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.
I want to pick up where Trevis left off – talking about how he and his wife confronted fears about the future and advanced MS by getting to know more about the “enemy". Fear of the disease can be disabling, sometimes more than the disease itself. Fear can literally stop people in their tracks.
So the best strategy is often to think about what frightens you the most (which will be different for every individual) – whether it’s reduced mobility, loss of employment, threats to your independence, a shortened life expectancy, or anything else – and work proactively to help yourself feel less vulnerable, safer, healthier, and more in control. The next step is to get educated about the issue or issues that scare you and take steps to build your safety net. And if you’re not sure how to go about that, an MS Navigator can guide you.
Following last week’s webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we sat down with Dr. Brenda Banwell, MD, to get answers to your questions about vitamins and supplements that are potentially helpful and harmful for people with MS.In addition to Vitamin D, what other vitamins or supplements do you recommend taking on a daily basis to help MS?
There really isn’t anything else that’s even close to vitamin D in terms of research support for its use in MS. However, I do a blood test of the serum levels of vitamin B12 to make sure my patients aren’t deficient. Vitamin B12 deficiency has a negative impact on myelin, which is important for neurological function and is a particular target in MS. In fact, B12 deficiency can actually look like MS in some patients, and having low B12 if you have MS can further compromise the brain and spine. That said, healthy people who are eating a regular diet are rarely deficient in B12, and if you have normal levels, taking additional B12 has no proven value. People who are on some extreme diets or don’t eat red meat are more likely to have low levels and should be treated if that’s the case.
During last week’s webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we received a number of questions about vitamin D. We sat down with Dr. Brenda Banwell, MD, following the webcast to get answers to some of the most popular questions you submitted.How much vitamin D should a person with MS be taking?
The graph below shows the current recommendations, for the general population, according to the Canadian Food Guide. If you are living with MS, I would recommend that you work with your healthcare provider to obtain your Vitamin D blood levels (also called a 25-hydroxy Vitamin D), which is a measurement of the circulating Vitamin D in the body. Vitamin D levels should be around 75 nanomals per liter (Canada) or between 40-80 nanograms per milliliter (United States).
I have been interested in the effects and side effects of smoked cannabis for many years. Having been involved in multiple sclerosis research and patient care, I’ve had a significant minority of my patients report smoking cannabis on a regular basis – indicating that it helps with pain, spasticity or both.
In a disease without a cure, such as MS, good symptom management is important and if indeed smoked cannabis is proving helpful, then these potential benefits need to be weighed against the possible side effects of further cognitive dysfunction.
The Unspeakable Bits; From a Life with MS
4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
I guess my fascination with the immune system started when I was a kid with bad asthma. I was always on steroids or some type of shot, and I didn’t understand why other kids were well when I wasn’t. Why was my immune system so over reactive compared to other kids? Doctors were heroes who made me feel better (even with all the shots), and that heroism was part of what drew me to medical school. I also loved learning about the brain – which is really “who we are.” This made the study of the immune system attacking the brain a perfect area for my career.Fast forward to today, 22 years into a career studying multiple sclerosis. One area I focus on is studying gender differences in MS. Women get MS three or four times as often as men, and when men do get MS it’s usually more progressive. Why? That’s the sexy part – sex differences I mean. To this end, we are pursuing whether differences in sex chromosomes or normally circulating levels of sex hormones impact disease susceptibility and disease progression. Another area is related to pregnancy. In the third trimester of pregnancy, women with MS see up to a 70 percent reduction in relapse rates. So, my research teams and I are currently testing pregnancy levels of the hormone estriol administered in a daily pill (hormone or placebo) to non-pregnant women with MS. In our two-year multi-center trial where all participants have relapsing-remitting MS and use Copaxone, the primary outcome measurement is frequency of relapses. In our new one-year trial, the primary outcome measurement is cognitive improvement; this trial includes women with relapsing remitting as well as secondary progressive MS who use any FDA-approved disease-modifying treatment. We’re testing estriol primarily because it’s unique to pregnancy, it’s safe, and because it helped improve lost cognitive function when administered to mice with experimental autoimmune encephalomyelitis (EAE: the “mouse form” of MS). Mice with EAE have cognitive effects similar to those in MS – demonstrated by their behavior and in lost nerve endings (called synapses) – and in mice with the MS model of disease, estriol treatment improves that behavior and rebuilds those nerve endings. Amazing!I hope you’re as excited as I am at how close this means we are to finding a treatment that is neuro-protective (serving to protect neurons/nerves from injury or degeneration) and could therefore have disease-halting capabilities, and maybe even some improvement effects. How novel that a naturally occurring, safe pregnancy hormone could prove to protect neurons from further damage, effectively stopping MS in its tracks! We’ll share results in 2014 and 2015. Today, thousands of people are gathered at our nation’s capital for the Rally for Medical Research – to raise awareness of the critical need to make funding for the National Institutes of Health (NIH) a priority. You don’t have to be there in person to show your support! My research would not be possible without funding from the NIH and the National MS Society. While the pharmaceutical industry is extremely important to bring new therapies to market, it’s hard for them or other investors to support research into products such as naturally occurring hormones or generic solutions because they won’t be as profitable. Academics like me are out there doing novel research toward new treatments not only to slow MS, but to stop and reverse it, through the pathway of NIH, Society and other generous donor funding and partnership. You can support this pathway, not just through donationsto the Society, but through activism. Ask your member of Congress to preserve funding for the NIH – it’s one email with a potentially HUGE response.If I had to give one piece of advice to people with MS, it would be: please keep faith that the treatments are coming – they’re getting better all the time! There are thousands of people like me who go to work every day to bring you better and more treatment options; comment below if you want to hear more about our sexy MS research.
I was thrilled to see that another oral therapy for relapsing forms of multiple sclerosis* has been approved by the FDA. With the arrival of Tecfidera (formerly "BG-12"), which should be available by prescription any time now, there are three oral therapies and a total of 10 disease-modifying treatments available in the U.S.
When I was diagnosed in 2001, there were just four therapies available. I take the fact that that number has more than doubled – and that options have expanded to include oral therapies in addition to the injectables – as a sign of the progress science has made in tackling this mysterious disease.
Having a new oral therapy on the market also makes me wonder, as I have several times in the past, whether I would be inclined to trade my daily injections for pills. I have been on the same therapy since I was diagnosed, and I have to say I’ve grown pretty attached to it.
Not that I like the big dents in my legs where the shots I give myself have degraded the underlying tissue. Nor am I a huge fan of the blue bruises on the undersides of my upper arms that mark the spots of those injection sites. And sometimes the shots I give myself in my belly just plain hurt. But I am thankful that I have never had a problem with my medication – and double triple thankful that the stuff, knock on wood, seems to be doing a great job at keeping my disease at bay.
Such a great job, in fact, that I don’t think I’d be inclined to switch to an oral therapy just for the convenience of it. But for all my fellow MSers whose therapies aren’t proving sufficient, and for all those newly diagnosed people who are sorting through their therapeutic options, I’m thrilled that this new pill’s available and that more are on the way.
You can read more about Tecfidera here and about the full array of MS therapies here.
*People with relapsing-remitting MS and people with secondary-progressive MS and progressive-relapsing MS who continue to have relapses
I’m excited to be reporting from the American Academy of Neurology (AAN) meeting in San Diego; it’s quite impressive to see large auditoriums overflowing with neurologists and other professionals attending presentations about emerging therapies in MS. Over the next few days I will share what I believe to be the most interesting MS research being presented here.One study I’m particularly intrigued by is a small trial of the blood pressure medicine, Amiloride, in 14 people with primary progressive MS. Amiloride had been shown previously to have neuroprotective properties – the study authors found that treatment resulted in a lessening of brain shrinkage associated with progressive MS. I am looking forward to seeing if this medication has similar effects in a larger study underway in the United Kingdom.
Another study of over 1000 people with MS is underway – designed to determine if Gilenya can slow down disability in primary-progressive MS, compared to placebo, after 3 to 5 years of treatment. I also find it encouraging that several other large studies like this for progressive MS are currently in planning or underway.
While there have been many successful new therapies introduced in the past two decades, most prove ineffective for people with progressive forms of MS. What excites me most about these studies is that they aim to bridge this gap and offer hope for real treatment options for people with progressive MS.
The first results of a phase III trial of peginterferon beta-1a in relapsing MS are also being presented. The study is testing a new formulation of Avonex that should stay in the body longer than the standard treatment. Successful trial results could mean that the frequency of dosing could be extended to as long as once every four weeks – reducing the frequency of injections.
I also attended presentations on various outcomes from extension trials of BG-12 and alemtuzimab. Researchers continue to add to our knowledge of the risks and benefits of these two meds currently being evaluated by the FDA for the treatment of relapsing MS. Studies are also underway on other emerging therapies for MS, including ocrelizumab and daclizumab HYP. Results will be shared on our research news as they become available.
More treatment options ultimately means that people with MS have a better chance of finding a therapy that fits their specific needs and lifestyle while reducing the frequency or severity of MS attacks or disease progression.
This is just a quick glimpse of some things that stood out for me so far – I will be sharing more, so stay tuned. Visit AAN’s website for brief summaries (abstracts) of the meeting.
"For a long time now I have been aware that you are taking up more of my life everyday..." - W.H. Auden, Letter to a WoundMy Valentine Ian gave me the most extraordinary present this year: a gleaming silver oligodendrocyte on a chain: Like a starfish, but smoother, less symmetrical, reaching in all directions. Oligodendrocytes are the cells that repair and create myelin, the insulation stripped away by multiple sclerosis. I picture my brain’s oligodendrocytes wrapping their many tentacles around my scarred axons, feverishly working to insulate my nerves. They wear happy, determined faces. But it’s more complicated than that. Now I imagine them lounging on what must be a couch of a partially myelinated axon, chatting, dozing, or just slacking off. As I learn more, the picture changes: these oligodendrocytes have done their work and have retired. They would like to help, but they need more recruits. Research into making the cells that could create those new recruits and remyelinate MS lesions, possibly resulting in restoration of lost function, is just one of the many areas of investigation that might help us understand and possibly cure MS.
I treasure this necklace. It holds symbols of protection and repair. Many years ago Ian gave me my ex-fiancé’s first novel, which I’d helped along in early drafts. On the gift tag he wrote, “I hope I can always give you what other men can’t.” Now, he’s given me a symbol of something my body can’t fully offer.
A friend recently told me she’s had MS 13 years. That’s about as long as Ian and I have been married. Which brings me to the realization that my relationship with MS is the longest-running relationship in my life, twice that of my marriage. Like Auden and his wound, “nothing will ever part us.”
My first eight years with MS were fairly uneventful. I could forget about the disease sometimes. With no treatment options available, I simply adapted. Sometimes, though, riding my horse over jumps in horse shows, I would feel MS passionately seize my hand so I felt nothing else and dropped my rein. He at least was kind enough to do this only on the side the judges couldn’t see. (I will henceforth refer to MS as a he, but he is invisible, inaudible and rather unpredictable, most likely genderless.) Minor symptoms would bring me down to earth, I thought; forgetting was the reward. After a few years, MS decided I should quit riding and training regularly. He can be a bit possessive.
When the first disease-modifying therapies (DMTs) became available, faculty in my graduate program would stop me in the hall, asking if I was hopeful about the latest medication. My standard reply: “but that would mean saying good-bye to an old friend . . .”
“Yes, but MS is not such a good friend,” a poet wisely replied in his melodic Polish accent.
Gradually, MS visited more often, gripping my left leg, pulling it back with each stride, or hitting my head with the boxing glove of dizziness. I always came back to baseline after the flare miraculously left, so I could still forget about MS for long stretches of time. About a dozen years after diagnosis, I was put on disease-modifying therapy. I learned that this did not mean saying good-bye to my friend; rather, it reminded me that even when MS wasn’t making his presence known, he was still around. Depending upon which medication, injections at regular intervals would remind me that MS was imperceptibly slipping his arm across my shoulders, particularly close to my spine.
I no longer forget about his presence. In fact, I am grateful for the days I walk without having to think about each step, or when I can walk my dog, fingers deftly wrapping the leash, after the hard work re-learning how to use them. My amber-tinted contacts and glasses cut most glare, pain that never quite left after optic neuritis. The lenses turn my eyes coppery, beautified by illness and treatment. My vision is literally colored by my disease. Thanks to MS research I take medications I never thought possible to mask other lasting symptoms such as spasticity and pain, helping me forget, but not quite. The treatment makes me remember. Also, literally, a pill helps my memory.
MS ultimately cannot be forgotten. It is both my friend and foe, intermittent but lasting. If I am an MS activist, I know it is through awareness—my own, and creating it in others—in my teaching and writing, in everyday interactions, knowing that the disease is so deeply linked to who I am and what I do.
We mustn’t let anyone forget, least of all ourselves. Or Congress. This week over 300 MS activists are meeting with federal legislators on Capitol Hill to urge continued funding for MS research and the FDA, standing up for those of us whose stance is words, for those of us whose stance is experience, for those of us who may know weakness, but turn our weakness into a source of strength.