Why fix what’s not broken in my treatments for MG?
TV ads for new medicines have everyone abuzz, but I'm happy with what I have
Rystiggo (rozanolixizumab-noli). Vyvgart (efgartigimod alfa). Soliris (eculizumab). Ultomiris (ravulizumab-cwvz).
The one thing these four names have in common is that they’re all relatively new medications to treat myasthenia gravis (MG). The other thing they have in common is that not one of them plays a part in my treatment plan.
Thanks to research and advocacy efforts by many in the MG community, a number of my friends are seeing commercials for several of these medications. Before they knew me, they’d never met anyone with MG, and now they’re seeing and hearing about it on TV. To them, these medicines are wonder drugs that would get me back to my old self. (I’m using broad generalizations and oversimplification here.)
As a result, they ask me if I’ve considered trying some of these treatments. They’re often confused when I tell them no and that I have no intention of changing my treatment plan.
What they don’t understand is that I’ve experimented and fought for nearly a decade to have my current plan. And it’s working. So why would I want to chase the shiny objects in the world of myasthenia gravis treatment when what I’m doing now is effective?
The limits of treatment — and the benefits
I think many folks in similar situations face the same battle. Many of the friends I’ve made in the online MG community are like me. We desire and yearn for the life that we had before myasthenia gravis took over. But sometimes that desire overshadows our current reality — that our lives may never be the same again.
Sure, there’s always the hopeful dream that we’ll be one of the lucky ones who go into remission or whose symptoms are completely managed by treatment. The personal anecdotes in online support groups and research studies, however, seem to say otherwise.
One thing I’ve worked hard to do over the past 10 years is accept that who I am now is different from who I was then. And that’s OK.
I have seronegative myasthenia gravis. This diagnosis comes with its own set of challenges, one of which is finding a care team that’ll explore treatment options to give me my best life. Over the past 16 months, I’ve found such a team here in Wisconsin.
Today, my care team and I have established a treatment plan that’s working better than anything I’d experienced before. Those four medications above show great promise in treating generalized myasthenia gravis, but they’re unproven for someone like me, with seronegative MG.
Maybe someday down the road, if my current treatment plan stops working as effectively as it is now, I’ll explore additional options with my team. And maybe something akin to flare fear is keeping me from investigating them now. But I see myself as playing the cards I’ve been dealt, with the long game in mind. If my current treatment plan stops working, I’ll need to have options available.
For now, I’m going to stick with what’s working. Why fix what’s not broken?
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Fred Besthorn
I heartily agree, Shawna. I have had MG for 20 years. For 18 of those 20 my symptoms have been mostly under control and manageable with standard, more traditional MG medications. That changed two years ago after I got the second COVID booster vaccination. It has been an uphill struggle since then. But, what I am discovering as you suggested is that chasing the next, new "shiny pharmacological agent" may not always bring the miraculous results presaged in the glossy TV and online ads.
Carol Lawson
Most, if not all of us, are more on top of what is in the pipeline and being tried for our disease — I too have sero-negative MG (being thus labeled is a unique burden in and of itself when coping with ignorant health care professionals) — and the implication by those, however well meaning, is that there is: 1) a cure; 2) and that the patient is ignorant in that they do not watch the same television ads. I received literature in the mail, from one of the recently approved drugs (N=63 thereabout, a frighteningly small cohort upon which to base the performance of any drug) and brought it to my neurologist and discussed it with her. My current treatment is working, and have recently come across postings that the aforementioned “drug” is used IN COMBINATION with other treatments, not a magic bullet. I agree, if it isn’t broken, don’t fix it — because so far, these newer drugs are far from a magic bullet or cure that out friends and loved ones imagine we are ignoring.
Cheryl Carlson
I have no treatment, only mestinon "for comfort", this last neuro says he only practices evidence based medicine. My lack of antibodies, neg SFEMG outweigh the strong response I have to mestinon in dealing with fatigue, weakness, difficulty swallowing,impaired breathing, blurred vision. I will not be allowed any treatment beyond this. When he gave me this speech I was literally suicidal for 4 months. Mestinon helps but I still can't play the flute,bike, stand and speak publicly, hike,ski, drive more than 50 mi as did in 2015. I am 66 being told this is just it,should accept only having 58 active, productive years. Add your own expletives.