Here is My Question:
I am experiencing what seems to be SPMS, and having a huge hard time starting on Ocrevus since it was NOT approved for secondary progressive but rather for pimary!
Any advice from you would be greatly appreciated. I have had MS for about 25 years and have as of 4 or 5 years ago been experiencing a lot of fatigue and increased balance issues.
Let me try to help you frame your question in a way that will help you and your doctors. The information provided in your question suggests that you are at least 45 years old, and possibly over 60, with symptoms related to MS for at least 25 years. Whether you have secondary progressive MS is really in the eye of the beholder. As neurologists we define progressive MS as a measurable and consistent decline in your performance for a period in excess of 6 months not caused by relapses, although having SPMS does not mean you can not also experience relapses. An example would be a patient with mild right leg weakness and a limp on visit 1 followed by gradual onset of more severe weakness in the right leg and mild weakness in the right arm observed 12 months later associated with the need for a cane to walk followed by worsening weakness on the right side and greater difficulty walking 24 months after the first visit. This is not to say that people with SPMS experience a continuous decline in function; Don Goodkin published a study in the 1980s showing that many people with SPMS remain stable over intervals as long as 2 years suggesting that the apparent or perceived progression of the illness is discontinuous in nature.
There are other people with longstanding MS who initially experience a relapsing remitting course but eventually stop having verifiable relapses (or they become very rare) and also do not experience measurable worsening of function over intervals in excess of 2-3 years. Yet these same people accumulate a number of problems over time as a result of prior disease activity. These problems tend to involve symptoms such as pain, mood disturbances, sleep disruption, fatigue, dizziness and impaired balance. These problems, in turn are often worsened by unnecessary medications, co-existent medical problems (e.g. diabetes), decreased activity levels and social isolation. To make matters worse your body and your nervous system continues to age but you have less resilience to the effects of age because of prior damage from the effects of multiple sclerosis.
Regardless of whether you have SPMS as defined in the first paragraph or your condition is more appropriately characterized by my description in the second paragraph, the first step in management is to define your current problems and all contributing factors and work to address these issues, specifically. Disease modifying therapies will not be the solution; while some, such as the recently approved siponimod (Mayzent), may help prevent further progression in the correct circumstances, none of them will help with your fatigue and balance issues. So what do you do?
First, you identify all the potential causes of your fatigue including underlying medical problems (e.g. hypothyroidism), mood disturbances (anxiety and depression), sleep disruption and especially medications. It is particularly common for people with longstanding MS to find themselves on a long list of medications that will worsen fatigue; in these cases we often find that gradually stopping all these medications under a doctors supervision is remarkably beneficial.
Balance issues are also commonly worsened by medicationsm, but usually require intensive neurorehabilitation to resolve (e.g. physical and occupational therapy) .
Start with this approach and avoid the trap of looking for a solution with a new disease modifying therapy. Once you’ve had some success managing the fatigue and balance problems, then you can begin discussing whether it is even appropriate to consider disease modifying therapy at your stage of the disease
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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