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DESCRIPTION
Paget's disease of the bone (named for Sir James Paget, who first described it) is a chronic disorder characterized by excessive bone degeneration due to irregular breakdown of bone combined with the creation of new bone that is deficient in calcium and therefore more fragile than normal bone. Paget's disease can cause bones to expand and weaken and the result is enlarged and deformed bones in one or more sections of the skeleton, bone degeneration, bone pain, arthritis, noticeable deformities and an increased susceptibility to fractures. It is usually localized to one bone but can involve many bones. Paget's disease is also known as ostelitis deformans.
MoonDragon's ObGyn Information: Osteoporosis (Overview)
Paget's disease is named after the English surgeon, Sir James Paget, who described it in 1877. Paget also discovered the worm that causes trichinosis and described what is called Paget's disease of the breast. Together with Rudolph Virkow in Germany, Paget was one of the founders of pathology.
SIGNS & SYMPTOMS
Paget's disease most often affects the bones of the pelvis, the spine, the thighs, the skull, the hips, the shins, and the upper arms. It affects more than 3 percent of Americans over the age of 40 and about 10 percent of those over the age of 80, although in rare instances it has been reported in young adults. It affects men and women nearly equally. The prevalence of Paget's disease ranges from 1.5%-8% depending on age and country of residence. The prevalence of familial Paget's disease (where more than one family member has the disease) ranges from 10-40 percent in different parts of the world. Because early diagnosis and treatment is important, after age 40, brothers, sisters and children of someone with Paget's disease may wish to have an alkaline phosphatase blood test every two or three years. If the alkaline phosphatase level is above normal, other tests such as a bone-specific alkaline phosphatase test, bone scan, or x-ray can be done.
In the early stages, the disease usually causes no symptoms, although there may be mild pain in the affected bones. As it progresses, bone pain tends to become more severe and persistent, especially at night, and to worsen with exertion. Bone pain is the most common symptom that can occur in any bone affected by Paget's disease.
Paget's disease can also lead to:
- Neck and/or back pain.
- Pain and/or stiffness in affected joints.
- Warming of the skin over the area of the affected bones.
- Unexplained bone fractures.
- Hearing loss may occur when the skull is affected.
- Headaches may occur when the skull is affected.
- Pressure on nerves may occur when the skull or spine are affected.
- Dizziness.
- Ringing in the ears.
- Impaired mobility.
- If the pelvis or a thigh bone is involved, there may be hip pain.
The disease follows a pattern of alternating remissions and flare-ups. Over time, the flare-ups gradually become worse. Sometimes damage to cartilage of the joints adjacent to the affected bone become involved, and osteoarthritis may develop. Over time, deformities such as bowed legs, an increasingly barrel-shaped chest, a bent curvature of the spine, and/or an increased head size or enlarged forehead may develop as well in advanced cases.
Other possible late complications include kidney stones (caused by immobilization), congestive heart failure, deafness or blindness (caused by the skull pressing on the brain), high blood pressure, and gout. In approximately 5 percent of cases, the affected bone undergoes malignant changes, leading to osteosarcoma (bone cancer). High-output cardiac failure can occur from prolonged increased blood flow.
The life expectancy of individuals with Paget's disease is somewhat reduced, but most live with the disease for at least 10 to 15 years.
CAUSES
The cause of Paget's disease is unknown, although some researchers suspect a slowly progressing viral infection of the bone is involved. Multiple cases of the disease within families have been reported. However, Paget's disease does not appear to be transmitted from one generation to another, a finding more consistent with an infectious disorder than with a hereditary condition.
GENERAL MEASURES - TREATMENT
DIAGNOSIS
Because Paget's disease usually does not cause significant symptoms, especially in the early stages, most cases go undetected unless discovered accidentally when x-rays or blood tests are taken for another reason.
Paget's disease is often confused with hyperthyroidism and other disorders that cause bone lesions, such as bone cancer, fibrous dysplasia, and multiple myeloma.
To diagnose Paget's disease, health care providers may use bone scans or x-rays to detect bone changes characteristic of the disease. Blood tests may detect elevated levels of alkaline phosphatase, an enzyme produced by bone-building cells, but an elevated level can be found in other conditions. Urine tests and CT scans also may be used to arrive at a diagnosis of Paget's disease. A bone scan is useful in determining the extent and activity of the condition. If a bone scan suggests Paget's disease, the affected bone or bones should be x-rayed to confirm diagnosis.
CONVENTIONAL MEDICAL TREATMENT - DRUG THERAPY
There is no known cure for Paget's disease. The goal of treatment is to control Paget's disease activity for as long a period of time as possible. However, most patients never develop symptoms and so incidentally detected Paget's disease that is not associated with symptoms may not require treatment. For those who do, drug treatment therapy can relieve and manage symptoms. Drug therapy for Paget's disease may include:
- Analgesics: Aspirin and other anti-inflammatory medications and pain medications can be useful in relieving pain.
- Calcitonin: Calcitonin (Calimar, Caibacalcin, Miacalcin) is a natural hormone given by injection and Etidronate (Didronel), a calcium regulator, which both slow the progression of the disease. Other helpful drugs are alendronate (Fosamax), and pamidronate (Aredia). A newer drug, risedronate (Actonel), appears to have a powerful effect against severe Paget's disease. It has the added advantage of requiring only 2 months of initial treatment and is given by mouth.
- Diphosphonates: Diphosphonates impair bone mineralization, which is linked to bone pain and fractures.
- Fluoride: Fluoride is sometimes used to correct deformities, relieve pinched nerves, and prevent or reduce fractures.
- Pliamycin: Pliamycin (Mithracin) is an anti-tumor drug, which can produce a remission of symptoms within 2 weeks, and further improvement in 2 months. However, this drug can also cause kidney damage and destruction of red blood cells.
FDA APPROVED MEDICATIONS FOR PAGET'S DISEASE
The U.S. Food and Drug Administration (FDA) has approved the following treatments for Paget's disease:
BISPHOSPHONATES: Five bisphosphonates are currently available for Paget's disease. As a rule, oral bisphosphonate tablets should be taken with 6-8 oz. of tap water on an empty stomach. None of these drugs should be used by people with severe kidney disease. If tolerable, bisphosphonates are the first option of treatment.
- Didronel (etidronate disodium) - tablet; approved regimen is 200-400 mg once daily for six months; the higher dose (400 mg) is more commonly used; no food, beverages, or medications for two hours before and after taking; course should not exceed six months, but repeat courses can be given after rest periods, preferably of three to six months duration.
- Aredia (pamidronate disodium) - intravenous (particularly helpful for those patients who cannot tolerate oral bisphosphonates due to gastrointestinal toxicity); approved regimen 30 mg infusion over four hours on three consecutive days; more commonly used regimen 60 mg over two to four hours for two or more consecutive or non-consecutive days.
- Fosamax (alendronate sodium) - tablet; 40 mg once daily for six months; patients should wait at least 30 minutes after taking before eating any food, drinking anything other than tap water, taking any medication, or lying down (patient may sit).
- Skelid (tiludronate disodium) - tablet; 400 mg (two 200 mg tablets) once daily for three months; may be taken any time of day, as long as there is a period of two hours before and after resuming food, beverages, and medications.
- Actonel (risedronate sodium) - tablet; 30 mg once daily for two months; patients should wait at least 30 minutes after taking before eating any food, drinking anything other than tap water, taking any medication, or lying down (patient may sit).
CALCITONIN: Miacalcin is administered by injection; 50 to 100 units daily or three times per week for six to 18 months.
CONVENTIONAL MEDICAL TREATMENT - SURGERY
Medical therapy prior to surgery helps to decrease bleeding and other complications. Patients who are having surgery should discuss pretreatment with their health care provider. There are generally three major complications of Paget's disease for which surgery may be recommended.
Fractures: Surgery may allow fractures to heal in better position.
Severe Degenerative Arthritis: If disability is severe and medication and physical therapy are no longer helpful, joint replacement of the hips and knees may be considered.
Bone Deformity: Cutting and realignment of Pagetic bone (osteotomy) may help painful weight-bearing joints, especially the knees.
Complications resulting from enlargement of the skull or spine may injure the nervous system. However, most neurologic symptoms, even those that are moderately severe, can be treated with medication and do not require neurosurgery.
CONVENTIONAL MEDICAL TREATMENT - DIET & EXERCISE
In general, people with Paget's disease should receive 1,000-1,500 mg of calcium, adequate sunshine, and at least 400 units of vitamin D daily. This is especially important in patients being treated with bisphosphonates. Patients with a history of kidney stones should discuss calcium and vitamin D intake with their health care provider.
Exercise is very important in maintaining skeletal health, avoiding weight gain, and maintaining joint mobility. Since undue stress on affected bones should be avoided, patients should discuss any exercise program with their health care provider before beginning.
PROGNOSIS
The outlook is generally good, particularly if treatment is given before major changes in the affected bones have occurred. Paget's disease occurs most frequently in the spine, skull, pelvis, thighs, and lower legs. In general, symptoms progress slowly, and the disease does not spread to normal bones. Treatment can control Paget's disease and lessen symptoms, but it's not a cure.
The Paget's Disease Foundation
120 Wall Street
Suite 1602
New York, NY 10005-4001
212-509-5335
800-23-PAGET (Toll Free)
212-509-8492 (Fax)
E-mail: pagetfdn@aol.com
Website: www.paget.org
OTHER MEDICAL CONDITIONS ASSOCIATED WITH PAGET'S DISEASE
Paget's disease may lead to other medical conditions, including:
- Arthritis: Long bones in the leg may bow, distorting alignment and increasing pressure on nearby joints. In addition, Pagetic bone may enlarge, causing joint surfaces to undergo excessive wear and tear. In these cases, pain may be due to a combination of Paget's disease and osteoarthritis.
- Hearing Loss: Loss of hearing in one or both ears may occur when Paget's disease affects the skull and the bone that surrounds the inner ear. Treating the Paget's disease may slow or stop hearing loss. Hearing aids may also help.
- Heart Disease: In severe Paget's disease, the heart works harder to pump blood to affected bones. This usually does not result in heart failure except in some people who also have hardening of the arteries.
- Kidney Stones: Kidney stones are somewhat more common in patients with Paget's disease.
- Nervous System Pressure: Pagetic bone can cause pressure on the brain, spinal cord, or nerves, and reduced blood flow to the brain and spinal cord.
- Bone Sarcoma: Paget's disease is associated with the development of osteosarcoma, a malignant tumor of bone. It is, fortunately, rare and occurs in less than 1 percent of all patients with Paget's disease. However, when there is a sudden onset or worsening of pain, sarcoma should be considered.
- Teeth Loosening: When Paget's disease affects the facial bones, the teeth may become loose. Disturbance in chewing may also occur.
- Decreased Vision: Rarely, when the skull is involved, the nerves to the eye may be affected, causing some loss of vision.
PAGET'S DISEASE & OSTEOPOROSIS
Paget's disease is not associated specifically with osteoporosis. Although Paget's disease and osteoporosis can occur in one and the same person, they are completely different disorders. But despite their marked differences, many treatments for Paget's disease can also be used to treat osteoporosis.
HOLISTIC HOME TREATMENT
Use heat to alleviate pain. Hot soaks, hot compresses, and heat lamps are all effective.
Follow an exercise program recommended by your health care provider to combat immobility.
Sleep on a very firm mattress or use a bed board. This will lessen the chance of developing spinal deformities.
During active phases of the disease, rest in bed and move or turn often to prevent pressure sores.
Accident-proof your home to help prevent fractures. Remove throw rugs and avoid slippery flooring. Install handrails next to the bathtub and toilet.
Avoid placing extreme physical stress on the bones.
Get regular medical checkups to screen for early bone cancer and to detect hearing loss. If hearing loss occurs, consider a hearing aid.
HERBS
Alfalfa and Horsetail contain minerals needed for proper bone formation and that can help to reduce inflammation.
Angelica, Cayenne (Capsicum), Feverfew, Hops, Passionflower, Skullcap, Valerian Root, and White Willow Bark work well for pain. Caution: Do not use Feverfew during Pregnancy.
Black Cohosh and St. John's Wort help both to reduce inflammation and to alleviate pain. Caution: Do not use Black Cohosh during pregnancy without consulting with your midwife.
Boneset, Dandelion Root, Nettle, Parsley, Poke Root, Rose Hips, and Yucca help to build strong bones.
Echinacea, Goldenseal, and Licorice aid in reducing inflammation. Caution: Do not take Goldenseal internally on a daily basis for more than one week at a time, and do not use it during pregnancy. Use it with caution if you are allergic to ragweed. Do not use Licorice on a daily basis for more than 7 days in a row, and avoid it if you have high blood pressure.
NUTRITION & SUPPLEMENTS
DIETARY RECOMMENDATIONS
Eat plenty of calcium-rich foods. These include brewer's yeast, buttermilk, carob, goat's milk, all leafy greens, salmon and sardines (with bones), seafood, tofu, whey, and yogurt.
Include plenty of fresh garlic in the diet. Garlic is beneficial for circulation and helps to keep inflammation down.
Avoid nightshade vegetables. These include tomatoes, potatoes, eggplant, cayenne peppers, chili peppers, sweet peppers, paprika, and pimiento. These vegetables are high in alkaloids, chemical substances with strong physiological effects. They affect the metabolism of calcium and through a mechanism not yet understood, cause calcium from the bones to be deposited in other areas of the body where it does not belong, such as the arteries, joints, and kidneys.
Use Barley Grass and/or Kelp to supply valuable minerals and other nutrients needed for bone formation.
NUTRITIONAL SUPPLEMENT RECOMMENDATIONS
Unless otherwise specified, the dosages recommended here are for adults. For children between the ages of 12 and 17, reduce the dose to 3/4 the recommended amount. For children between 6 and 12, use 1/2 the recommended dose, and for children under the age of 6, use 1/4 the recommended amount.
PAGET'S DISEASE SUPPLEMENTS & PRODUCTS
Information, supplements and products for Paget's disease, a condition that results in abnormal bone growth.
Alfa Max, Alfalfa Extract, Nature's Way, 525 mg, 100 Caps
Nature's Way Alfa-Max Alfalfa Extract capsules is a 10X extract of fresh green Alfalfa leaves.Arnica Gel, Arniflora, Topical Gel, 2.75 oz.
Arniflora is a modern pharmaceutical preparation containing 8% tincture of Arnica Montana. Relieves: Pain, Swelling, Stiffness, Bruising, Pain relieving gel for bumps, bruises, sprains, sports injuries, over-exercising, and more.Arnica Montana Tincture, 100% Organic, 2 fl. oz.
Arnica Montana is used primarily to relieve the aftereffects of falls, blows, sports injuries and overexertion.Boron Chelate, Nature's Way, 3 mg, 100 Caps
Boron Chelate helps to prevent the loss of calcium, phosphorus and magnesium through the urine.Chamomile Tincture, 100% Organic, 2 fl. oz.
Chamomile is used for the treatment of pain and inflammation in the intestines and stomach, as well as inhaling Chamomile vapor for asthma and other lung problems.Colon & Liver Cleanser, Organic, 16 fl. oz.
CAC liquid is a colon and liver cleanser and detoxifier as well as a blood cleanser that serves to regulate the bowel movements so that the stool is so soft it breaks up into a cloud.Copper Ionic Mineral Supplement, Fully Absorbable, 50 +/- ppm, 16 fl. oz.
WaterOz Ionic Copper is a pure liquid Copper supplement. Copper influences protein metabolism and general healing, improves vitamin c oxidation and is integral in the formation of RNA.Dandelion Root, Vegetarian Supplement, Nature's Way, 540 mg, 180 VCaps
Dandelion root has a long history of use as an herbal remedy, as a food, and in beverages. Dandelion root is native to Greece.Digestive Enzymes, 750 mg, 100 Caps
Since cooking destroys many of the digestive enzymes in food, taking plant fiber-based digestive enzymes aids in digesting even the heaviest meal.Dry Vitamin A & D, Nature's Way, 15,000/400 IU, 100 Caps
Vitamin A & D are both involved in the cycles of mineral and hormone balance which help to maintain normal bone formation and density. In addition, Vitamin A is an important nutrient in maintaining cell membrane integrity, and normal vision and reproduction.Glucosamine Chondroitin Liquid With Lignisul MSM, NOW Foods, 16 fl. oz.
Liquid Glucosamine & Chondroitin with MSM combines three of the most effective nutrients available today for supporting good joint health in an easily absorbed liquid form.Just An Ounce Calcium & Magnesium, Almond Flavor, 16 fl. oz.
Just An Ounce, Calcium and Magnesium Liquid can help with the development of strong bones and teeth, also prevents muscle cramping, risk of colon cancer, maintain regular heart beat, protects against osteoporosis and helps relax the central nervous system.MSM (Methylsulfonylmethane) Supplement, Pure Lignisul With Free 4 oz. Lotion, 1000 mg, 120 Caps
Buy MSM Supplement caps and get a free 4 oz. lotion. MSM supplement plays a beneficial role in connective tissue and joint flexibility, immune health, arthritis, osteoporosis, rheumatoid arthritis, inflammation, pain, hair, skin, nails, athletic injuries, acne, wrinkles and allergies.Natural Menthol Analgesic Salve, Swiss Made, Olbas, 1 oz. Tube
This Analgesic Menthol Salve delivers a combination of deep, penetrating relief of aches and pains in muscles and joints, and is particularly effective to soothe backaches and the inflammation and discomforts from arthritis, strains, bruises and sprains.O J Soothe, PCK Technologies, 500 mg, 60 Caps
This 100% natural herbal formula is based on Chinese decoctions proven effective to relieve chronic musculo-skeletal disorder symptoms, including heel pain, painful, swollen, deformed, non-flexible or stiff joints and muscles, etc. but without open wound, red-hot skin or bone fracture. The causes may include:Injuries: strain, tear, or sprain of muscle, tendon, or ligament, especially injuries happened long time ago.
In TCM (Traditional Chinese Medicine), these symptoms indicate clots or tissue debris hindered microcirculation of blood, ineffective blood component production, deficiencies in endocrine (low-Ying or low-Yang symptoms) and immune systems, etc. Also, toxins due to biological or chemical sources could be the causes of infection and inflammation. O-J-Soothe is based on time-proven herbal formulas of TCM to relieve the above symptoms by cleaning the debris, toxins and clots, improving blood components production and microcirculation, normalizing endocrine and immune systems, etc. O-J-Soothe has no known side effects except it often increases libido of users.
Autoimmune disorders: such as RA (Rheumatoid Arthritis). Degenerations of bone, cartilage, tendon sheath, etc., as pains in all osteo-joints, heels (Plantar Fasciitis), limbs, knee, shoulder, neck, waist, and back areas due to bone spurs, bursitis, prolapsed disc, osteoporosis, arthritis, osteoarthritis, etc.
Musculo-skeletal inflammations: due to chemicals, toxins, injuries, or autoimmune disorders.Overhead Traction System
This water-filled weight bag provides variable tension to alleviate pressure on the spinal column.Turmeric Extract (Curcuma longa), Standardized 95% Curcuminoids, 500 mg, 120 Tabs
Turmeric extract has become a popular herbal supplement due to the potent antioxidant properties of it's active constituent curcuminoids.Vitamin B-100 Complex W/ Coenzyme B-2, Nature's Way, 631 mg, 100 Caps
A complete Vitamin B complex of 8 essential vitamins. B Vitamins are precursors of coenzymes involved in the conversion of cellular energy, manufacture of hormones and proteins, and repair and maintenance of nerve structures.Vitamin B-50 Complex W/ Coenzyme B-2, Nature's Way, 330 mg, 100 Caps
B Vitamins are precursors of coenzymes involved in the conversion of cellular energy, manufacture of hormones and proteins, and repair and maintenance of nerve structures. They also function as lipotropics which converts fats to other useful products.Vitamin B-6 (Pyridoxine), 100 mg, 100 Caps
Vitamin B-6 (pyridoxine) is converted in the body to the main coenzyme responsible for amino acid and protein metabolism.Vitamin C 1000 With Bioflavonoids, Nature's Way, 100% Natural, 1000 mg, 250 Vcaps
Nature's Way Vitamin C with Bioflavonoids provides antioxidant protection for many of the body's important enzyme systems.White Flower Balm, 0.67 fl. oz.
Use White Flower Balm, for the temporary relief of minor aches and pains of muscles and joints associated with simple headache, arthritis, sprains, bruises, and strains.
Herbal Remedies: Paget's Disease Information
Herbal Remedies: Paget's Disease Supplements & Products
NOTIFY YOUR HEALTH CARE PROVIDER IF...
You have symptoms of Paget's disease or need to be evaluated for bone development, risk of fracture, or if you have side effects associated with any therapy or symptoms that worsen or do not improve with treatment.
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Prescription for Nutritional Healing: The A-To-Z Guide To Supplements
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Prescription for Nutritional Healing: The A-To-Z Guide To Supplements
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Prescription for Herbal Healing: The A-To-Z Reference To Common Disorders
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The Complete Guide to Natural Healing
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