USATaken from the April issue of "The Fibromyalgia Network Newsletter. Dr. Natelson is a neurologist in Newark, New Jersey:
" The one drug that I have added to my practice with some encouraging success in the past year is Xyrem. It's a strong sedative medication that improves deep sleep. About one in four patients respond really well to this drug, with a substantial reducation in pain. Unfortunately, roughly 50% don't notcie any benefit and 25% cannot tolerate the side effects.
The recent double-blind placebo controlled Xyrem trial in FMS patients showing that it reduced pain piqued my interest because I would like to know if there is any particulare quality in the paitnets who react well to this medicine. Did it treat the CFS that is often part and parcel of FMS, or did it treat the FMS alone? In other words, does the drug treat an underlying sleep disorder, which leads to severe fatigue and widespread muscle pain? Or is the drug capable of relieving the pain in a person with FMS who does not have the accompanying fatigue? To answer this question , I am launching a double-blind, placebo -controlled trial of Xyrem in patients with CFS but who do not meet the paiful criteria of FMS. This study will be the first step at separating the effects of the drug on fatigue and pain.
Currently, the method I use for considering Xyrem in a patient is as follows: 1) they must meet the criteria for FMS because there is no data to show that it works in CFS and the insurance companies will not pay for it, 2) they have severely disturbed slep that is not due to an underlying sleep disorder (such as apnea or restless leg syntrome) and they have not responded to other treatments, and 3) due to safety reasons, they cannot have young children in the house or live alone. Although Xyrem is only dispensed through one central pharmacy, prescribing the medication is easy. I just have to fill out the pharmacy's form, instead of my own prescription pad, and fax it in.
As a neurologist, I often use antiepileptic drugs (AEDs) to help control pain. There appears to be an overlapping neurological system involved in epilepsy, depression, and pain because medications and therapies, like VNS (vagas nerve stimulation), all seem to exert an impact on those same systems. AEDs are often good at relieving migraine and they are effective at reducing burning pain. However, their ability to treat the dull, achy, widespread pain of FMS is not easy to predict. I start one person on one AED and if it helps but the pain is still bad, I will usually add a second AED with a different mechanism of action.
If cost is an issue, Neurontin and Lamictal are off-patent and relatively cheap. If a person has insurance, I may prescribe Lyrica or Tileptal because they only have to be taken twice a day, while the others must be taken more frequently. AEDs may be sedating and can reduce nocturnal pain; these effects can lead to improved sleep.
It takes 2-3 months to reach the target dose of 2,400 mg/day of Neurontin (taken in four divided doses). The target dose for Lamictal is 100 mg three times a day, Trileptal is 600 mg twice a day, and Lyrica is 150 mg twice a day. If a patient does not receive ny benefit or the side effects are intolerable, I switch them to a different AED.
Patients may benefit from a health care professional or coach, whom they can communicate with about their abilities and illness concerns. Psycholgoists working at pain management centers may be suitable coaches, or check www.adademyofct.org. Specify up fron that you want help coping with your physical symptomst, not just emotional-relate counseling."
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