I am often asked about my MS treatment. But in order to explain how MS is treated (and it isn’t always), I have to explain the horror that is an MS relapse.
What is a relapse, and why is it important?
According to the Multiple Sclerosis Trust, a relapse is a sudden onset of symptoms or disability. And believe me, it can be sudden.
To qualify as a relapse, symptoms must last at least 24 hours (but they often lasts for weeks). To be considered a new relapse (rather than a continuation of a previous one), symptoms must also occur at least 30 days after the start of a previous episode and not be caused by infection (this is why bloods are taken so often for MS patients).
A relapse may also be called an attack, a flare up, an event, an episode or an exacerbation.
It is a complicated and subjective business, but in short new symptoms likely mean a new lesion, old symptoms likely mean a flare up of an existing lesion. Neither is good, as each lesion means living with a particular set of symptoms for the rest of your life.
Once a relapse happens, the aim (in patient terms) is to live through it and recover completely (in other words, not to accrue any disability).
The standard procedure around the world is an industrial level dose of methyl prednisolone over three or four days, often as an outpatient. This cannot be prescribed by a GP; hospital is required. For less severe relapses, oral prednisolone can also be taken.
Methyl prednisolone does not repair the lesion. It simply does what corticosteroids do – reduce inflammation. Reducing inflammation settles the now permanent lesion down and helps stop and/or minimise the symptoms. It is a potent drug and has equally potent side effects in the immediate and long term.
Some patients always want the drugs, others do not. Some neurologists recommend the drugs more often than not, others have a different view. From a patient point of view, I argue that the option of accessing the drugs is a lifeline, at least in the emotional sense. When that is denied, patient well-being suffers.
There is not much the medical establishment can do for a relapse. But regardless of how you approach relapses, there is still the question of treating the disease itself.
Treating (or more correctly managing) MS
I think of my neurologist as my case manager: he tracks my symptoms, monitors my relapses and determines my treatment. And he sends me off to a specialist to deal with the boutique symptoms that MS sometimes presents (see my last post for a ridiculously long list of potential MS symptoms).
For Relapsing-Remitting MS (RRMS, the most common form), there are several disease modifying therapies. I take Gilenya. Each has different side effects, levels of effectiveness and quality of life issues. The important thing to remember is that disease modifying therapies are not a cure. They simply aim to reduce the frequency and intensity of relapses. Reducing relapses reduces the potential for damage – and thus disability – over time.
My point is that…
There are two aspects to MS treatment:
- Addressing MS relapses as they occur (with the aim being to get them over and done with as soon as possible, with as little permanent damage as possible)
- Modifying the disease itself (with the aim being to reduce the frequency and intensity of relapses and/or progression of the disease).
Thanks to Rethink MS Relapses for the image.