Last week I was in clinic, and I saw a patient who I had met virtually once before. She had been seen by other residents that came before me in our small fiber neuropathy clinic and had been through an extensive workup where she was diagnosed with small fiber neuropathy after a skin biopsy. She had slowly gone through a gamut of medication trials over the years, during which time she found out that she had a lactose allergy (not lactose intolerance, but an allergy to this common medication additive). When I first saw her virtually last December, we talked about her current level of pain in the context of her functionality. She shared that her pain was still prominent despite her current medication regimen, and that some clothing (especially socks) was so painful to put on, she sometimes would forgo outside activities (e.g. grocery shopping) or socializing to prevent pain.
We went through her medication list, which is co-managed by her pain doctor, and consists of Belbuca film, ketamine troches, low dose naltrexone (4.5 mg – the highest dose approved by the VA, where she gets her medicines), and nortriptyline for her pain. When we finished talking through her medicines, she asked me the million dollar question: “Is there anything else that we could try? I know that I can’t take…” where she proceeded to list a few medications that I’d mentioned earlier as options, being informed by her that they contain lactose (which she’d learned from the VA pharmacist).
I thought for a moment, and I told her a couple of things. The first thing was that there are certain neuromodulating treatments that can help with pain which she should ask her pain doctor about. The second I told her was about a medication I’d read about a few months prior. That medication was called VX-548 and renamed Suzetrigine, or Journavyx (brand name). It is a selective sodium channel blocker that was in Phase 3 trials for FDA clearance to treat pain, but not yet FDA approved at the time. I explained to the patient that it is the only medication I’ve read about in the pipeline and close to approval that is a non-opiate, non-habit forming pain medicine which may help her, but only once it’s been approved.
Fast forward to January 30, which was about three weeks before I was scheduled for another appointment with her. I woke up to a New York Times article heralding the FDA approval of Suzetrigine, specifically for the treatment of acute pain (trials had been conducted on post-surgical pain improvement). I was excited, but it also occurred to me – my patient has acute on chronic pain, will this medication be approved for her? And does it contain lactose? And will the VA even have it on formulary in the next three weeks? And will she be able to afford it, how do we know how much VA insurance would cover, if at all? And what about for the benefit of her chronic pain, would this only help as a PRN? Can it safely be scheduled? What about long term data?
After this laundry list of questions went through my head, I couldn’t help but feel exasperated that my hopes for helping this patient attain her goals of being more functional/socializing more felt like they truly were teetering on the success of getting her one single medication, assuming she could even safely take and tolerate it. I felt sad for her that we’ve gotten to this point where intervention opportunities hinge on the speed of research and progress.
It seems like so many other new drugs are coming out all the time for other neurologic conditions, I see ads all the time for new multiple sclerosis medications, or in other fields for conditions like IBD. And yet, it feels like the speed of testing and approval of pain medications has seemed to lag. I suspect this is partly because pain is so heterogeneous, it is hard to study and approve a “one-size-fits-all” medicine that treats small fiber neuropathy as readily as it treats post-operative pain following an abdominal surgery. For example, the same company (Vertex) that initiated testing for VX-548 (Suzetrigine) had other drugs actively undergoing testing, including VX-150 and VX-128. But unfortunately, later phase testing for these medications did not meet their primary endpoints. Having even just one medication that did meet its primary endpoints is exciting, but nevertheless, it really feels like grasping at straws for patients with intractable pain, those who try everything and the kitchen sink but still can barely function.
Ongoing studies are being done for Suzetrigine in treating other types of pain which gives me hope that it may be an option for our patient whether now or later – but for the time being, we told her to talk with her pain doctor about it since they likely have more experience than our clinic does with this brand new medicine. When I see her again, I am eager to know about her experience and what she learns from her pain doctor, but we will keep working on the other aspects of pain management too. Nevertheless, I do know at least part of our conversation will be, “Hey, even though you still have pain – there are still other treatments in the pipeline, we just aren’t there yet.” It gives us both hope, even though the waiting game is at least a bit painful.
What is your experience with prescribing new medications on the market and the promise of recovery for patients? Share in the comments!
Dr. Wottrich is a third year neurology resident in Austin, Texas. Her academic interests include neurological pain syndromes, integrative medicine, immersive daydreaming, and environmental sustainability in health care.
Image by Cube29 / Shutterstock
