The medical profession must be sick and tired of patients diagnosing themselves via the wonders of the internet. But as a patient who’s sick and tired, you eventually have to. Medicine is full of orthodoxies that are incredibly hard to shake. When you find yourself at the edge of these…

Forced by medication costs to choose between regularly taking their medications or buying groceries, some people with multiple sclerosis are choosing the groceries. Some are skipping doses and others have stopped taking their disease-modifying therapies (DMTs) entirely. This troubling news is…

I am living with an unenviable reality. An antibiotic-resistant, hospital-acquired infection that I developed two decades ago has reappeared. Before my multiple sclerosis diagnosis, I had a spinal cord stimulator implanted for pain control. Although the stimulator was removed shortly afterward, the infection remained. This infection presents itself when…

Almost Half of MS Patients Change or Stop DMT Due to High Financial Burden, Survey Shows I frequently see reports of this on multiple sclerosis patient websites. People with MS say they’ve been forced to change or even stop their treatment because it costs too much. Some people have…

People with multiple sclerosis have been waiting for this: A full-scale clinical trial testing the effectiveness of stem cell transplantation as an MS treatment. The trial is being conducted by the U.S. National Institutes of Health, and it’s enrolling people with MS at several centers in the United States and…

Treatment with interferon-beta therapy during pregnancy in women with multiple sclerosis (MS) does not influence children’s gestational age, birth weight, length, or head size, researchers report. The study with those findings, “The association between exposure to interferon-beta during pregnancy and birth measurements in offspring of women with…

As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision not made any easier if a patient’s neurologist is unwilling to accept much risk.

I rolled onto the neurology ward of the hospital that has been dealing with my disease from the beginning. The nurses, whom I’ve met innumerable times, opened with their normal jolly, “How are you?” I can never resist, “Well, I have got MS!” It was 8 in the morning. I’d…

TD Bank Group has donated $1 million to the Multiple Sclerosis (MS) Society of Canada to support research projects aiming to use artificial intelligence to create tools enabling better use of disease-modifying therapies (DMTs) in multiple sclerosis (MS) patients. MS Society will channel these funds into its Acts of Greatness campaign,…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Are you still driving? Should you be?” from Dec. 27, 2018. At…

If I told you that standing on your head would cure multiple sclerosis (MS), would you do it? I am fairly sure you would find a way to do so. At least once a week, I hear of a miracle cure for MS. Well-meaning individuals tout the latest and greatest…

#ECTRIMS2019 – Are Injectables Inappropriate for Active Relapsing MS Treatment? Injectable disease-modifying therapies (DMTs) have been around for a long time. I took part in a Phase 3 clinical trial for Avonex (interferon beta-1a) in the mid-1990s. These treatments were the only game in town back then, and…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the column,”Tips to Fend Off Invasion of the Common Cold” from Jan. 30, 2017.

In this week’s column, I’ve changed the format a little to focus on one subject: rituximab. This is an approved cancer medication that some U.S. neurologists use as an off-label treatment for multiple sclerosis (MS). Rituximab is similar to Ocrevus (ocrelizumab). When the latter disease-modifying therapy (DMT) became available in…

It probably comes as no surprise to you that the costs of some of the most popular MS medications have been soaring. A new study by researchers at the University of Pittsburgh reports that their list prices have more than quadrupled in a decade. And out-of-pocket costs rose even more.

Choosing which MS medication to use is one of the most difficult decisions for someone with MS and their neurologist. After 39 years with MS, and with four disease-modifying therapies (DMTs) on my medical chart, I’m definitely on the hit-it-fast, hit-it-hard side of that treatment decision. So, I was…

Autoimmune Complications Associated with Lemtrada Solved Using Anti-CD20 Therapies, Case Studies Suggest One of the concerns about the disease-modifying therapy (DMT) Lemtrada (alemtuzumab) is that it may raise the patient’s risk of developing a secondary autoimmune disease within seven years post-treatment. This small study suggests that the abnormal proliferation…

Phase 3 Trial of Ibudilast Planned for SPMS Patients with Inactive Disease, MediciNova Says Though medications are approved in the U.S. to treat primary progressive multiple sclerosis and active secondary progressive MS (SPMS), no disease-modifying treatments are approved to treat the nonactive form of SPMS. This trial aims…

Does your doctor consider what you’ll have to pay when prescribing your medications? A few months ago, I wrote that some people are skipping doses of their meds because they can’t afford their out-of-pocket costs. In that column, one of the suggested solutions was to talk to your doctor…

More than 15 disease-modifying therapies (DMTs) are available in most high-income countries to treat multiple sclerosis (MS). DMTs come in the form of injectables, infusions, and pills. Some are new, others have been around for more than 20 years. Some have a greater possibility of serious side effects than others. Some DMTs are highly effective at slowing or stopping disease progression; others, not so much. It's a difficult choice to make. So, why are some neurologists making it harder? These doctors are handing their patients a medication "shopping list" and telling them to pick one. I see this topic discussed regularly in social media MS groups. Recently, a woman who needs to switch DMTs wrote that her neuro gave her a "handful of (medication) brochures" and told her to go home and decide which medication she wanted. Really? DMT selection shouldn't be do-it-yourself I've been using DMTs for more than 20 years. I've been on Avonex (interferon beta-1a), Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab). I always had the final say on which med I wanted to use, but I never had to make that decision alone without guidance from my neuro. That's the way a doctor-patient relationship should work. While the final DMT decision should always rest with the patient, your neurologist has the responsibility to use his or her knowledge of the meds and of you to guide you in your choice. Some factors that you both need to consider are: Is the disease progressing quickly or slowly? Your lifestyle: Do you work full time? Do you have a good support system and reliable transportation? If an injectable DMT is in the mix, can you handle injecting yourself monthly, three times a week, or every day? How much possible risk are you willing to accept in exchange for the potential of a better result? An additional and criticial consideration is whether you can afford the treatment. My impression is that cost is rarely thought of or talked about before most physicians prescribe a medication. I see nothing wrong with asking your doctor how much you can expect to pay out-of-pocket. (Or, for the doctor's office to ask this of your insurance company). If you feel your neurologist doesn't know all of these things about you I suggest that you be proactive and fill in any blanks. The final choice is yours With all of that knowledge, you can probably narrow down the most appropriate DMT candidates for you to three or four. Then it's time for your neuro to clearly explain why those are the best choices and to review the pros and cons of each. Then, and only then, it's time for you to make the final choice. And your decision might be not to use any medication. That wouldn't be my choice, but it might be yours. After all, you're the one who'll be living with whatever choice you make. What has been your experience? Was your neurologist helpful when selecting a DMT or were you given "a handful of brochures" and told to do-it-yourself? How did you choose? You're invited to visit my personal blog at www.themswire.com.

#AANAM – Biogen Offers Update on Development Plans for MS Therapies The pharma company that brought you Tysabri (natalizumab) is investigating a new process for treating multiple sclerosis. The treatment looks for something called neurofilament light chain (NfL), a potential biomarker that’s released from damaged neurons.

Although the use of highly effective disease-modifying treatments (HETs) in patients with relapsing-remitting multiple sclerosis (RRMS) has increased, they still represent a minority among the treatment strategies used, according to a study. The study, “Trends in the use of Highly Effective Disease Modifying Treatments in Multiple Sclerosis…

A trend of rapidly increasing costs for disease-modifying therapies (DMTs) used to treat multiple sclerosis (MS) appear to be the primary driver behind the overall rise in healthcare costs for people with MS, a study suggests. These data were presented in a…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Could US Gov’t Probe Threaten Pharma Patient Assistance Programs?” from Oct. 12, 2018.

I spend a great deal of time in my head. I think. A lot. Perhaps I do so more than I should, but then again, it is a haven at times. My thoughts run the gamut from the serious to the inane. Today my thoughts…

Progressive multifocal leukoencephalopathy, more commonly referred to as PML, is a brain infection that’s frequently fatal. PML is particularly dangerous to people with MS, which is why I’m interested in a report about a medication that’s showing promise as a PML treatment. The concern for people with MS is…

  It’s tough paying for medications. Whether they’re for multiple sclerosis (MS) or another illness, Americans are having a hard time coming up with the cash needed to cover the cost of their meds. Many people are developing workarounds and compromises to deal with the problem. And in some…

As you might have heard, a disease-modifying therapy (DMT) for patients with active secondary progressive multiple sclerosis (SPMS) was approved a few days ago. That’s great news. A medication targeting SPMS is overdue, but it could be better. The DMT is Mayzent (siponimod), a tablet that’s taken…

About 15 disease-modifying therapies (DMTs) are available to treat MS these days. So, choosing which to use can be daunting. I’ve been treated with four DMTs since I was first prescribed Avonex (interferon beta-1a) back in 1996. Each time I’ve switched treatments, my neurologist has suggested a number of…

Non-contrast MRI Effective in Monitoring Progression of MS, Study Shows There’s been increased interest in the risks versus the benefits of using gadolinium to make lesions more visible on an MRI. The U.S. Food and Drug Administration issued an advisory last year raising the level of…