Psoriatic Arthritis List NEWSLETTER

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News & Views Newletter
edited by Jack Nicholas, cornishpro@aol.com

PSORIATIC ARTHRITIS NEWS AND VIEWS
VOL. 3 ISSUE 16 - September 15, 2003
PSORIATIC ARTHRITIS MEDICAL NEWS

FIBROMYALGIA: TREATMENT UPDATE
By Kim Jones, RN, PhD, FNP - WebMD Live Events Transcript

If you are one of the 4 million Americans suffering from the chronic pain of fibromyalgia, see what researcher and WebMD message board expert Kim Jones, PhD, RN, FNP, had to say. She joined us to answer questions and share the latest treatment information about this debilitating disorder.

The opinions expressed herein are the guest's alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Member question: Will a restricted diet help?

Jones: There are about five studies on diet and fibromyalgia right now. One of those five indicates that a very strict raw uncooked vegetarian diet is somewhat helpful. However, most of the people in that study dropped out in less than three months because it is almost impossible to eat like that long term. So right now we think the best advice is to follow a well-rounded diet, much like that prescribed for heart disease.

Member question: Will a balanced carb-protein-fat diet plan be helpful?

Jones: We are currently doing a research study in which we are asking people with fibromyalgia to tell us whether an Atkins-type high-protein, low-carbohydrate diet is any better than a well-rounded high complex-carbohydrate, moderate protein, and lots of fruits and vegetables diet.

Our early impressions are that an Atkins type diet is not helpful.

Member question: I was told by a naturalist that it is something that could be overcome? Do you feel that is true?

Jones: I do not believe that someone with fibromyalgia can think himself or herself well, any more than someone with cancer, diabetes, or heart disease could overcome their disease.

Member question: Are you saying people with FM cannot think?

Jones: Perhaps I was not clear in my response. People who believe that all someone needs to do is believe they can get better are essentially blaming the victim. People with FM need appropriate medical care and understanding about the seriousness of their symptoms.

As to the question, "Can people with FM think?", the answer is that approximately 70% of people with FM report cognitive difficulties. Fortunately, these cognitive difficulties are not the same type experienced with Alzheimer's disease, nor do we have any evidence that people with FM degenerate into Alzheimer's or other severe cognitive syndrome. However, cognitive therapy is helpful in FM, particularly things like reducing the frequency of multi-tasking, making lists, and establishing habits. We send people with FM to our speech therapist who specializes in these types of cognitive tricks and find that people's quality of life improve dramatically when they have more control over their cognitive ability.

Member question: Is myofascial pain syndrome close to FMS or is it like apples to oranges?

Jones: Myofascial pain syndrome is fibromyalgia without central sensitization. Central sensitization is the brain and spinal cord being on overdrive. It is analogous to turning the amplifier up on a stereo. Noise is louder, lights are brighter, cold is colder, pain is more painful, and even touch is painful. So people with myofascial pain syndrome have pain in various tenderpoints but they don't necessarily have central sensitization.

Member question: My daughter is a young, quite fit, active woman (25). She has been diagnosed, after years of tests, with fibromyalgia. To control the pain

and help with the sleeplessness she was given tricyclic drugs. Within a short time, she suffered a seizure (first ever). During the subsequent tests it was discovered that her brainwave patterns "spiked" occasionally. The drugs have been discontinued (at the advice of a specialist in epilepsy). Currently her only treatment is walking (2-3 miles a day), Ambien, and the guaifenesin protocol.

Some circles suggest that brain activity such as my daughter's could be preventing restorative sleep and such a cycle keeps her muscles from daily repair resulting in fibromyalgia. What are your thoughts on this possibility? Her epilepsy specialist does not have her on seizure medication (since she has had only one seizure and that one MAY have been caused by the meds) and her rheumatologist does not know of a link between the two conditions. Is there any investigation concerning brain-wave activity (interrupted) and fibromyalgia? Can seizure medicine smooth out the spikes and allow her to get "normal" sleep and thereby lessen the effects of fibromyalgia? Are brain "spikes" a permanent condition? Thank you for any information.

Jones: It sounds like your daughter may have two separate diagnoses: Fibromyalgia and a mild seizure disorder. This means that we have to be careful about her fibromyalgia medications, because some common fibromyalgia medications lower the seizure threshold and could bring on a seizure. However, she still needs treatment for her pain and disrupted sleep. I would consider talking to her doctor about taking medications such as Ultram or Ultracet for pain, Ambien for sleep, and/or Neurontin for pain and sleep.

As to the pathophysiology of sleep-wave abnormalities in fibromyalgia, we have known since 1976 that people with FM have sleep-wave abnormalities. Specifically they're thought to have something called Alpha wave intrusion in deep sleep. These Alpha waves wake people up or almost wake people up several times an hour. Therefore they almost never get into stage 3 and 4 sleep. Stage 3 and 4 sleep is the period that many restorative chemicals are released from the brain.

One of these chemicals we study at my university in Oregon is growth hormone. Growth hormone is released during deep sleep and during intense exercise. But we have found that in fibromyalgia growth hormone is not released during intense exercise, so we are conducting a study in which we are giving a medication called Mestinon, which allows the release of growth hormone during exercise. We hope to finish this study by spring 2004 and will share the results as soon as we have them.

Member question: Can you comment on whether there is any connection between fibromyalgia and orthostatic tachycardia and orthostatic hypotension?

Jones: Postural orthostatic tachycardia syndrome, which is abbreviated POTS, is sometimes found in fibromyalgia. This is a condition of dysautonmia. When people lie down and then stand up, their heart races. Sometimes it races so much that they can't get adequate blood flow to their brain and feel like they're going to pass out. There are medications available to slow the heart rate if you have POTS.

The next condition you mentioned is neurally mediated hypotension. This is more common than POTS. This gives you feelings of fatigue that are often more bothersome than pain. To test for neurally mediated hpotension, ask your health-care provider to check your blood pressure while lying down flat on your back and then again immediately when you stand up. If the top number of your blood pressure drops 15 points or more you need a tilt table test to see if you have neurally mediated hypotension. If you do have it, there are sodium-conserving treatments available, such as increasing the salt in your diet or taking prescription medications such as Fluronef.

Member question: Do you believe that some FM diagnoses could actually be the result of multiple other health issues that are not serious on their own but cause debilitating illness such as FM in combination? Example, if a person has a sleep disorder, TMJ, mild MVP, mild disc compression in neck plus needs glasses, this could explain the fatigue, aching of muscles, dizziness, headaches, shoulder and arm pain, irritable bowel, and countless other FMS symptoms. I guess I am still in denial about my FMS diagnosis and feel like there should be an explanation for my pain and other symptoms.

Jones: The reason for your symptoms and also the reason that people have FMS is central sensitization. As discussed earlier, all the sensations in your body are amplified. For example, what someone without FMS may experience as a mild abdominal cramp may feel overwhelming for someone with FMS. That may lead them to see a doctor to get a diagnosis for their abdominal pain, which is often found to be irritable bowel.

Why do some people with chronic pain or disrupted sleep get FMS and others don't? The answer is probably genetics. There are thought to be 20 or so genes involved in the expression of FMS. If you have a lot of those genes, it will take very little environmental insult, such as an accident or prolonged stress to get your FMS going. If, however, you have very few genes for FMS, then you may never experience the disease or you may only experience it if you have chronically disrupted sleep or chronic pain from another source such as an accident or arthritis. Remember that many more people have insomnia than have fibromyalgia, so it's not as simple as just not sleeping well or all of those people with insomnia would also have fibromyalgia.

Member question: Why is it sufferers are more sensitive to cold? I simply cannot stand it and I live in the Northeastern U.S.

Jones: People with fibromyalgia are more sensitive to temperature, especially cold, due to sensitization. We are currently conducting a study in Oregon in which we are examining touch fibers called "A" fibers and pain fibers called "C" fibers in people with fibromyalgia. What we expect is that people's touch fibers will be normal, but their pain fibers will be overly sensitive. We are doing this with cold water, because cold temperatures are known to be very problematic in fibromyalgia.

Please post on our message board for tips about feeling more comfortable in the cold. Our members have lots of good ideas.

Member question: I have had tremendous memory problems and am quite scared about it.

Jones: People with fibromyalgia have been found to have cognitive abilities that are similar to people who are 20 years older than they are. The most common deficits are decreased attention, decreased ability to multi-task and decreased short-term recall. Fortunately, there are ways to improve all of these. Also, people with fibromyalgia do not generally progress to serious neurodegenerative diseases such as Alzheimer's. Often we find that if people can get some relief from their pain, their disrupted sleep, and depression and anxiety that their cognitive abilities improve.

Member question: I am one of those people who have Alpha wave intrusion. During a sleep study last spring it was discovered that I go from wide-awake to REM sleep. I totally skip stage 3 and 4. Have you found any medications that could change that sleep pattern, and possibly allow me to get some restorative sleep?

Jones: What you describe is very common in fibromyalgia. There is currently not a single medication that is equally effective for all people. You might try Ambien or Trazadone or Pregablin under the supervision of your doctor. We generally decide if people are getting better based on how refreshed they feel in the morning as opposed to sending them back to the sleep lab. At our university, sleep studies are approximately $2,000 so we reserve them for people who have symptoms of sleep apnea. Symptoms include loud snoring with periods of not breathing at night.

Member question: Have any studies been done on the correlation of FM and multiple pregnancies?

Jones: No. We have zero studies about FM and pregnancy. We get lots of postings on the message board about medications to take for FM during pregnancy, but there is currently no research about the course of FM during pregnancy.

Member question: If I have FMS, would there be any point in having a sleep study to determine if I have a sleep disorder? I doubt it is sleep apnea or anything serious and I am already on meds for sleep, so would it be any help at all to know what sleep disorder I have? I have been considering paying out of pocket for this for several years.

Jones: If you don't have symptoms of sleep apnea you can probably manage your fibromyalgia without a sleep study. The most common sleep disruption other than the Alpha wave intrusion is called restless leg syndrome. RLS feels like pain, numbness, tingling, something crawling on your legs, while you're sitting still, such as sitting in movie, riding in a car or trying to sleep at night. Symptoms usually get better if you rub your legs or get up and walk.

If you have symptoms of RLS, we generally try to treat with medication instead of having a sleep study first, and the medications we commonly use are Sinemet or Requip or Mirapex. Approximately 50% of people with FM also have RLS.

Member question: Please tell me about Pregablin. Is it in the same family of meds as Neurontin? I have tried the others, with no success.

Jones: Pregablin is essentially a second generation Neurontin. We hope that it will improve sleep and improve pain in FM. However, it is very new, and like any new medication we won't really know how well it works until several thousand people have tried it. I'm a bit biased toward using older medications for the first year or so a new medication is out.

Member question: What pain meds have you found to work best -- especially for the neck and shoulder areas? I've been taking Darvocet for years and now have added a half tablet of Valium when neck is worst. Sometimes it helps, sometimes not.

Jones: Let's talk about pain management with medication in FM. If the pain is in a very local spot, such as just the muscles around the neck, then it can often be treated with injections of numbing medication, such as Procaine or Botox. However, most people with FM have pain all over and we can't inject people's entire bodies so we need to treat with oral medication.

We start with non-narcotic medication, such as Ultram or Ultracet, then we often move to short-acting narcotics, such as Flortab or Vicodin. Then we may move to long-acting narcotics such as Oxycontin and MSContin. We also use Methadone for people that need longer-term pain relief. Like with all medications, one has to consider if the side effects are worse than the improvement in pain. Unfortunately, this is still largely trial and error, so you often have to try several medications until you find one that improves your quality of life without giving you intolerable side effects.

Eventually we will be able to measure your blood and tell genetically which medications will be best for you as an individual. But we're not that advanced yet.

Member question: Kim, are you able to tell us about the recent trial that you did at OHSU regarding using a drug (was it Mestinon?) for fibromyalgia? Do you have any results to report yet, and if not, where could we go to get those results when they become available?

Jones: We are currently about three-quarters of the way finished with a study funded by the National Institutes of Health. The study is looking at the combination of three times a week exercise plus a drug called Mestinon. This drug has been found to allow growth hormone to be released from the pituitary during the stress of exercise. If people can release growth hormone, they should theoretically have less muscle damage and therefore fewer tenderpoints and less pain. They should also be able to sleep better and have better exercise tolerance.

It is still too early to analyze our data, so we don't have results to report yet. We hope to have preliminary reports to report at the International Conference on Pain, called MYOPAIN, in Munich, Germany, July 2004. We will also publish our results in medical journals and post our results on our web site www.myalgia.com.

Member question: I've had FM/CFIDS with migraines, etc. since an auto accident in April of 1997. My doctor has recently asked if I was ever abused as a child. He said that he has been asking all his FM patients and that most of them had. Have you found any truth to this in your research? If so, why does it take the trauma of an accident, etc., for it to rear its ugly head?

Jones: Good question. We think that people who have had adverse life events, such as childhood abuse, living with parents who are alcoholics, being in the stress of a natural disaster or military combat may change one's "flight or fight" reflex. If this reflex is changed long enough, one is more likely to stay in the fight side of the flight or fight reflex. This is thought to change brain chemicals such as corticotropin-releasing hormone. Corticotropin-releasing hormone changes the way the brain allows other chemicals to respond to stress.

The fact remains, however, that everyone who was abused as a child or lived with parents of alcoholics or served in the military do not develop fibromyalgia, so we think it's the combination of genetic predisposition plus environmental accidents, trauma, prolonged stress, or illness that activate fibromyalgia.

Member question: Kim, I have been dignosed with FMS then lupus then back to just FMS. Is this normal?

Jones: Lupus is an autoimmune disease. Fibromyalgia is not an autoimmune disease. Having an autoimmune disease such as lupus or rheumatoid arthritis increases the likelihood that you will develop FM; however, it is unlikely that you will develop an autoimmune disease if you have fibromyalgia.

Member question: I have an older sister recently diagnosed with fibromyalgia; what are my chances for developing this condition?

Jones: We have known for many years that FM runs in families. Now that we understand genetics better we're seeing objective evidence of this as well. My question for you would be, how many people in your family have chronic pain? If only your sister does then your chances are lower. Also if it took a severe environmental insult such as a serious accident and prolonged stress to bring on your sister's FM, then it is unlikely that you have much genetic predisposition.

Moderator: Our thanks to Kim Jones, PhD, RN, FNP, for sharing her expertise with us. For more information, please visit the Fibromyalgia/CFIDS Condition Center at WebMD.

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Editors Note: The following article is just as relevant today as when written in 1999.

PSORIASIS CAUSES DISABILITY THAT EQUALS OTHER MAJOR MEDICAL DISEASES

SCHAUMBURG, ILL. (December 6, 1999) - Psoriasis, a chronic and often painful skin disease that can be difficult to heal, afflicts approximately 2 percent of the U.S. population. Psoriasis costs the nation between $2 billion and $3 billion each year and is associated with a high risk of suicide. The article, "Psoriasis Causes As Much Disability As Other Major Medical Diseases," published in the September 1999 Journal of the American Academy of Dermatology, explored the impact of psoriasis on health-related quality of life (HRQL) compared to that of other major medical diseases.

"The historically narrow view of health care as an effort to reduce symptom severity or reverse disease progression has given way to a more comprehensive view that effective treatment should also improve the patient's functional level and overall well-being," said Steven R. Feldman, MD, Director of the Westwood-Squibb Center for Dermatology Research, and an author of the published article. "Although psoriasis is clearly a significant public health problem, without knowing whether psoriasis is associated with more dysfunction or disability than other diseases, decisions about where to spend precious public funds and private health care dollars are difficult to make."

Psoriasis interferes with daily functions, generates psychological distress, and disrupts social relationships. The findings of the study confirmed what psoriasis sufferers have long known - psoriasis can cause as much disability as other major medical diseases.

Health-related quality of life (HRQL) is an evaluation of the influences of a patient's current health status and on their ability to achieve and maintain a level of overall functioning that allows them to pursue valued life goals. The HRQL assesses eight domains of health status: physical functioning, role functioning related to physical status, bodily pain, general health, vitality, social functioning, role functioning related to emotional status, and mental health.

Patients with psoriasis reported reduction in physical functioning and mental functioning comparable to that seen in cancer, arthritis, hypertension, heart disease, diabetes and depression. Some aspects closely associated with a negative impact on the physical dimension of HRQL include burning sensations, joint pain, and how the bones/joints look. "Scales falling off" was predictive of higher physical functioning, indicating that patients who report better physical functioning tend to be bothered more by scales falling off.

Aspects associated with a negative impact in the mental dimension of HRQL include itching, skin soreness, and the negative dismissive attitude about psoriasis that some patients sense from their doctors. The time it takes for patients to care for their psoriasis each day is positively related to mental health, suggesting that people who feel better spend more time caring for their psoriasis than those who feel poorly. Finally, "perceptions of not having control over their psoriasis" was negatively associated with bodily pain as well as overall mental health.

This study shows that HRQL is markedly reduced in patients with psoriasis, and psoriasis impacts all dimensions of HRQL. It also showed that disease severity and HRQL are related. With psoriasis, there can exist a very broad range of lesional severity.

The comparison of psoriasis with other chronic, debilitating medical and psychiatric conditions suggests that, though not life threatening, psoriasis can severely threaten the quality of life. It ranked even more detrimental to quality of life than even angina or hypertension. From the results of this study, it appears that psoriasis can be physically and emotionally debilitating and is not simply a cosmetic nuisance.

"These results suggest that physicians planning treatment for patients with psoriasis should consider the severity of skin lesions and psychological and social aspects of the disease. The challenge to behavioral medicine researchers is to develop adjunctive treatments that when used in combination with standard biological treatments result in measurable improvements in lesional severity and HRQL," stated Dr. Feldman.

Psoriasis is a paradigm for skin diseases in general. Managed care pharmaceutical professionals need to take into account the severe nature of skin disease when deciding what medications to cover. Moreover, because of the severe nature of these conditions, access to dermatologic care should not be impeded.

The impact of psoriasis is seen both in disease-specific measures as well as in global HRQL measures. The negative impact is on physical, psychological and social dimension of quality of life and can be greater than that created by even life threatening illnesses. While there are a number of effective treatments available to manage psoriasis, effective treatment must also give attention to the multiple features of the illness and support the need for multidimensional treatment models.

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NEW TREATMENTS FOR PSORIASIS GIVE DERMATOLOGISTS MORE CHOICES FOR TREATING MILLIONS OF AMERICANS WITH HARD TO TREAT SKIN CONDITION NEW YORK - American Academy of Dermatology

Ask anyone with psoriasis what is the worst part of this chronic skin condition and you're likely to get a number of different responses. "It itches." "It doesn't go away." "There isn't a cure." "I've tried everything." "It's embarrassing." While the condition varies in severity from person to person, one thing is constant: psoriasis can take a toll on your health, physically and emotionally. But now, thanks to a surge in new treatment options developed over the last few years, psoriasis patients have more hope than ever in finding a treatment that works for them.

Speaking at the American Academy of Dermatology's summer scientific meeting in New York, dermatologist Mark Lebwohl, MD, Professor and Chairman, Department of Dermatology, Mount Sinai School of Medicine, New York, discussed the latest developments in both topical and systemic psoriasis medications.

Psoriasis is a recurring, noncontagious skin disorder that is characterized by raised, thickened patches of red skin covered with silvery-white scales. Psoriasis can range in severity and affect any part of the body, including the nails and scalp. It is estimated that six to seven million Americans have psoriasis, and each year 150,000 to 260,000 new cases are diagnosed - making psoriasis the second most common skin disorder in the United States.

"With psoriasis, patients are oftentimes very frustrated because it's a condition that causes them discomfort physically and also emotionally," said Dr. Lebwohl. "I have patients that won't wear short sleeves because the psoriasis on their elbows is so bad that they don't want people to see it. Their quality of life really suffers, and that's why it's encouraging to see so many new treatments in development."

Topical Therapy

For decades, topical corticosteroids have been the mainstay of topical psoriasis treatment. While these medications have usually been in the form of creams, ointments and lotions, new vehicles that are more cosmetically appealing to patients and allow better penetration and efficacy have recently been introduced.

One new topical medication that has been approved by the U.S. Food and Drug Administration (FDA) to treat moderate to severe scalp psoriasis is the foam clobetasol propionate. In foam form, clobetasol propionate penetrates the skin easily - enhancing the effectiveness of the treatment.

"Patients like the foam because it's easy to use and not as messy as other topical medications," explained Dr. Lebwohl. "That's important because patients who like the product and see results will be more inclined to stick with the treatment regimen over time. In addition to being highly effective in treating scalp psoriasis, new studies also demonstrate its efficacy in treating psoriasis on the torso and extremities as well."

Other topical therapies that are not corticosteroids are also rapidly gaining use for the treatment of psoriasis. Tazarotene, a retinoid made from vitamin A that has been available in a gel formulation, has recently been introduced in a cream formulation that is better tolerated by many patients. New vitamin D analogues, such as calcitriol, have been approved outside the United States for the treatment of psoriasis and are currently under investigation here.

Topical immunomodulators (TIMs) such as tacrolimus ointment and pimecrolimus cream have recently been introduced for the treatment of atopic dermatitis, another chronic skin condition in which the skin becomes itchy, dry and inflamed. In recent studies, tacrolimus ointment has been shown to be highly effective for treating psoriasis on the face and other areas prone to sensitivity and side effects from steroids. Tacrolimus ointment can also be safely used on the eyelids and, unlike topical steroids, does not cause cataracts or glaucoma.

Systemic Therapy

Biologic agents are being introduced for the treatment of psoriasis and have substantial advantages over previously used systemic therapies in that they do not cause kidney or liver damage and have fewer risks and side effects than traditional therapies. Two of the therapies currently being used, etanercept and remicade, are already available for the treatment of rheumatoid arthritis and Crohn's disease. Both therapies are TNF blockers, which work by interfering with specific immune responses that are responsible for psoriasis.

"Etanercept has been shown to be dramatically effective for psoriatic arthritis and recently has been shown to improve psoriasis as well," explained Dr. Lebwohl. "Patients administer etanercept by injections at home and that makes it convenient for them because they don't need to go to a doctor's office for each treatment. Remicade, on the other hand, is given by intravenous infusion and has been shown to produce marked clearing of psoriasis lesions."

Two other biologic therapies that are currently not FDA approved but are showing promising results in clearing psoriasis are alefacept and efalizumab. Both of these biologic agents work by blocking the overactivation of T cells, which are a type of white blood cell in the body responsible for triggering immune responses that cause psoriasis.

"One of alefacept's greatest advantages appears to be the long durations of remission reported by psoriasis patients being treated with this therapy," explained Dr. Lebwohl. "What's great about efalizumab is that it works rapidly to treat psoriasis, allowing almost immediate relief in most cases. Another advantage is that patients can administer this therapy by injection at home."

"The latest developments in psoriasis therapies are really a positive step forward in finding innovative ways to treat this chronic skin condition," said Dr. Lebwohl. "As more and more research is being conducted in this area, I'm confident that dermatologists can help more psoriasis patients than ever before find the best therapy available for their condition."

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On a personal note, our dear friend from "down under" Gordon Elliot is going through very difficult times right now, so please keep Gordon in your heart and thoughts each day. He is a very special person to all of us.

Good Health to all,

Jack Nicholas
Newsletter Editor
Cornishpro@aol.com
Issue 2003 9/15/03-16