Dr. Edwards and the MS Center of Northeastern NY are collaborating with Dr. Gavin Giovannoni, Professor of Neurology & the Blizard Institute, London, UK on several projects. Dr. Edwards had paid a visit to the Blizard Institute in October 2016 to see the lab and meet with Dr. Giovannoni’s team of researchers. Here below is a link to Dr. Giovannoni’s blog post featuring Dr. Edwards Barts MS Blog
Ocrelizumab (Ocrevus), an IV infusion therapy, is well on its way to becoming the next FDA-approved treatment for MS. Clinical trials have shown the B-cell modulating drug to be effective at reducing relapses and delaying disability. MS Center of Northeastern NY has been a study site involved in this clinical trial from the start for Relapsing Remitting MS and are now enrolling two new studies with ocrelizumab. As always we are so grateful to our patients who volunteer to participate in clinical research so that advances like these can be made, which bring us closer all the time to ending MS. (Refer to link above for list of study site centers and we are listed as Latham, NY study site).
Dr. Edwards presented a research paper on “Treatment Satisfaction in multiple sclerosis” at the 24th Annual Meeting of the European Charcot Foundation in Baveno, Italy on November 25, 2016
Dr Edwards missed Thanksgiving with his family to present research findings in treating MS with a focus on ‘Quality of Life.’ The meeting was in town of Baveno, on Lago Maggiori, north of Milan, from November 24 to 26. “Europeans do not celebrate Thanksgiving, of course, and this is when this unique Society holds the annual meeting each year. When I was asked to be the presenting author of this international study, I could not say no,’ stated Dr Edwards. “Qualify of Life in MS can never be taken for granted. There are many silent symptoms of MS beyond the obvious. Fatigue, cognitive problems, bowel and bladder control issues and pain do not show. Side effects from treatment should be little or nothing and the treatment should be safe.”
Title of the presentation: “Improvement in Patient-Reported Treatment Satisfaction with Teriflunomide.” Research collaborators and co-authors included Dr. Patricia Coyle, Director of the MS Center and Chairperson of Neurology at Stony Brook University; Dr. Ralf Gold, Director of the MS Center at St. Josef Hospital, Bochum, Germany; Dr. Bhupendra Khatri, Director of the Regional MS Center, Milwaukee, WI.
To view the poster, go to ‘scientific meetings’ and click under Charcot meeting.
Submission to a major neurologic peer review journal with the full findings of the study is underway.
Current available management of MS can now limit, stop, or improve disability for the majority of patient with MS. The management needs to be appropriate, safe, and effective to be of value. No longer is it acceptable to continue a failed treatment.
Management and treatment begin with good general health from diet and exercise to control of any other disease that may be present including diabetes, elevated cholesterol, pulmonary or renal problems. Recurrent infections from urinary infections to bronchitis from smoking can accelerate disability in MS. Injuries from falls or unnecessary surgery cause tissue damage that have consequences of themselves, but also can increase immune regulation in response to injury or surgery to accelerate disability in MS.
Specific drug treatments for MS that are called “disease modifying treatments” have been available since 1993 with the FDA approval of Betaseron. All of these treatments were injections until 2010, when Gilenya was approved as the first oral medication. However, side effects and potentially dangerous blood, liver and infections may be associated with any of these medications. The effort to have more effective and yet safer treatments has been the most important goal in treatment development for combating MS.
Currently available disease modifying medications, along with another to be hopefully approved by the FDA at the end of December, give current MS hope for more effective and safer medications to control this disease. The goal of “no evidence of disease activity’”can now be achieved in the majority of MS patients.
Keith Edwards, MD
Director, MS Center of Northeastern New York, Latham
Assistant Clinical Professor, Harvard Medical School, Boston
October 30, 2016
Multiple Sclerosis (MS) remains a challenge for many individuals who have disability. It remains the most common cause of disability for young adults other than trauma.
Recent information from the European Committee for the Treatment and Research in MS (ECTRIMS) continues to be more encouraging than ever. It is not that there are no significant challenges for MS patients, but treatment for prevention of disability and even recovery is improving.
Just like many other conditions, from breast cancer, high blood pressure and heart disease, the earlier the diagnosis and appropriate treatment, the less likely that an individual will have disability. An increasing number of patients on appropriate treatment have “No Evidence of Disease Activity” (NEDA)
What is NEDA, how long has this concept been used and how can it help me?
NEDA: No Evidence of Disease Activity. 1. Freedom from relapses 2. Freedom from new disability 3. Freedom from new MRI activity. This was first published in 2009 and now at the 2016 ECTRIMS, dozens of papers were presented on this subject.
The point of NEDA? It is the goal of MS treatment: To stop this disease. That includes management that every person should have: good diet, control of infections, some diet rich in vitamin D, no smoking, control of any other diseases such as diabetes, high blood pressure and a positive attitude. Medications may include rapid use of IV steroids to stop an exacerbation and limit disability to preventative medications (also called Disease Modifying Treatments) that are appropriate to prevent further exacerbation and to control MS.
What about safety of medications? That is improving as long as the doctor and patient each are aware of the risks and benefits of any treatment and follow appropriate guidelines. All medications need to be chosen for the right reason for the right patient. That also means monitoring liver, kidney and blood at regular intervals. The treatment should be appropriate to control MS with little risk. We see all new patients about one month from first beginning a medication and then every 3 months until it is known that the treatment is safe and effective.
What about recovery from disability? First of all, the MS needs to be in control. Then, depending upon degree of disability, age, and many other factors, many MS patients then can improve due to ability to exercise to overcome any ‘deconditioning’ from inactivity, to have more hope, and also to actually have some regrowth of myelin. There are several research studies in progress designed to allow ‘demyelination’ or recovery of myelin.
What should I do: 1. Take good care of yourself including high vitamin D diet or Vitamin D supplements, 2. If you smoke, stop, since smoking is irritating to the lungs and increased the immune system to make MS worse, 3. Have a good support system of family and friends. Do not be too shy to ask for assistance or a ride to the gym or swimming pool, 4. Know your choices in treatment among various health care providers and treatments. Any MS Center that is recognized as a “Comprehensive Care Center’ by the National MS Society (NMSS) has MS specialty trained neurologists and nurses along with a ‘team’ approach for your care.
Keith R. Edwards, MD, FAAN
Director, MS Center of Northeastern New York
A Comprehensive MS Care Center affiliated with the NMSS, since 2010
Assistant Clinical Professor, Harvard Medical School
Dr. Edwards will be attending the 32nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis meeting (ECTRIMS) being held in London, UK September 14-17. He is the first author on two posters and a co-author on several others. (List of posters) We look forward to Dr. Edwards bringing back the latest news from that meeting.
Current available management of MS can now limit, stop or improve disability for the majority of patient with MS. The management needs to be appropriate, safe and effective to be of value. No longer is it acceptable to continue a failed treatment.
Management and treatment begin with good general health from diet and exercise to control of any of disease that may be present including diabetes, elevated cholesterol, pulmonary or renal problems. Recurrent infections from urine infections to bronchitis from smoking can accelerate disability in MS. Injuries from falls or unnecessary surgery cause tissue damage that have consequences of themselves, but also can increase immune regulation in response to injury or surgery to accelerate disability in MS.
Specific drug treatments for MS has allowed improvements in the ability to stop progression of disability. No Evidence of Disease Activity (NEDA) currently is defined as:
- 1. Freedom of relapses
- 2. No progression of disability
- 3. No new lesions on MRI
We know that cognitive dysfunction in MS is the most common cause for disability so that ‘no progression of disability’ means no loss in any neurologic function from MS including cognition, bladder and bowel control, balance and many other aspects that are not easily measured in a standard office visit. Comprehensive Care MS Centers as certified by the National MS Society are best able to provide that care.
The Consortium of MS Centers has published guidelines for treatment and management in MS including the recommendation to change a disease modifying drug after 6 months if there is evidence of continued MS activity or progression of disability. It is no longer medically appropriate to let a patient progress in MS any more that a cancer specialist would let a cancer spread without at least a serious discussion of alternative treatments. It is not ‘aggressive’ treatment to appropriately stop progression of disease in MS with a more effective drug that is safe and well tolerated. There can always be side effects and risks in any treatment of any disease but this needs to be balanced in consideration of progressive disability in MS and the total effects of one’s life and health to have this disease progress when there are many alternative treatments.
No Evidence of Disease Activity means health and a future with MS in control.
Dr. Keith Edwards
Here is an amazing video of our patient horseback riding. She was motivated by Dr. Edwards to be active in spite of her MS. Read more here.
ZINBRYTA (generic name, daclizumab) was FDA approved recently for relapsing forms of MS. The MS Center has been using this medication in clinical trials for 10 years. This medication was previously used for renal disease under the name of Zenapax since 1997. This medication modulates, or regulates, a specific immune process in the human body that can misguide certain lymphocytes (white blood cells). Zinbryta is given subcutaneously (under the skin) just once monthly. Side effects have been largely limited to local skin irritation for a day. There are no flu-like side effects. Liver function tests are monitored due to rare liver reactions. The treatment effect was found to be significantly better to Avonex in a head-to-head study. It is meant to be used after one or two standard MS treatments have failed. Dr Edwards has been a co-author on several scientific papers and presentations involving daclizumab studies including efficacy, safety and quality of life satisfaction measures. The entire treatment staff at the MS Center are knowledgeable about the benefits and side effects of daclizumab. This includes the other providers, Lore Garten, MD, PhD and Karen Wesselhoeft, NP.
Analysis of Relapse Events in the DECIDE Study Using a Novel Weighted Hurdle Model – Presented at the American Academy of Neurology 68th Annual Meeting, Vancouver, Canada 2016
Patient-Reported Outcomes in Patients with Varying Clinical Disease Activity of Relapsing-Remitting Multiple Sclerosis in the DECIDE Study” Presented at 2016 Annual Meeting of Consortium of Multiple Sclerosis Centers, Maryland
Analysis of Relapse Events in the DECIDE Study Using a Novel Weighted Hurdle Model. Submitted to LACTRIMS Latin American Committee for Treatment and Research in Multiple Sclerosis – IX Congreso Latino Americano, Beunos Aires, Argentina
It has been known for over 50 years that there is less MS in populations that have more sunlight, with the exception of Northern Scandinavia where fish consumption is high. The common factor is Vitamin D.
There is yet another research paper published this week in the Multiple Sclerosis Journal (issue April 1, 2016) showing the benefits of high amounts of Vitamin D3 in patients with MS. This study evaluated the recovery of patients from acute optic neuritis. Those patients who had Vitamin D levels of OVER 80 nmol/L (25 hydorxy) had a significantly better recovery at 6 months after the attack than those patients with lower levels. The retinal nerve fiber layer (RNFL as measured on OCT ocular coherence tomography) was an average of 134 micron compared to 95.
That means that a lot more nerve fibers were preserved/recovered with better levels of Vitamin D3. The research was published from the Hotchkiss Brain Institute, University of Calgary.
We have been recommending AT LEAST 5000 u Vitamin D3 daily for our MS patients for the last 10 years, along with a healthy diet including high Omega-3 fish, dairy, and dark greens.
There is no Vitamin D toxicity, but a restriction might be considered with patients with renal failure due to high calcium levels. Otherwise, enjoy the sunshine, fish, spinach and milk just like your mother always told you!
Keith R. Edwards, MD, FAAN