HealthCare Journey for Multiple Sclerosis
  • Home
  • About Us
  • Virtual MS Center
    • Q & A for Virtual MS Center
    • Read About Our Virtual MS Center Staff
  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
    • Diagnosis
    • Treatment
    • MS Tips
  • Symptoms
    • Balance and Walking Issues
    • Breathing/Respiratory
    • Bowel Dysfunction
    • Cognitive Dysfunction
    • Crying/Laughing Uncontrollably (PBA)
    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
    • Fatigue
    • Foot Drop
    • Hearing or Smell or Taste Changes
    • Heat Sensitivity
    • Leg Weakness
    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
    • Pain
    • Sexual Dysfunction
    • Sleep Issues
    • Spasticity/Spasms/Cramps
    • Speech/Swallowing
    • Urination/Bowel Problems
    • Vision
  • MS Clinics
  • MS Topics
    • Pregnancy and Infertility
    • Caregivers and Family Members
    • Employment and MS
    • Medical Costs and Insurance
    • Pediatric Multiple Sclerosis
  • Register With Us
  • Terms of Use/Privacy/HIPAA
  • MS HealthCare Journey

Welcome to the Virtual MS Center!

Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
CLICK HERE TO ASK YOUR QUESTION!

Questions about disease modifying therapies for MS

6/26/2016

 
Here is My Question:
How frequently are patients diagnosed with MS or suspected of having MS but not started on disease modifying therapy (DMT) and what are the criteria for starting DMTs in the absence of certain diagnosis? What makes a neurologist prescribe DMTs? What makes a neurologist not prescribe DMTs but suspect MS over several years?

Answer:
Here are my thoughts to your questions:
​

1.  How frequently are patients diagnosed with MS or suspected of having MS but not started on DMTs and what are the criteria for starting DMTs in the absence of certain diagnosis?  Answer:  first off, patients should have a diagnosis of MS or CIS (clinically isolated syndrome) before discussing the appropriate use of DMTs (disease modifying therapies).  Part of the criteria of diagnosing MS is to rule out alternative explanations for the patient’s presentation.  If that has been reasonably done, the DMT discussion is appropriate.  My practice has been to offer a DMT for any patient with confirmed multiple sclerosis (per the 2010 McDonald Criteria) that has reasonable evidence that they are in the “inflammatory phase” of their MS (since this phase is where the DMTs exert their effect).  Evidence for the inflammatory phase includes hx of semi-recent relapse (of concern for this), and MRI evidence of contrast enhancing lesions or interval development of T2 hyper intensities (these are the white spots on the brain scan).  When confirmed MS is present, in my opinion, it is best to treat as we do not have a reparative therapy at present, only therapies that mitigate future inflammation.  Cases where I may hold off on DMTs but simply monitor carefully are the CIS cases where they have very little to no MRI lesions.  For instance, follow-up reports from the optic neuritis treatment trial demonstrated that the more brain lesion that are present on the initial scan, the higher the risk for development of MS.  Conversely, having very low lesion burden on the initial MRI suggests a ~25% chance of developing MS over the next 10 to 15 years.  Those patients, in my opinion, may be best served by monitoring them clinically and with MRI and starting DMT only if they prove to have evidence of persistent inflammatory activity.  The “uncertain diagnosis” that you refer to would include the CIS cases and patients who I strongly suspect they have MS and an exhaustive evaluation of mimicker diagnoses are negative.

2.  What makes a neurologist prescribe DMTs?  Answer:  I suspect you may get slightly different answers to this question, however, I err on the side of treatment for the reasons I detailed above.  It is noteworthy to point out that the very first approved DMT, betaseron, has published 21 year data on disability long-term.  We learned that those who start betaseron early (rather than waiting) had significantly less disability (in the case of this report, mortality) compared to those who had a delay in start of approximately 2 years.  Although I don’t have data for my next point, I do have my personal experience following MS patients since 2001 (at a time where we have a few therapies, and at that point, for only a few years).  I suspect that most, if not all, of our DMTs would show similar findings as that follow-up betaseron study.  The reason I believe so is my anecdotal experience of seeing a much higher proportion of patients in my clinic in wheelchairs back in 2001 compared to today.  When I see patients today in wheelchairs, they typically are the same patients whose MS started before approved therapies were available.  To underscore my point, it is important to remember that we do not have reparative therapeutics at this point in time.  We only have therapies that modify the disease course moving forward.  Hopefully that will change in the near future as we are seeing early development of remyelinating agents (but it should be pointed out that remyelinating agents would not be expected to be helpful for patients who have lost brain or spinal cord tissue—i.e., the axon or wire which the myelin protects is gone).  I have come across a few patients who follow the literature and have decided to forgo treatment now and play the odds that a reparative strategy will be available to them soon.  While I hope for that for them, I cannot recommend such a course.  Treating early is best.

3.  What makes a neurologist not prescribe DMTs but suspect MS over several years?  Answer:  this is an area of debate among MS specialists.  We know that the natural history of MS tends to regress to the mean in respect to relapses and new lesions on MRI over time (i.e., the immune system and MS tends to weaken or burn itself out over time).  As I mentioned earlier, our DMTs are effective during the inflammatory stage of the disease.  So, when do we know that the inflammatory phase is done and we wouldn’t expect any meaningful benefit from the DMT?  The answer is, no one really knows.  Unfortunately, we can’t circle a date on the calendar as the day not to worry about another attack or more lesions on the MRI.  There have been investigations on taking DMTs off and see what happens.  One of my mentors, Dr. John Corboy at the University of Colorado, will be heading up a multi center study that would determine what patient characteristics would indicate that they can safely come off their DMTs.  In the past, I have used a very high bar to come to the conclusion that it would likely be safe to come off DMT:  1) no clinical disease activity (i.e. relapses) and 2) no new lesions on MRI scan over a 10 year interval.  The reason I use this is I find it highly unlikely that a patient can achieve that level of disease control over a decade and it be a result of the DMT they are on.  All current DMTs are partially effective.

Hope this helps.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
Zoe
6/27/2016 11:45:54 am

If "all current DMT's are partially effective", and a patient has experienced NEDA for eight years, what else would contribute to no clinical disease activity and no new lesions on MRI scans for almost eight years?

Can you say more about the study with Dr. Corboy. Not finding much when I do a google search looking for the study.

Thanks

Betty Lapide
6/28/2016 10:45:34 am

I assume you're talking about RRMS in your response. I have (supposedly) PPMS, and was told that the DMDs would not help me, so I was never put on any.
Is this correct?

Dr Kinkel
6/29/2016 06:47:12 am

NEDA (No Evidence of Disease Activity) is a practical definition of best treatment response that does not include many components of disease pathogenesis that can be responsible for continued worsening. The components that are missing from most definitions of NEDA include the following:

1. Disease activity with the spinal cord. The spinal cord is notoriously difficult to image and we do not have an accepted way to measure myelination in the spinal cord. Many authors advocate imaging the spinal cord, at least occasionally, but this type of imaging has not be validated to the extent that brain MR imaging has been validated as a surrogate marker of activity in MS

2. Disease activity within the cortex and normal appearing white matter. Standard imaging techniques do not allow us to image cortical demyelination and the techniques available for quantitating myelin in normal appearing white matter are not use in clinical practice

3. Brain volume loss is included in a newer definition of NEDA but there is no practical and reliable way to measure this volume loss yet in clinical practice. A company in San Diego (Cortech) has marketed a technique for measuring brain volumes and this is approved by the FDA but only a few MS centers use it at present. Part of the problem with measuring brain volume loss is that we do not know exactly how to use this information yet (a complicated subject).

4. Lastly, NEDA does not measure brain metabolism or brain function; it only clinical activity and brain structure. For instance, a person can have a large volume of "white spots" on their MRI but well preserved neuronal reserve and functional brain networks while another person could have fewer white spots and experience far more serious problems related to loss of neuronal reserve and functional networks.

Overall, NEDA is a great start but fails to capture many aspects of disease pathogenesis. As in your situation it is very common for patients with progressive disease to satisfy the criteria for NEDA until several years go by and it is clear that their functioning has deteriorated, even though they have not experienced a relapse or new white spots or enhancing lesions on MRI. This is because the sustained progression component of NEDA usually takes several years to detect in clinical practice.

Hope this helps

PS My old friend Betty is correct. DMDs are no beneficial in most cases of what we used to call primary progressive MS


Comments are closed.

    RSS Feed

    PLEASE NOTE: This information/opinions on this site should be used as an information source only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
    Read About Our Virtual MS Center Authors

    Archives

    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    July 2013
    June 2013

    Categories

    All
    Accessible Housing And Environmental Modifications
    Anxiety
    Balance
    Bowel Problems
    Caregivers
    Cognitive Function
    Compliance
    David Rintell Ed. D.
    Deborah Backus Blogs
    Depression
    Diagnosis
    Diet
    Dizziness
    Dosing
    Dr. Greenberg's Q&A
    Dr. Kinkel's Q&A
    Dr. Miravalle's Q&A
    Dr. Nielsen's Q&A
    Dr. Osborne's Q&A
    Exercise
    Experimental Treatments
    Eye Surgery
    Fatigue
    Fatique
    Flu Shot
    Foot Drop
    Herbs
    Immunosuppression
    JCV
    Lasik Surgery
    Lesions
    Lori Kostich's Q&A
    Lyme Disease
    Medications
    Migraines
    Mobility
    MRI
    MS Hug
    Other Diseases
    Pain
    PML
    PPMS
    Pregnancy
    Relapse
    Safety
    Sarah Wargo's Q&A
    Sexual Dysfunction
    Side Effects
    Smoking
    Spasticity
    Stem Cell Transplantation
    Steroids
    Stress
    Supplements
    Surgery
    Symptoms
    Treatment
    Urination
    Viruses
    Vision
    Vitamin D
    Vitamins
    Weakness


© 2022 HealthCare Journey, LLC. All Rights Reserved.
HealthCare Journey™ is a trademark of HealthCare Journey, LLC
Picture
  • Home
  • About Us
  • Virtual MS Center
    • Q & A for Virtual MS Center
    • Read About Our Virtual MS Center Staff
  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
    • Diagnosis
    • Treatment
    • MS Tips
  • Symptoms
    • Balance and Walking Issues
    • Breathing/Respiratory
    • Bowel Dysfunction
    • Cognitive Dysfunction
    • Crying/Laughing Uncontrollably (PBA)
    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
    • Fatigue
    • Foot Drop
    • Hearing or Smell or Taste Changes
    • Heat Sensitivity
    • Leg Weakness
    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
    • Pain
    • Sexual Dysfunction
    • Sleep Issues
    • Spasticity/Spasms/Cramps
    • Speech/Swallowing
    • Urination/Bowel Problems
    • Vision
  • MS Clinics
  • MS Topics
    • Pregnancy and Infertility
    • Caregivers and Family Members
    • Employment and MS
    • Medical Costs and Insurance
    • Pediatric Multiple Sclerosis
  • Register With Us
  • Terms of Use/Privacy/HIPAA
  • MS HealthCare Journey