MS News That Caught My Eye: Cannabis Gum, Ocrevus, Misdiagnosis and Other Stories
The MS Wire is adding a third weekly item, beginning today. It’s a list of several news items that appeared in MS News Today over the preceding week and that caught my eye.
Axim Signs Deal to Advance Clinical Trials of Cannabis-based MedChew Rx Gum to Treat MS Pain
Studies are focused on a cannabis-based chewing gum to treat MS pain. The gum contains CBD and THC and is being tested in the U.S. and Europe. According to a drug company official, “The development of MedChew RX gum will be carefully formulated to ensure that the drugs are preferentially absorbed orally within a specific window of time to provide the best therapeutic outcome for the patients.”
Where do I go to sign up?
Axim Biotechnologies recently announced that its U.K. partner, Quay Pharmaceuticals, has secured licenses from the British Home Office to continue developing and importing its medical cannabinoid product MedChew Rx — a potential treatment for pain and spasticity in people with multiple sclerosis (MS), among other illnesses.
MedChew Rx is a gum containing 5 mg of cannabidiol (CBD) and 5 mg of tetrahydrocannabinol (THC). The gum is intended to offer patients more consistent relief than existing cannabis-derived products that are smoked or eaten.
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Two Women with Different Forms of Multiple Sclerosis Call Ocrevus a Lifesaver
Two MS patients who participated in clinical trials of Ocrevus tell their stories. They provide some excellent views about weighing the risks, and benefits, of taking this new drug.
Pamela Arterbridge noticed something was wrong back in 2013 when she woke up one morning, and her legs and feet were tingling.
Two years later, Lorraine Lee knew she had a problem when her right leg became extremely fatigued after every workout.
Neither realized their eventual diagnosis would be multiple sclerosis (MS).
“I can now walk around in my house without a cane,” Lee said of the treatment. “Last year I could not.”
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MS Patients Seem to Present Earlier Symptoms of the Disease
This report comes as no surprise to me. It verifies what lots of MS patients believe: that they developed MS long before anyone diagnosed them. Here’s what Canadian researchers found when they reviewed over 30 years of health records.
Patients with multiple sclerosis (MS) may be developing the disease for up to five years before the first clinical diagnosis is made, a study has found.
The study, “Health-care use before a first demyelinating event suggestive of a multiple sclerosis prodrome: a matched cohort study,” was published in the journal The Lancet Neurology.
The findings suggest the existence of a measurable MS prodrome, an early set of signs and symptoms that can indicate the onset of demyelination occurring in MS patients. If this is the case, it may allow for the establishment of an earlier window of opportunity to identify and potentially treat MS.
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MS Patients Struggle with Misdiagnosis and Ineffective Treatments, Survey Finds
This report goes hand-in-hand with the previous story. It’s difficult to diagnose MS and results in early treatments often fail to help. Half of those surveyed say they had to make nearly half a dozen doctor visits before getting a diagnosis, slowing their treatment. That shouldn’t happen.
A significant percentage of multiple sclerosis (MS) patients struggle with improper diagnoses and ineffective treatments, a national survey of more than 5,300 patients found.
The fifth annual survey, “MS in America 2017,” was conducted by Health Union between Jan. 25 and March 1, 2017. It was released through the MS online community.
Another survey finding was that fatigue and pain are two of the symptoms that have serious impacts on patients’ lives.
People with multiple sclerosis said an accurate diagnosis can prove difficult to obtain. Almost 50 percent of respondents reported having to make more than five office or hospital visits before receiving their diagnosis.
Forty-two percent said they were mistakenly diagnosed with other conditions, including depression, migraine disease, fibromyalgia, or chronic fatigue syndrome.
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Lemtrada Might Outperform Ocrevus in Preventing MS Relapses, Italian Researchers Say
I’m being treated with Lemtrada. After Ocrevus was approved I mulled over whether I should switch from one drug to the other. My decision was to stick with Lemtrada. This study, paid for in part by the company that makes Lemtrada, seems to support my decision.
Lemtrada (alemtuzumab) may be more effective in preventing relapses in multiple sclerosis patients than the newly approved Ocrevus (ocrelizumab), according to a study presented April 28 at the American Academy of Neurology (AAN) 2017 Annual Meeting in Boston.
The study, supported by Sanofi Genzyme and Bayer HealthCare Pharmaceuticals, compared the two drugs using an analysis of how many patients need to be treated to prevent one additional bad outcome. This type of analysis, called “number needed to treat” (NNT), allows comparisons of drugs in the absence of trials that compare different drugs side by side.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Frank Trovato
My predominately consistant MS symptoms are...numbness (bottoms of both feet & both hands)...right ankle & knee malfunction (inability to lift my foot (ankle to toes) and lower leg (knee to foot). Right shoulder (inability to raise arm past shoulder level). Right hand (inability to maintain proper finger posture...weakness).
I do push through these symptoms, every minute of everyday by doing required functions, though very slowly, to live. Functioning at a much slower rate than others do, including myself before MS, is the disabling aspect of "my" MS....every minute of everyday...no remmission period...no break....
richard thomas
I have both ms and pd. I hear you. Hoping to start ocrevus soon. Hang in there-maybe stem cells soon?
Laura Drake
You note that Lemtrada may be more effective in treating MS than Ocrevus in preventing MS relapses. I think a notation/correction should noted for patients who have chosen to take Ocrevus for Progressive MS, where preventing relapses are not a part of the drug treatment program. Ocrevus in Primary Progressive MS has been shown to reduce the progression of MS and not relapses.
Ed Tobias
Hi Laura,
Thanks for your comment, which is well taken. You may want to also attach that comment to the original news story. I simply selected that story it as one of several that interested me, last week. I wasn't its writer.
Ed
Deacon Sam
I am a healthy 71 year old man who does not have MS. My 45 year old daughter has been living with MS for the past 10 years. Although she is doing reasonably well (soon to begin Ocrevus therapy) I have been suggesting that she join an MS support group. Any suggestions on where to start? She lives in Hoboken, NJ.
Ed Tobias
I'm glad that things are going well with your daughter. She shouldn't have any trouble finding a group in or near Hoboken. I'd suggest that she look at the National MS Society website: www.nmss.org. She can then click on "In Your Area" (near the top of the home page) to find activities and groups near her.
Best of luck to her,
Ed
Harry Crawford
In most articles that I've read Lemtrada does well on the relapse issue but I haven't seen much on it actually helping patients gain points on the disability scale as Ocrevus has shown many to actually have at least one to three points better on the disability scale. To me that's the important part. Getting your life back.
Tim Bossie
Hi Harry. That is a good point that you bring out. Ocrevus, albeit the newest drug on the block, has shown some great results in helping with the disability factor. We certainly hope that this trend continues. Thank you for the comment and the great insight.
Ed Tobias
Thanks for your comment, Harry. EDSS improvement is very important and I need to point out that Lemtrada patients also show improvement on that scale. Here's a short report that was published on this web site a few months ago: http://multiplesclerosisnewstoday.com/2016/12/02/lemtrada-treats-disability-in-ms-patients-who-respond-poorly-to-other-therapies-study-says. An internet search will provide others.
Additionally, many Lemtrada patients are providing first-person reports of significant improvements in their mobility. Obliviously, these have not been verified in clinical tests but their stories can't be ignored.
I'm five months into my Lemtrada treatment and I'll be very interested to see what my EDSS looks like when I get my six month check next month.
Let's hope that Lemtrada and Ocrevus are just the start of a group DMDs that actually turn around the affects of this disease.
Ed