Changing multiple sclerosis meds, again

Change can be good.

For months I’d been bothered by leg pain which I’d chalked up as just my multiple sclerosis (MS) doing its thing. Sometimes it was an ache in one hip. Or the other. Or both. Sometimes it was a sharp pain, shooting from my left hip and traveling down into my thigh via what I assumed to be my sciatic nerve. My glutes always ached. Recently, lying in bed at night, I’d had very painful cramps along my left shin, extending down to the top of my foot. I worried that I was headed for hip or spinal surgery. But, one night after my leg cramps forced me to get out of bed twice, to walk and sit to ease the pain, my wife suggested I try taking one of her tizanidine pills.

I’d been taking gabapentin, thinking that most of my pain had been nerve related. Before that I’d used baclofen as a muscle relaxant, but I could never get its balance right. A low dose didn’t seem to be enough, and the next step up left me with rubbery legs.

But after I took the tizanidine I slept the rest of the night. The next day some of my other pains seemed to lessen. I spoke with my neurologist and she agreed that a medication switch might be a good idea. That night I took another 2mg of tizanidine and, again, I slept through the night. During the day my hip pain has decreased significantly, and my legs seem to move apart with less difficulty.

Change doesn’t come easily

I think people with MS, and sometimes their neurologists, are too often reluctant to change medications. I’ve seen this particularly when it comes to disease-modifying therapies (DMTs). They continue to depend on older treatments, such as the original three injectable MS medications (which are now thirty years old) even though there are much newer DMTs that have been proven to be more effective. This may be due to lack of treatment knowledge (on the part of both patients and physicians), fear of side effects, the cost of the medication, or combination of all of these.

A collaborative effort between the patient and a knowledgeable neurologist is really the key to finding the right first treatment or making a change. I’m grateful to have had that association over my many years living with MS, but not everyone is as fortunate.

Help finding the right treatment

A few years ago, neurologists at Barts and The London School of Medicine and Dentistry created what I think was the first on-line selection tool for DMTs. It lists 13 that are available in the U.K.’s National Health System and allows a patient to narrow the choice based upon things such as the importance of preventing relapses or long-term disability, concerns about long-term or minor side effects, and whether the patient is willing to visit a healthcare facility to receive treatments or tests. The tool then ranks the DMTs based on those choices.

A similar tool is available on the website of The MS Society in the UK. Unfortunately, the tool only works if users indicate they live in the U.K., the Isle of Man, or the Channel Islands.

An excellent DMT selection aid is a set of information cards; a project of professor Gavin Giovannoni, chair of neurology at Barts, and medical student Safiya Zaloum. Each card contains comprehensive information about a specific DMT, written in easy-to-understand language. The DMTs are scored on a 1-10 scale based on attributes such as the ability to prevent relapses and progression, possible side effects, and family planning considerations. After reading the cards an MS patient has the information needed to collaborate with a neurologist on a treatment.

I’m still working on a treatment balance

About a month after starting tizanidine my leg cramps began to squeeze once again at night. So, I returned to taking a small dose of baclofen before getting into bed and using the tizanidine only in the morning. For whatever reason, that seems to be a good combination. It’s evidence, though, that there’s no one-stop-shopping for MS medications that work. Even after living with MS for four decades, what works today may not work tomorrow.

(Image by Valeria GB from Pixabay)

(A version of this post first appeared as my column on the Rare Disease Adviser website.)