OK, let’s say you are experiencing a new or worsened symptom. Who you gonna call? Not Ghostbusters! You’re going to call your MS healthcare provider and let them know what’s going on. So the process should look something like this. Some of the evaluation may occur by phone or at an office visit. Let’s assume that we’ve thought about fluctuations in baseline symptoms and we’ve ruled out any underlying infections. It looks like you are having a true relapse.  Now what?

Research suggests that whether we treat the relapse or not, the ultimate long-term recovery will be the same. Treatment may speed up the recovery, however. In some ways, the decision to treat or not is based upon how much the relapse is affecting quality of life. For example, let’s say you wake up one day with some numbness in your foot. The numbness is annoying but really does not limit you in any way. Based upon the mild nature of the symptoms, you may decide to just watch and not pursue any treatment. On the other hand, if you wake up with decreased vision in an eye or significant trouble walking, you’ll likely want to go ahead with treatment. The recovery from these attacks will likely be the same whether we treat them or not. The speed of recovery will usually be faster with treatment. Even if you are experiencing a mild relapse, make sure to let your healthcare providers know. Relapses need to be documented as their presence may factor into how well we think your long-term therapies are working for you.

What we can do to treat relapses? Well, our first duty is to try to prevent them in the first place. This is the role of the “disease modifying therapies.” Avonex, Betaseron, Extavia, Rebif, Copaxone, Gilenya, Tysabri and Aubagio are used in hopes of seeing fewer relapses, fewer new MRI lesions and slowed progression of disability. In a perfect world, these drugs would stop MS dead in its tracks for everyone who uses them. While many people do see these results, some people will still have relapses in spite of being on therapy.

Let’s look at some treatment options for MS relapses. Remember, the goal of these drugs is to shorten the duration of the attack. Your ultimate recovery may be the same with or without treatment. Intravenous steroids are the primary go-to drug for treating relapses in the U.S. Typically, 3 to 5 days of intravenous Solumedrol (methylprednisolone) is given. This may or may not be followed with a tapering dose of oral steroids. Personally, I prefer to give three days of I.V. Solumedrol 1000 mg daily with no prednisone taper. Our Canadian friends lean more towards oral steroids. High doses of oral prednisone (600 – 1250 mg/day) can be given for 3 to 5 days, again with or without a taper would be one example. Common steroid side effects include mood changes, insomnia, elevated blood pressure, elevated blood sugars, lowered potassium, weight gain and premature cataracts.

Acthar gel (ACTH) is an alternative to the usual steroids. ACTH can be given by intramuscular or subcutaneous injection and results in the increased production of natural steroids. ACTH has also been shown to have other beneficial effects in the immune system unrelated to steroid production. ACTH is typically used in people who have not responded to steroids or cannot use steroids due to side effects. Other alternatives to steroids include intravenous immune globulin (IVIG) and plasma exchange.

In summary, MS relapses can be frustrating and scary. It pays to know what you can do to help recognize them and sort them out from pseudo-relapses and symptom fluctuation. Make sure you are doing everything you can to prevent them by being on an appropriate long-term therapy.  Finally, know what your options are for treating a relapse if you have one.

Relapse. Exacerbation. Attack. Flare-up. These are all terms for the same thing. What is a relapse and what can you do about it if you have one? The strict definition of a relapse is a new or worsened neurological symptom lasting at least 24 hours. There should be no better explanation for the symptoms. Relapses are one of the defining features of relapsing-remitting MS. They become less frequent with secondary-progressive MS and really should not be seen at all in primary-progressive MS. Sounds simple, right? Unfortunately, it’s not always so easy.

The very nature of MS is that even when people are in “remission” they still have symptoms. Things like fatigue, walking problems, bladder issues, pain and cognitive challenges may be present even when you are stable. Many of these baseline symptoms tend to wax and wane. In other words, many people with MS have good days and bad days. Sorting out these fluctuations from true relapses is not always straightforward. Things like stress, heat and sleep deprivation may all temporarily increase some symptoms.

Another challenge is the possibility of a pseudo-relapse. “Pseudo” does not mean that the symptoms are not real. It means that they are being driven by an underlying illness, most commonly an infection. Both urinary tract infections and even common colds will frequently result in an increase in things like weakness, numbness, visual changes, etc. For some people, the first symptom of an infection may be an increase in neurological issues. In addition, a pseudo exacerbation may also be triggered by the response of an MS patient to heat.

Relapses are important for many reasons. The unpredictable nature of MS attacks can lead to worry and anxiety. In my experience the first year after a new MS diagnosis can be the most challenging. The newly diagnosed person may struggle with the meaning of MS for life plans, new medications and the fear of the next attack. Every MS relapse is associated with a chance that there will be a new long-lasting symptom. One study showed that 50% of people experiencing a relapse still had residual new findings on neurological examination 3 months after the attack.

We’ll discuss treatment options in part two on Friday.