What do I Do If My MS is Getting Worse?:

Charles S. Yanofsky, M.D.

If you’re diagnosed to have MS you should be using Betaseron, Avonex, Copaxone or Rebif, as early as possible. These medicines do not cure MS but slow its progress variably. All of them decrease exacerbations. Immune modulators may dramatically improve the MRI scan, the most visible measure of progression, and improve brain atrophy, disability, motor and mental dysfunction. Few people in the know, harbor any doubts that a person with MS is much better off using one of these drugs. The ideal choice is a matter to be discussed between you and your physician.

Immune modulators help but don’t cure MS. The vast majority of patients who use these drugs continue to get worse. They have exacerbations though the number is less than if they hadn’t been using these medicines. Permanent disability motor and cognitive, may progress. At some point you will likely stop having appreciable exacerbations, visible attacks and yet have physical and cognitive declines. Walking nearly always requires greater effort but other functions worsen as well.

Surprisingly, some MS sufferers seem unaware of this slow worsening because it occurs over a long timeframe or perhaps it is something they don’t want to see or make an issue of. This is just one advantage of being followed by a doctor who knows you and follows your progress. We have objective determinants of worsening clinical status. “Black holes”, atrophy and increasing disease burden measures and enhancements can be seen on the MRI scan. Then there are functional measures, such as can be gleaned by careful questions and on the neurological examination, objective measures such as timed walks, graduating to using assistive devices etc. But suppose you’re on a drug and you are getting worse, what are your options?

The only FDA approved treatment for active exacerbations or secondary progressive MS is Novantrone (mitoxantrone). Novantrone is an chemotherapy (anti-neoplastic) drug that has been shown to have a statistical effect where there is a treatment and control group. You’re hard pressed to see functional gains in an individual, though the MRI scan may calm down somewhat. Treated patients may worsen in their disease more slowly than they would without the drug. Novantrone has definite drawbacks. It is an every three month infusion and our practice is to have it administered by an oncologist. There’s a small possibility of it causing a weakening of the heart so that cardiac measures need to be followed, or one’s white blood count may decrease or ability to combat infection can be impaired. It should never be given to a pregnant woman and some physicians shy away from it in women of child-bearing years. But it is an option and we have people on it. It is so hard to sit idly while MS is progressing.

Fortunately we have a large array of other widely used treatments for secondary progressive or actively exacerbating disease. The problem is that none of these is FDA approved, nor have they been shown incontrovertibly, in clinical trials, to have a definite statistical effect. These studies cost millions of dollars to do and thus are mostly funded by pharmaceutical houses when they smell financial gain. For old compounds off patent or already widely used agents, companies have little incentive to study them. Because such measures are unproven doctors and patients are reluctant to try them. Every treatment is a two-edged sword. We know that some medicines can have fearful side effects. Why use a drug that may make you sick when it has no proven benefit? Many doctors (and patients too) seek to stick with what they know. They are the ships hugging the coast for fear of dropping into the abyss. I do not disparage this point of view, but personally I do not agree with it.

In MS your immune system is somehow convinced to take part in destroying CNS myelin. Immune cells, macrophages and t-cells mostly, take part in this attack. The question is why not try to add something that may reasonably be expected to decrease this immune activity, when current treatment seems inadequate, a person is manifestly worse? If you aren’t successful as you want to be, it behooves you to change strategy. You are not obligated to continue doing something that isn’t working for you. I’ll talk about other options in a later report.

Chas Yanofsky