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| February 2008 eNews Alert |
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Chronic illness can strain your social life, but there are many great online chat rooms and forums specifically for people with fibromyalgia (FM) to help prevent you from feeling isolated. In fact, research shows that participation in the online communities can have a favorable impact on patients, as you will read in the first feature article below. So many of the medications prescribed for FM tend to cause weight gain, but milnacipran is expected to actually produce mild weight loss as one of its side effects. The manufacturer applied to the Food and Drug Administration (FDA) on February 21st for permission to market this medication in the United States for the treatment of FM. If approved, the drug may be on the market sometime around October or November. Other drug and nondrug therapies that are undergoing testing for FDA approval are described in this month’s Alert to let you know that new treatment approaches are being explored. |
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| Participants Say Online Support is Positive |
Nielsen/NetRatings and the International Telecommunications Union estimate that more that 70 percent of the population in North America uses the Internet.1 Worldwide, that statistic averages 20 percent. With more people using the Internet, it is no wonder online forums or chat rooms are gaining popularity, even among patients with chronic diseases. So much so, that researchers in the Netherlands studied online support group participants who told them that the experience can be very empowering and positive.2 In the first study of its kind that sought information from the patients’ perspective, 30 women and two men with either fibromyalgia (FM), arthritis, or breast cancer said the overall experience gave them more confidence to take control of their own health status. A team led by C.F. van Uden-Kraan, M.D., of the Institute for Behavioral Research at the University of Twente at Enschede, looked at the benefits and disadvantages of participating in online forums. Earlier studies show that specific benefits to online support groups included no geographical barriers, 24-hour availability, reasonable cost, and the ability to remain anonymous.3 In personal interviews for the van Uden-Kraan study, participants said the process of participating in online forums allowed them to exchange information on treatment and medication, encounter emotional support even to the point of actually making new friends, find recognition from someone in a similar situation, and understanding to avoid feeling crazy. They also said that the online support allowed them a place to go that they could talk about their illness without worrying family members, and share experiences in addition to encouraging others. Participants said they also used the site for relaxation and amusement. At the same time, all those interviewed said this process helped them feel less alone or isolated, which is what happens to so many chronic illness patients. The most popular way patients found support groups online was by surfing the Internet, and those who benefitted most were either newly diagnosed or patients seeking diagnosis. One of the downsides included the fact that study participants could “outgrow” the forum, as new members would join and certain questions or topics kept repeating. Among the few other downsides correlated with the online groups included the possibility of poor quality answers or bad advice, which can be corrected through further discussion; a lack of information; information overload; or being confronted by complainers. A few participants said they did grow tired of people who only talked about themselves and were not willing to respond to others. Overall, participants felt they were better informed about their illness, which gave them
Survey participants also noted that the forum improved their acceptance of their illness, they found they had better coping strategies and they were more prone to open up about their disease in a social setting with greater confidence. Some of the participants said their new involvement enhanced their feeling of self worth and they were able to increase their number of new social contacts.
Overall, online support group participants expressed more optimism and control over their life and their future. A few notes to the study is that the participants selected were active in discussion on a regular basis and found the online support group relaxing and looked at it like a book that you put down at night and picked up the following night. The study showed that the number of active forum participants versus those who only read and “lurk” is 100 to 1.4 The researchers noted that since the participants were highly active users, they may not be representative of all users, particularly the “lurkers.” Overall, more studies with larger groups need to be done. However, in the meantime, we have included a few links to popular FM online support forums. Most are fairly simple to access, register, and use. At each website, some discussions are grouped by topic or theme, some may be medically related and others offer opportunities to discuss everything under the sun except FM. Please review the local rules and regulations at any site before entering into conversation. If you already have a favorite or helpful forum or chat room associated with FM, please let us know by sending the editor an e-mail at editor@fmnetnews.com so we can share it with others.
1. www.internetworldstats.com/stats.htm |
| Novel Way to Aid Sleep, Relieve Anxiety in Fibromyalgia |
Kim Jones, Ph.D., F.N.P., and the team at Oregon Health & Sciences University in Portland, were conducting a study looking for a correlation between growth hormone secretion and pain, but unexpectedly improved patient’s sleep and anxiety rating. The results of this intriguing study can be read on our Latest News section of our website |
| Portable Nondrug Device Being Tested for FM Pain |
Drug side effects and an inability to tolerate many medications leaves most patients with fibromyalgia (FM) in serious pain. The problem is that FM is a disease of the central nervous system, so drugs that work in the brain are bound to produce a greater amount of unwanted side effects. However, Fralex Therapeutics of Toronto, Ontario is testing a novel nondrug device (called the PRIMA) in 12 cities in the United States and four in Canada. The PRIMA is believed to favorably alter the pain processing centers in the brains of people with FM. The goal is to gain the US Food and Drug Administration (FDA) and Canadian government approval to market the portable device for the treatment of FM. What does the PRIMA device look like? It is a small portable unit designed for in-home or at-work use (see figure below). The heart of the device is a case about the size of a portable cassette player. This handheld portion generates an electric signal that is transferred to a headset that rests just above the ears, where the therapeutic “complex neural pulse” or CNP is created. The shape of the CNP wave-forms and pulse frequency were custom designed to interact with the pain processing centers in the brain. The initial research was performed by scientists at the University of Western Ontario in Canada. People using the PRIMA simply place the headset upon the head, much as one would wear a set of headphones. A button on the handheld portion is pushed, and the therapeutic waveform is automatically applied to the central nervous system of the patient for the duration of the therapy session, which is about 40 minutes. Two sessions per day are required, but they can be done while the patient is watching TV or doing a light activity (e.g., walking, cooking, working on the computer, etc.). The magnetic strength produced by the device is less than the industry standards for electric hair dryers. It does not make noise, emit light, or produce any sensation that can be felt. Your healthcare provide or pharmacists must program the small prescriber unit for the appropriate treatment settings, similar to a prescription for medication.
A recently published study looked at the effects of the PRIMA device in a small group of 17 FM patients.* Eight patients received the therapy twice daily for 40 minutes. The remaining nine patients received what is called a false or “sham” therapy. The sham group took home the portable unit to use for two 40-minute sessions per day, but the device was electronically disabled so that the CNP was not delivered. Remember, the portable unit does not generate any noise, light or sensation, so patients would not know if their PRIMA device was actually working. Although this was a small study, the FM patients receiving the CNP with the PRIMA device achieved a 25 percent drop in pain scores during the seven-day trial. The sham group did not show any improvement. After the seven-day therapy was halted, the patients who received the actual CNP therapy quickly returned to their before-treatment pain levels. This implies that the daily use of the PRIMA device is necessary, just like medications. If the device meets FDA approval, this should not present a problem because it was designed as a small portable unit. How much pain relief does one receive with a 25 percent drop in pain scores? The authors of the study cite that 80 mg per day of the opioid, oxycodone, produces roughly the same amount of pain relief in studies of chronic pain patients. Yet, unlike the many side effects that are often accompanied by opioids, safety testing of the PRIMA device in 400 patients did not produce side effects. So, the PRIMA may turn out to be an alternative to opioids, or an add-on therapy to drug treatments for FM patients to bring the pain down to more tolerable levels without adding more side effects. For additional information about the ongoing PRIMA trials, see the Treatment Studies page of our website. * Thomas AW, et al. Pain Res Manage 12(4):249-58, 2007. |
| Testing New Dopamine-Like Drug for FM | Two brain imaging studies in fibromyalgia (FM) patients showed that low brain dopamine levels are associated with the pain of this condition. In addition, one small treatment trial involving the dopamine-like drug, Mirapex, demonstrated a significant improvement in pain and sleep scores in a selective group of FM patients. Given these studies, it seems reasonable that Schwarz Biosciences, Inc. is testing Neupro (rotigotine), a dopamine-like drug to determine if it will be effective for the treatment of FM. Last May, Neupro was FDA-approved for the treatment of early Parkinson’s disease, but the manufacturer began marketing it in Europe the year before and the drug has been tested on over 9,000 patients. Neupro is in a group of agents referred to as dopamine agonists, but unlike Mirapex (which is taken orally), this new Parkinson’s agent is a transdermal patch that is designed to deliver a steady stream of the drug through the skin. The Neupro patch comes in different strengths and is replaced each day to maintain constant blood levels. Although Neupro is already FDA approved for Parkinson’s disease, two different doses of the drug are now being tested in a placebo-controlled fashion involving 30 centers in the United States. The primary goal of the trial will be to investigate the safety and effectiveness of Neupro in treating the symptoms of FM. The secondary goal will be to determine the best dose of the drug for controlling FM pain and other symptoms, while producing the least amount of side effects. This will be a Phase II trial involving 240 FM patients. If you are interested in participating or if you just want to learn more about the trial, please visit the Treatment Studies page of our website. |
| Improving Blood Flow to Brain’s Pain Processing Centers |
A series of three research papers by a team in France attempted to determine how abnormalities in brain blood flow in fibromyalgia (FM) patients is related to various pain processing centers, the patient’s pain level, and their response to ketamine. Ketamine is an anesthetic pain reliever that also blocks the NMDA receptors that magnify pain. Some FM patients will respond dramatically to ketamine, while it does not even dull the pain for others. These studies, headed up by Eric Guedj, M.D., sought to find out what ketamine does in the brain to produce pain relief and if there are blood flow differences in patients who do not respond to the drug. Comparison of the FM group with the healthy subjects showed that there were many significant differences in blood flow patterns based on their brain SPECT scans. FM patients had hyperperfusion (enhanced blood flow) to several areas in the outer layers of the sensory cortex. The sensory cortex is responsible for determining where the pain is located and estimating how much it hurts. The increased blood flow to the sensory cortex in FM patients means that this area is very active in processing the bombardment of incoming noxious/pain signals. The pain of FM is clearly visible on the SPECT scans. Ordinarily, lots of activity in the outer sensory cortex should lead to activation of the other pain processing centers that are located deeper within the brain. However, the opposite was found for patients with FM. Compared to the healthy subjects, the FM group had reductions in blood flow (meaning less activity) in the medial frontal lobe, the anterior and posterior cingulate, the cerebellum, the amygdala, portions of the hippocampus, the thalamus, the caudate nucleus, and regions located all the way down in the brain stem. So while the sensory cortex is being overloaded with pain signals, the other pain processing centers in the brain are under-performing and it is no wonder why FM patients experience serious pain.
Identifying Ketamine Responders The second study looked at the brain SPECT scans before and after the subjects were given an intravenous infusion of ketamine.2 Eleven of the 17 FM patients responded with a 50% or more drop in pain scores, but six did not respond. Looking at the SPECT scans prior to ketamine, the research team found a difference between the patients who responded to the drug and those who didn’t. People who did not respond had a greater decrease in blood flow in the center portion of their frontal lobe than those who found relief with ketamine. The center area of the frontal lobe is important for regulating the brain’s response to pain. Ketamine’s Effect on Brain Blood Flow What does ketamine do to the brain’s blood flow to cause a significant reduction in pain? This was the question asked and answered by the third study.3 The SPECT scans showed that ketamine did not alter the hyperactivity in the outer sensory cortex, but it did increase the blood flow to the deeper pain processing structures in the brain. In fact, the greater the increased blood flow produced by ketamine, the greater the patient’s pain relief. For patients who do not respond to ketamine, it just means that their pain may be more strongly driven by malfunctions of other areas in the brain that ketamine does not influence (such as the center portion of the frontal lobe). Does this mean you should try ketamine? Not necessarily. Ketamine can be formulated into a nasal spray, but its use is limited by its side effects and doctors do not generally prescribe it. Instead, you may try a related drug, dextromethorphan. It is available in cough syrups, but to effectively dose up to amounts that have been shown to be beneficial in FM patients, you may want to ask your doctor for a prescription to get the drug compounded. No one sells oral tablets or capsules of dextromethorphan, so it must be prepared at a compounding pharmacy. One study showed that the average effective dose for FM patients was 150 mg/day (i.e., 50 mg three times a day). However, you should probably start with 25 mg capsules and dose up slowly to minimize side effects. 1. Guedj E, et al. Eur J Nuc Med Mol Imaging 34:130-4, 2007. |
| May 12 Awareness is on its Way |
The Fibromyalgia Network invites you to join in on the May 12 Awareness Day activities. Think about how you might want to get involved in raising awareness of fibromyalgia and related disorders. The campaign is designed to minimize your time and energy. We have colorful posters, bookmarks, and pins to stir up publicity in your town—all for the cost of postage. We are also open to your suggestions to find out if there are other materials we can provide that would be helpful for your awareness activity. E-mail us at editor@fmnetnews.com with your ideas. Visit our May 12 Awareness information online for more details. |
Please don’t be shy about providing us with feedback on awareness items or topics for upcoming articles. We value everyone’s input and want to make sure that we address the issues that bug you the most. Kristin Thorson & the Staff of FM Network |
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are for informational purposes only. You must consult your physician for
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