Multiple Sclerosis Disease Modifying Therapies (DMTs)

Disease modifying multiple sclerosis (MS) treatments (DMT’s) often referred to as disease modifying drugs (DMD’s) are medications which attempt alter the progression of the disease.  It is important to note that these medications are not cure’s yet may for some patients stop disease progression.

History:

In 1993 the first treatment for MS called Interferon Beta-1a came into usage for patients living with a course of the disease known as relapsing-remitting multiple sclerosis.  The medication is delivered by hypodermic injection and is still used today.

Disease Modifying Therapies or DMT’s are not cure’s for MS they instead are considered medications that modify the natural course and / or progression of the disease.  These medicatons work in differing ways and all may present side effects.  Some side effects can be quite troublesome, even life threatening but most are tolerable and many side effects can be managed through varieties of other means and / or medications.

Existing DMT’s now come in a variety of delivery mechanisms from InfusionsHypodermic Injection and more recently even Pill medication forms.

Efficacy (effectiveness) of the various therapies available can vary substantially from individual to individual as does MS itself.  Furthermore these therapies revolve mostly around RRMS or Relapsing Remitting Multiple Sclerosis which is the most prominent type of MS (to see types of MS, Click Here).

The goals of DMT’s are to prevent MS exacerbation’s (attacks) from occurring thus modifying the course and progression of the disease.  The fewer exacerbation’s that occur the less nerve damage and impact upon the patient’s life course.  Makes sense.

However, even though many therapies now exist and have shown in clinical trials effectiveness in helping stave off “MS Attacks” many people choose not to engage in a therapy.  Many do so for various reasons from fears of side effects all the way to the other side of the spectrum of “My MS really is not too bad, the attacks have not done me much harm” and countless reasoning in-between.

I’d read at several websites its estimated that up to 50% of people with MS are not on any form of DMT.

Overview

MS Disability Scale Chart
MS Disability Scale Chart

Most patients with MS need seriously consider a disease-modifying therapy.  We now have several types of medications designed to slow the natural course of MS.  The therapies have all shown benefits to MS patients in well-designed large studies. Based on the results, the National Multiple Sclerosis Society states: “Initiation of therapy is advised as soon as possible following a definite diagnosis of MS and determination of a relapsing course.

Some facts:

  • MS disease modifying therapies are the only medications proven to slow the disease.
  • After 20 years, 15-20% of untreated patients are in wheelchairs and another 50% need aids to walk.
  • Some patients believe they do not have enough attacks to warrant use of DMT’s.
  • We now know that one of the effects of MS can be in thinking or memory loss. This can be a serious symptom and decreasing this loss should be a high priority.
  • Some patients wait to see if they will become more disabled before using DMT’s. However, these drugs do not reverse damage; they decrease future damage.
  • There is some evidence that patients using DMT’s early in the disease leads to a better response than those treated later in the disease.
  • There are studies indicating benefit in patients using these drugs after their first attack, before the diagnosis of MS can technically be made (the diagnosis of MS requires at least two attacks).
  • This first attack is called Clinically Isolated Syndrome (CIS), and several of the medications are FDA approved for use in CIS.
  • On average, DMTs decrease disease activity by about 1/3.  Each patient must balance the 1/3 slowing of the disease with the inconvenience of using these treatments.
  • Though the majority of patients develop some impairment with time, about 15% have very little or no disability even after 20 years. Some patients do not use these medications, hoping they will be one of the fortunate ones. However, there is no way to predict which patients will remain without disability.
  • The medications are expensive. They are generally covered by  insurance, but some insurance plans have high medication co-payments.
  • Medications approved for long-term treatment of MS include self-injected therapies, infused therapies, and oral medications.
  • There are side effects associated with all of the MS disease modifying therapies. It is important to discuss the side effects with your health care provider when choosing the appropriate medication for you

Should I Be Using Disease Modifying Therapy?

WomenTakingPillMS is so unpredictable that its a difficult decision.  Some people with MS for years on end do not have the debilitation others have had in scant years.  However those fortunate people are the minority, not the majority.

Basing one owns MS upon others debilitation or lack thereof is not a truly informed way of looking at this disease.  Today all seems fine, attacks have impaired one’s vision let’s say for sake of discussion and in three week’s time the Optic Neuritis caused by the exacerbation subsides and I feel just dandy.  Thats not to say that next time however an exacerbation happens that my walking ends up being impaired and I do not fully recover from that.  Another happens 8 months down the line and now my ability to ambulate is even more difficult or completely compromised.

In some ways given the fact that these therapies exist and have shown efficacy amongst a wide spectrum of those afflicted with MS its like playing Russian Roulette not being on one because we cannot know when an MS attack may happen.

We do not know what part of or brain or spinal cord might be impacted and how much damage is done more or less how much functional loss we may or may not endure.  But there is more than that.  Some researchers say for every one exacerbation that we know has impacted us there may be many others happening that we are unaware of because we do not directly feel or see the results of them.

Further, we as human beings tend to just shrug off or not even perceive what appears minor to us.  For example, an exacerbation might be “silent” we dont see or feel a direct result of it, yet our cognitive function is impacted.  Thus, one is sorta preventing the other from being readily noticed.  That happened to me.  Everything was fine, did not notice or feel a thing.  Then one day I was in some training and I could not even organize some papers proper.  I did not know what was going on.  The instant anxiety was overwhelming.  WHAT is going ON!

The USA Veterans Affairs Administration as of November 2014 states:

Some patients believe they do not have enough attacks to warrant use of DMT’s. However, patients are not aware of most MS attacks. A very conservative estimate is that patients have ten silent attacks for every attack they are aware of. These “silent” attacks can eventually affect memory, cognition, and other important areas.

These rather at times unnoticed resultant damages are perhaps the most frustrating part of the disease.  I know when my legs feel weak, I know feeling fatigued, tired, have vision issues.  But its quite different when cognitive function slips.  It may actually be more noticeable to those around us than we ourselves.  If they inform us we might simply deny it as we do not notice it as profoundly or perhaps at all as they perceive it.

It appears at times to be almost cumulative in some people.  More attacks, less cognition. The less cognition, the less noticeable the loss of the cognition is to the afflicted individual.  We also adjust and sometimes we do not even notice that.  Its happened to me many times.  Before MS, I was able to thoughtlessly multitask.  That is to say, going about this and that and that and this without a second thought about it.  Then, it became pausing.  Do this, then that and this.  Currently multi-tasking in anything but the simplest of forms is a problem for me.  I have to deal with life on a more focused individual functional and task based paradigm.  I write things down to help me stay on tasks of the day.  From one area of the spectrum all the way to the other in less than 10 years.

So given what MAY happen and where you are at with your MS considering a DMT is serious.  Discuss it thoroughly with your health care team and family.  Discuss it in our forums with others afflicted with Multiple Sclerosis as that may help you.  Nobody understands living with MS except those of us actually living with MS, how could they?  Reading about it, knowing people afflicted may yield considerable understanding but living with it is a reality.

What If It Really Bothers Me, This DMT Stuff?

After considering the factors and options if you choose not to actively start in a Disease Modifying Therapy and you are of course diagnosed with MS but are simply choosing to wait to see how your MS progresses you should become a “Serial MRI” person.  That is to say, frequent MRI’s as those scans ay provide the evidence of progression of the disease and your increased risks.

I also NOW recommend that anyone diagnosed with MS immediately get two spiral ring notebooks for journals.  I wished I did early on.  Really… Even when I was first diagnosed if it were suggested to me to write things in a journal I’d said, “No.  I dont need any reminders,  besides, who’s going to remember documenting things?”.

Know what?

HAD I documented what was going on with me and HAD I saw those reminders of my MS I’d have been on a DMT sooner than I was.  Unbelievable.  “Who’s going to remember to document things?”  and now I need use pad and paper to remember my tasks for the day.

Does that mean a DMT would have made a difference for me had I begun earlier?  I do not know.  What I do know is that not having engaged in a DMT here as where I am and not documenting my MS most certainly had me more ignorant of its ongoing impacts upon me.

What is certainly clear is that in most people afflicted with MS the disease will progress.

I’d buy new shoes because, “These make me really feel more stable” while not thinking, “Why am I noticing that they make me feel more stable?”

Its those little things we dont even pay attention to.  If I’d written in a journal, “Bought shoes that make me feel more stable” along with the 485 entries saying, “Legs feel a little weak today”,  “Balance feels off today and this past week”,  “Fell twice today not sure if I tripped.”  …  Then maybe just maybe I’d have went, “I need be on a DMT yesterday”.

Why two journals?

One is for our physical notations.  Every day get in the habit of just jotting down physical feeling.  Stop.  Sit down.  Grab pen. Think.  “Anything today physical that gave me a moment of pause?”

The other cognitive, emotions, depression any of that stuff.  Marked changes you felt today and what you think the reasons may have been.

You take those journals with you when you go to the Neurologist or if you see a mental hygiene therapist etc. and have those journals available to them for review.  They may well see progression you do not see.

Not EVERYTHING is MS.  We all as human being undergo depression, anxiety, a stiff neck, headache and all those things.  But if you are diagnosed with MS its possible that such things are exacerbation’s happening.  So, we need be extra conscience of that.  Not hypochondriacs, but we need be aware and react.  We need get to the Neurologist with our journals so if something is happening, the faster we respond to it, the better we are for it.