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Your Treatment: Disease-Modifying Therapies

Science says “Start early.” Research has shown that the earlier you begin treatment the better (For example, see news article). Maybe you’re feeling really good right now and you’re thinking that starting on a medication seems unnecessary.  Think again.  Not starting treatment is a gamble. The disease can be active before you sense any significant changes in your symptoms. The TurnFirst Board joins the Medical Board of the National MS Society in advocating that disease-modifying drugs are most effective when started early, before the disease has the opportunity to cause significant damage.  The bottom line is that if we can slow the disease down enough, it may buy us time to find a cure—or something close to it—and most likely reduce the long-term damage and disability the disease can cause.

An Overview of the Primary MS Disease-Modifying drugs
 

Brand Name

Action

Chemical Name

Indication

Frequency of Use

Aubagio©

Regulates the immune system (“immunodulating”)

Teriflunomide

Relapsing forms of MS

Oral medication, Capsule taken 1x per day

Avonex©

Immunodulating

Interferon beta-1a

Relapsing forms of MS

Once a week, injection in muscle; can be done at home

Betaseron©

Immunodulating

Interferon beta-1a

Relapsing forms of MS and secondary-progressive

Every other day, injection under skin; can be done at home

Copaxone©

Immunodulating

Glatiramer acetate

Relapsing-remitting

Every day, injection under skin; can be done at home

Extavia©

Immunodulating

Interferon beta-1a

Relapsing-remitting

Every other day, injection under skin; can be done at home

Gilenya©

Immunodulating

Fingolimod

Relapsing-remitting (Not tested on people under 18yr)

Oral medication, Capsule taken 1x per day

Rebif©

Immunodulating

Interferon beta-1a

Relapsing-remitting

Three times a week, injection under skin; can be done at home

Tecfidera ©

Immunodulating

Dimethyl fumarate

Relapsing-remitting

Oral medication, one capsule 2x per day

Tysabri©

Immunodulating

Natalizumab

Relapsing forms of MS

Every four weeks, IV infusion in approved medical/infusion  center

Novantrone©

Suppresses the immune system (“immunosuppressant”)

 

Worsening relapsing-remitting, progressive-relapsing, secondary-progressive MS

Frequency determined by doctor with limited number of infusions allowed over two - three years.

Avoid the common excuses to delay. Starting treatment is a huge step in accepting that you have MS.  So it can be an equally high hurdle.  If your early symptoms have been mild or they have resolved after an exacerbation, it is easy to tell yourself that everything is fine.  Remission can lull us to believe that the disease is gone.  Unfortuately, for reasons science doesn’t really understand, the disease can be working in the background while you exhibit no symptoms and then suddenly manifest itself.  MRI’s of the brain don’t always correlate with actual disability.  So, you can have an MRI that shows active lesions and be fairly symptom free.  However, if the MRI is showing that the disease is active, it is damaging your central nervous symptom—whether you feel it or not.  When we’re feeling good, we come up with a lot of reasons to avoid starting a treatment protocol, such as:

  • Getting shots will make me feel like I’m sick.”  There is no doubt that taking medicine on a regular basis—particular when it is via shots—can make us acutely aware that we are fighting a real disease.  When MS is in its early stages or in remission, it can be easy to ignore.  We feel good and we don’t want the bother of taking medication.  A shift in thinking can help this mind set.  Try looking at treatment as an insurance policy, as something good you can do for yourself to stay healthy.  There is also the concern that the medication itself will make you feel poorly.  In some cases, that can be true, but there are enough options that you are sure to find one that has little or no side-effects and gives you the positive benefits of slowing the disease.
     
  • “It’s too expensive.” Most major health insurance companies cover these medications and can send you multi-month supplies via their main-order pharmacies.  Contact your benefits administrator or a nurse practitioner at your doctor’s office, if you need help coordinating your benefits or covering the costs of co-payments.  The National MS Society has useful resources to help patients who need assistance with affordable medication.  Also, the Cost Containment Research Center can give you information on patient-assistance programs offered by the drug companies.
     
  • “I’m afraid of needles.” or “I can’t give myself a shot.”  This is challenge you can overcome.  The drug companies took a page from their experience with diabetics and now offer “injector pens” and training to patients who need to give themselves subcutaneous shots (i.e. shots into the fatty tissue just below the skin versus intramuscular shots that go into the muscle.)  The injector pens are great little devices that you load with the shot, hold up to your injection site, and push a button.  The pen does the work and you don’t even have to look at it.  Also, the needles are very thin, so the pain in minimal.  Unless you have a true phobia, which may deserve special care to overcome, this excuse is surmountable.
     
  • “I don’t like taking medicine if I don’t have to.” If you had a heart condition and your cardiologist told you that you had to go on medication to make sure you didn’t have a heart attack or a stroke, you’d probably do it.  Consider this the same way.  Look at the science again.  How do you want to play the odds?  This decision may profoundly affect the quality of your life.
     
  • "I feel fine. MS doesn't bother me and the exam looks good. I don't want to take the medication." You may feel great, especially early after your diagnosis. Unfortunately, that MS is still having an effect on your body, even if you can't always feel it. That is why you want to follow your neurologist's advice and take the medications to help combat the effects that you can't even detect so that you can stay healthier longer.
     
  • “I feel worse because of side effects of meds than MS makes me feel.” You and your doctor have to work hard to treat the side effects so that your quality of life is not compromised. MS is a silent disease and you need to keep healthy and stay ahead. It is possible to manage side effects through dosage amount, timing of dosage (evening is sometimes better so you can sleep off the side effects), and Ibuprofen.

Understand the risks.  The current disease-modifying drugs have all been tested for safety and are approved for use by the FDA.  They each have their own list of notations about possible side-effects and risks.  That is common for all medications these days, including Tylenol.  By and large these drugs are well tolerated by most people, although some may have flu-like side effects.  However, two drugs carry more serious warnings. (1) In clinical trials, three patients receiving Tysabri (natalizumab) contracted a rare brain disease called PML (progressive multifocal leukoencephalopathy) and two died.  The drug was removed from the market for a year and, following an exhaustive medical review, reintroduced to the market in the fall of 2006 under a strict new protocol that restricts the use of other medications in conjunction with its use and requires careful monitoring of patients for signs of PML.   (2) Novantrone (mitoxantrone) is a chemotherapy also used to treat cancer.  The common purpose for both conditions is to suppress or disable the immune system.  Novantrone can only be administered a limited number of times and patients have a “lifetime dose” they cannot exceed because it is known to be toxic to the heart over that dose.

How to S.E.A.R.C.H.™ for the Right MS Therapy for You! February 24, 2012 (created by the Multiple Sclerosis Association of America)

Before embarking on any treatment program, talk to your doctor.  This information is for educational purposes only.

TurnFirst is an independent, privately run non-profit that has no ties to or sponsorship from the pharmaceutical companies.  Any reference to or support of drug-related treatments are done so solely for the purposes of patient education and are based on clinical evidence monitored and certified by the FDA.