Over my many years with MS, I’ve seen medications come and go — and still no cure. But the biggest problem with MS medications, besides their onerous side effects, is who is profiting the most from them: Is it the pharmaceutical companies, or those of us with MS? This has been my internal battle with the MS world producing one medication after another at exorbitant costs.
My Past Experiences With Medications Were Not So Good
I speak from experience, having spent 10 years fighting numerous insurance battles in the 1990s in an effort to avail myself of the first injectable disease-modifying therapy. My hopes were high, only to be dashed when I experienced a hypertensive event that landed me in the emergency room. And that was in addition to the stress of acquiring the medication and then having to inject myself. So of course my view is jaded as I now deal with the progressive stages of MS and having to start the medication search again. This time my intention is to lessen the blow of MS by finding something that will work for me. I expect that I may have to go through a process of trial and error try to find the right drug. But to streamline the process, I needed to find a strategy that would involve research and talking to others who have been through what I’m going through.
How I Did My MS Medication Research
The first thing I did was explore the landscape of new medications available for secondary-progressive MS. It turns out there are only a few medications specifically for SPMS, which is because research for progressive MS is not as robust as it has been for relapsing-remitting MS (RRMS). My task was also harder than expected because some medications are meant for both RRMS and SPMS. The second thing I looked for was an oral pill. I just wasn’t interested in injections or infusions. A popular example of a twice-a-year infusion for all types of MS is Ocrevus (ocrelizumab). This medication has a very high success rate. But I am adamant that I do not want an infusion. Nor do I want an aggressive medication with a litany of side effects, including the potential to raise my risk of progressive multifocal leukoencephalopathy, or PML. PML is a demyelinating disease that can lead to inflammation of the brain and can ultimately be fatal. The third point I insisted on was to see if any of my MS friends, particularly those with SPMS, had any sensible options for medication that they have used. This required sending emails and going onto social media. My own general neurologist did not seem comfortable suggesting anything for SPMS, probably because he was waiting for my recent MRI results, and he does not consider himself an MS specialist. But for goodness sake, I don’t need a specialist, just some rational advice.
How My Research Clarified What I Was Looking For
I looked into the new medications for SPMS, but I was turned off by the side effects listed for those drugs. Living with a miserable condition does not mean I have to be miserable. The more I looked, the more clarity I felt about my goals: I just want something to slow my progression a bit. I was not looking for an aggressive treatment. Just a pill with modest side effects and an acceptable level of efficacy would suit me fine. After all, I am new to medication since I stopped the first injectable disease-modifying medication in 2005. In seeking the advice of others with SPMS, specifically those who liked the therapy they were on, I found a Facebook friend who met all my criteria, which included having SPMS, taking an oral pill, weathering most of its side effects, and being on the same therapy since 2012. And although this was not in my original criteria, my friend showed no progression on an MRI. My older friend’s experience gave me hope that the medication I had ultimately chosen stood a good chance of working for me. As it happens, I will be looking for a new neurologist soon, since my current doctor is retiring. My new provider should be able to see my criteria and understand my wishes. I think a new doctor and new medication is a fortuitous new beginning for me.
