Yesterday, I was back at the pain clinic for an appointment with the nurse practitioner who does medication management. It was a follow-up visit I'd scheduled months ago, but the timing ended up being just about perfect. For the last month or so, I'd been feeling more than a little bit unraveled: the pain was starting earlier in the day, it was more intense, it was spreading from my legs to the bottoms of my feet. I was struggling to concentrate at work, and I noticed I was avoiding social contacts, I was avoiding physical activity, I was irritable and depressed. I also started to notice that as I was trying to fall asleep, my legs were playing this odd involuntary soccer match, which I was told was a consequence of the large quantities of Neurontin that I've been taking for the last couple years.
So I was happy to hear the nurse practitioner say that there's a brand-spanking-new drug available to treat neuropathic pain called Lyrica (pregabalin), that they've had good luck with it, and that it has fewer side effects than Neurontin. I was not happy, though, to learn that Navitus, the pharmacy benefit manager for my HMO, would not pay for Lyrica unless and until I've tried 1) Neurontin + imipramine, 2) Neurontin + nortryptaline, and 3) Neurontin + amitryptaline.
Now, I understand the valuable function that pharmacy benefit managers serve in the system in ensuring that the HMO's pharmacy dollars are spent wisely. I understand that if the HMO paid every time somebody wanted the latest-and-greatest drug, maybe a drug that was advertised on TV, instead of trying effective, cheaper alternatives first, my premium would be a lot higher than it is.
But.
I wish I could talk to one of the medical directors at Navitus. I wish I could explain that over the last three or four years, I've been through a succession of drugs to deal with the ever-increasing burning pain in my lower extremities, that I started out with imipramine, tried a handful of different anticonvulsants before settling into a Neurontin habit that has me taking a pill every 2 1/2 hours, on the suggestion of my neurologist, shelled out a few hundred bucks to try acupuncture, started meditating and doing yoga, and I still feel like pain has been a significant factor in the way I've lived my social and professional life. I still feel like most difficult part of living with MS for me is not the end of the physical, active life I used to live, not the indignities of bladder problems or sexual dysfunction, or the looming uncertainty of increasing disability in the future; the most difficult part right now is that every day at about 3:30 in the afternoon, my legs start to burn so badly that I want to chop them off.
So I need to wait. Maybe it will turn out that the neurontin + tricyclic combination is effective and doesn't leave me feeling dopey and sluggish. Maybe, but I'm still mad as hell.
technorati tag: multiple sclerosis
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2 comments:
Do you ever get the feeling that the people who make up HMO rules have never been sick or experienced any pain in their entire lives?
I don't know about the neurotonin- but be sure to slowly increase the amt of the tricyclic they give you. My moron of PCP gave me 75 mg all at once and I was loopy, sluggish, giddy, hyperactive then had suicidal thoughts, horrible metallic taste, could barely pee- for about 2 weeks. Start low and gradually increase. After a month most of the side effects go away. I cut back to about 30 mg and the pain has increased, but my monster of an appetite is more normal.
I was glad to find your blog in a Technorati search. I have been taking neurontin for leg cramps (nowhere near as severe as what you describe) and I can't imagine how you can function taking it every 2.5 hours. I take 800 mg. and within an hour, my vision is impaired, I'm drowsy, and just want to lie down with my eyes closed. Even half that dose often makes me sleepy. I guess feeling sleepy is a small price to pay. Thanks for your honesty!
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