When we arrived home from vacation last week, one of the waiting pieces of mail was from my insurance company. They had made a pre-certification determination on my rheumatologist’s prescription for peripheral neuropathy caused by my lupus. My doctor and I had discussed my increasing need to use pain medications to “drown out” the neuropathy pain to get to sleep. My doctor had agreed with me that maybe there was a better way to deal with the neuropathy, and prescribed Lyrica (pregabalin).
All I know is I need rest, and don’t like the idea of taking narcotic or other habit-forming drugs on a frequent basis, just to escape the night-onset neuropathy pain that is disrupting my sleep.
Read a little more about lupus neuropathy from LFA webinar transcripts by a leading neurologist, Robin L. Brey, M.D.*:
The American College of Rheumatology has identified 19 different ways that lupus can affect the nervous system, and the specific signs depend on which one of these it is. Some common big categories include memory loss, seizures, stroke, depression, anxiety, headache, and neuropathy.
In lupus, it [neuropathy] is usually caused by inflammation or vasculitis of the nerves, but peripheral neuropathy is most common in people with diabetes or kidney disease, both of which can be seen in lupus either due to disease activity or side effects to medications used to treat lupus. Often, neuropathy gets better and does not lead to something worse. Fortunately, nerves can regenerate once the cause of the neuropathy is found and treated.
We are not really sure how lupus affects the peripheral nerves exactly. In some patients, it is due to vasculitis, which is very serious and must be treated aggressively with “chemo” type drugs. In most patients, however, it is probably due to inflammation (similar to what you have going on in the joint when you experience arthritis) that is affecting the peripheral nerves. Fortunately, peripheral nerves can recover completely with the right treatment.
Reading the letter, I learned that my insurance company denied my doctor’s request for the Lyrica for a number of reasons. First, it wasn’t listed on the formulary. Then, they suggested that Neurontin, an anti-seizure medication, is available instead. Interestingly, Neurontin costs about 1/4 the cost of Lyrica. If diabetes or kidney disease were the cause of my neuropathy, they would pay for it without a problem.
My doctor wanted to see me 30 days after starting the drug, just a few days from now, but followup without taking the new drug seems somewhat pointless. I am not sure how to proceed, so my next rheumatologist visit will probably be used to come up with a new game plan for treating the neuropathy.
I have comparatively great insurance, but still meet these obstacles in getting medications. I can only begin to imagine the difficulties people with medicare or other similar insurance plans have getting their medications approved. Neither Neurontin nor Lyrica are “on label” approved by the FDA for lupus neuropathy, and they cited some complex set of treatment and coverage guidelines as justification for denying the coverage.
I will accept this obstacle as a necessary step in determining the best course of action, realizing that the American medical and insurance systems are not for the passive or faint of heart. I assume my rheumatologist will appeal the decision, so we will wait and see what he recommends from here.
* Dr. Brey is a Professor of Medicine in the Division of Neurology at the University of Texas Health Science Center at San Antonio (UTHSCSA). She is the Associate Dean for Research of the UTHSCSA School of Medicine and the Deputy Director of the Institute for Integration of Medicine and Science. Her research interests include the study of the relationship between antiphospholipid antibodies and stroke as well as neuropsychiatric manifestations of Systemic Lupus Erythematosus (NPSLE).
Dr. Brey now serves on the Executive Committee of the Scientific Advisory Committee for the Lupus Foundation of America (LFA) and the LFA executive committee to study lupus flares. Dr. Brey also serves on the American Academy of Neurology (AAN) Board of Directors and is the Chairperson for the AAN Public Relations and Media Relations Committee. She was the founding section editor for the Patient Page in Neurology and serves as the Editor-in-Chief of Neurology Now, the AAN publication for neurology patients, their families and the lay public.
Read Dr. Brey’s physician education presentation about Neuropsychiatric Lupus at http://www.lupus.org/webmodules and transcripts of Lupus Foundation of America webinars from which the above quotes were taken, at Neurology/CNS & Lupus and Neurology and Lupus.