A Special Report on Oral Treatments for MS

Health Union recently released results from the 2014 MS in America Survey, which included responses from more than 5,000 multiple sclerosis patients. The survey addressed a variety of topics that impact individuals living with MS, including diagnosis, symptoms, treatment, relationships, career, and quality of life.

A special section of this survey focused on the use of oral MS therapies. Historically, prescription treatment of MS has been dominated by injectable and infusion therapies. With the recent introduction of oral prescription drugs for the most common type of MS called relapsing remitting MS (RRMS), this paradigm is shifting towards orals, with nearly a third of RRMS patients reporting using an oral prescription.

Needle fatigue, tolerability, convenience and efficacy are the most cited reasons for people choosing oral therapies and respondents report being more satisfied with oral therapies than injectables. Of those currently taking an injectable, nearly half have considered switching to an oral, signaling a continued shift away from injectable therapies.

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Overall, patients taking oral MS medications found their medications to be equally effective as injectable treatments. However, 58% of respondents felt that oral medications offered better tolerability.

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More results from the 2014 MS in America survey can be found on MultipleSclerosis.Net, including the special report on oral MS treatments.

The MS in America Study was conducted online in early 2014. The goal of the study was to establish an understanding of the current state of people affected by MS. The survey included a total of 156 questions on a broad range of topics.

A total of 6,202 people started the survey. 5,710 met eligibility requirements, and 5,004 people completed the survey. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad. The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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Newly Diagnosed with Multiple Sclerosis?

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People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

  • Stay open to ideas outside of mainstream information, but don’t believe everything you read online
  • Education is one of the most powerful tools you (and your caregivers) have
  • Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
  • Make sure your doctor is knowledgeable in treating MS
  • Keep all your medical records

Take care of yourself*:

  • It’s important to manage your overall health – physically and mentally
  • Eat plenty of fruits and vegetables (avoid junk food)
  • Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
  • Give yourself time to get the rest you need
  • Don’t stop taking medications just because you start feeling better
  • Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

  • Finding an MS buddy an be an enormous health
  • Work with associations and experts that can help you through the processes
  • Look to religion if it’s helpful for you
  • Keep a network of friends and family that can help you with even the simplest tasks when you need it
  • Keep your stress levels in check:
  • Try to keep stress levels as low as possible – stress can be your worst enemy with MS
  • For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

  • Know your limitations but find ways to continue enjoying life
  • Find something to be happy about every day
  • Remember that having MS is the “new normal” and be kind to yourself as you adjust
  • Take each day at a time
  • Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

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How do you treat your MS?

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease.  Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

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In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

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Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t? 

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by multiple sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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MS & Management of Cognitive Symptoms

Have you struggled with memory loss? Is it challenging to concentrate on certain tasks? You’re certainly not alone.  It’s not unusual for individuals with multiple sclerosis to struggle with a variety of cognitive issues.  Although severe cognitive impairment only affects a small percentage of MS patients, 66% of respondents in the MS in America survey noted experiencing cognitive dysfunction.  Additionally, 49% of participants identified cognitive dysfunction as a symptom they experienced frequently (n=3,135).

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Among individuals experiencing frequent cognitive symptoms, more than 80% struggled with memory loss, concentration/attention span, information processing, and verbal fluency:

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We recently asked our Facebook community to share their techniques for managing frustrating cognitive symptoms.   Here are some of the top tips:

    • Keep lots of lists that you can take with you, either on paper (post-its, etc) or on your phone
    • Use a calendar (paper or electronic) and update it on a regular schedule to keep track of important dates/events
    • Utilize alarms for reminders – even for simple things that you might forget
    • Avoid procrastination since you’re more likely to forget
    • Keep important things in the same place so you’ll always know where to find them
    • Label storage areas (drawers, boxes, bins, folders) so it’s easier to find things
    • Stay mentally active by learning new things, picking up hobbies, meditating, or completing crossword puzzles
    • Visualize the topic you’re talking about, it may help your mind stay focused
    • Use written communication
    • Be honest and ask for help from others, including your doctors

Don’t forget – recent research has suggested that aerobic exercise and cognitive leisure activities can also help improve memory and protect against cognitive decline.

Do you experience cognitive symptoms? How do you manage them?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by Multiple Sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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