need simply look at reduction relapse rates, magnetic resonance imaging (MRI) lesion load, and gadolinium-enhancing lesions to establish efficacy of a treatment. With progressive MS, however, the mechanism of how and why progression is taking place is less fully understood.
Some of the outcomes (primary and secondary) that are being studied in these progressive MS drug trials include: brain atrophy (shrinkage of the gray matter), disability progression measured by the Kurtzke Expanded Disability Status Scale (EDSS), timed 25-foot walk, neuroprotection, and others.
It is thought that a combination of the breakdown of neural tissue (both through atrophy and nerve fiber breakdown) are likely causes of disability progression when inflammation is no longer (or to a lesser extent) responsible. Protecting nerve connections and reducing the rate of shrinkage of brain tissue are the current focus for progressive MS drug trials.
It’s a hopeful time for people with progressive MS, to be sure. Just as the thawing of ground, tilling of fields, and the sowing of seeds was an exciting time for our farmer ancestors.
Like them, however, there is time and many other factors of nature and nurture to consider before the plantings sprout and give sustenance. Many of these seeds have sprouted and are being tended by the best research and clinical minds of our age.
There will be long, hungry months ahead for people with progressive MS as we await outcomes (both positive and negative as many, if not most, research treatments do not make it through to the approval stage). Like those agrarian forbearers, we hope.
But hope without a plan is just a dream.
People living with relapsing MS might consider what their plans are for secondary-progressive MS. As the National MS Society states: “Prior to the availability of the approved disease-modifying therapies, studies indicated that 50 percent of those diagnosed with RRMS would transition to SPMS within 10 years, and 90 percent would transition within 25 years.”
These figures will likely alter downward as the effect of longer-term use of disease-modifying therapies change the course of disease for many. But they go on to say: “While MS experts agree that the medications have an impact on disease progression, it is too soon to tell the extent to which the disease-modifying treatments alter or delay the transition to SPMS.”
Trevis L. Gleason is an award-winning author, chef and blogger who was diagnosed with multiple sclerosis in 2001. He lives in Seattle, Washington and County Kerry Ireland with his wife Caryn and their Wheaten Terriers, Sadie and Maggie. His website is trevislgleason.com. Trevis’ book, Chef Interrupted, is available on Amazon. Follow him on the Life With MS Facebook page and on Twitter.