Neuropathy update

It has occurred to me that it has been a long time since I’ve talked about my chemotherapy induced peripheral neuropathy. At about this time last year I saw a pain doctor. Just in passing he mentioned the option of a 24-hour time released gabapentin (known as Horizant). It often isn’t mentioned because it isn’t on most insurance formularies (meaning it costs patients more). One big reason to chose it is that it reduces pill fatigue. One point that insurance companies and doctors seem to miss that is that it works a lot better. It is unfortunate that the efficacy of a medication isn’t taken into account because of insurance companies, and it really annoys me that insurance companies don’t take into account the efficacy of the medication. It is one of the things that angers me the most about this healthcare system.

One of the biggest advantages to a time-released version of the medication is that it is always in your system. With the other gabapentin, I’d need to take 4-pills every 6-hours for it to be equivalent. That means waking up in the middle of the night. On gabapentin, my neuropathy was always worse first thing in the morning. That was, in part, because after 8-hours of sleep I no longer had gabapentin in my system. Gabapentin also makes some people drowsy. So taking it 4-times per day can be really disruptive. The horizant makes me drowsy, so I take it at dinner and it helps me sleep at night (a double win because hormone therapy mucks with sleep patterns).

For me, Horizant has been a miracle drug. I’m willing and able to pay the extra for it (it isn’t cheap). It means that when I wake up first thing in the morning, my feet don’t hurt. It also means that my feet don’t hurt when I get up after sitting. It used to be that the first 10 steps were filled with burning pain in my feet.

I’m noticing that my neuropathy is improving. I still go through phases where things burn, but then they are much less intense. I notice that I have much more feeling in my lower legs and feet. This makes getting IVs in the legs a lot more painful, but that is a worthwhile trade-off for improved neuropathy. It used to be that I would lose feeling in my feet after 20 minutes of hiking. Now I don’t even notice my neuropathy until around the 90-minute mark. And even then, what I’m noticing is not nearly as bad as it used to be. So, I’m happy to report that my neuropathy is improving.

In January, I’ll talk to the pain doctors again. Anytime I mention going off of the Horizant, it is suggested that I stay on it. It is also used for other medical conditions that I have, like back pain from arthritis, reducing the side-effects of hormone therapy (e.g. making hot flashes less severe, treating restless leg syndrome), and treating post-surgery fantom pains. My healthcare team feels it is doing more for me than just treating my neuropathy.

And so, as this year is coming to a close, I’m happy to report that my neuropathy is doing much better. I’m finally starting to feel like I’m getting at least some of my health back. I’m hiking further than I ever used to – with a 10km (6-mile) hike not being out of the ordinary.

  • Becky

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