excrutiating pain - help!
I have had Lupus for 6 years with a recent flare-up that can't get controlled. Started Cytoxan again but it is not working and kidneys are still spilling protein, pain has gotten the worst and I can't walk and scream in pain. Can't work th last few days or use my hands etc. Back up to 60mg Prednisone, no luck yet. Don't know what else to try. Been reading about gluconutrients, does anyone have any info on this? I am ready for any answers or help right now. Hurting real bad.
There are several different reasons for joint and muscle pain with lupus. In fact, joint and muscle pains are very common symptoms of systemic lupus erythematosus (SLE). Ninety percent of people with lupus will experience joint and/or muscle pain at some time during the course of their illness. The problems of patients with the joint and muscle inflammation of SLE are varied. Frequently, the aching pain in joints (arthralgia) and muscles (myalgia) may mimic a viral or flu-like illness. Others may have the characteristic symptoms of arthritis, that is, joints that are not only painful but also swollen, warm and tender. Still others with intense muscle inflammation (myositis) may have progressive weakness and loss of strength in addition to muscle pain.
Joint and/or muscle pain can occur at any time during the course of SLE, or may even precede the other symptoms of the disease by months or years. A diagnosis of SLE must be based on a thorough physical examination, a detailed medical history and the results of specialized laboratory tests in addition to symptoms of muscle and joint pain. The joint pain of lupus arthritis often comes and goes. Individual attacks may last several days or weeks and then subside, only to recur at a later date. The joints farthest from the trunk of the body (i.e., fingers, wrists, elbows, knees, ankles) are most frequently involved, usually several at a time. Stiffness and pain in the morning, which improves as the day goes on, is characteristic of lupus arthritis. Later in the day, as you become more tired, the aches may return. Another characteristic of lupus arthritis is that the pain is usually symmetrical, which means that it affects similar joints on both sides of the body.
Unlike osteoarthritis, lupus arthritis does not usually cause deformities or destruction of the joints. This lack of damage to the joints is observed both clinically and by x-ray, even after months of joint symptoms. Lupus Myositis Unlike the joints, the muscles can be seriously damaged by SLE. This damage may result in muscle weakness and loss of strength unless early, appropriate treatment is given. Inflamed muscles may not only be painful, but may also be tender to the touch. Muscle weakness is the most common symptom of lupus myositis.
Characteristically, the muscles of the trunk of the body are affected (i.e., neck, pelvic girdle and thighs, shoulder girdle and upper arms). Pain in the small muscles of the hand or weakness of the grip are not symptoms of SLE myositis. However, nerves as well as muscle fibers can be caught up in the inflammatory process and, occasionally, weakness of the wrists and hands or the ankles and feet may occur as a result of nerve damage. Corticosteroids (Prednisone) are necessarily prescribed for the treatment of SLE myositis. High doses (50 mg. per day or more of Prednisone or equivalent) are initially given for prompt suppression and control of the inflammation. The steroid dose is gradually reduced as the inflammation subsides, as determined by the patient's symptoms and enzyme levels in the blood. The vast majority of people with lupus respond promptly and well to corticosteroids. It is seldom necessary to augment treatment with cytotoxic or immunosuppressive medications.
Once the acute, inflammatory phase is past, a well directed exercise program should be started to help the patient regain normal muscle strength and function. Corticosteroids, either taken alone or in combination with cytotoxic agents, are used to control certain manifestations of lupus (e.g., major organ involvement, myositis, severe blood abnormalities). Such therapy, when required in high and sustained doses, can sometimes result in bone damage and muscle weakness. However, such complications are seldom due to the effects of the medications alone, but are often due to a combination of factors. For example, lupus patients may be more susceptible to infections, including joint infections, because of the use of corticosteroids and immunosuppressive medications.
People with SLE who have been taking steroids for prolonged periods of time can develop ischemic necrosis of bone (also called aseptic necrosis or avascular necrosis). This condition is caused by altered blood flow to a portion of bone which results in the death of that area of bone. As the body repairs this area of dead bone, a weakening of the bone occurs and a portion of the bone surface may collapse. The hips, shoulders and knees are the areas that are most commonly affected. The initial symptom of ischemic necrosis is pain when the joints are being moved or bearing weight. As the condition progresses, pain is also felt when the person is at rest, especially at night time. Decreased range of motion in the joint may eventually follow. There is currently no medical treatment for this condition, but needle decompression of the bone surgically appears to retard the process. In some people with lupus, total joint replacement becomes necessary to solve the problem.
Prolonged treatment with corticosteroids may also put a patient at a higher risk for development of osteoporosis. Osteoporosis, a condition in which bone mass is decreased, means that the individual is at higher risk of bone fracture and compression of vertebrae in the spine. Osteoporosis is a common problem, especially for elderly and physically inactive individuals, whether or not they have lupus or have taken steroids. Women are at a much higher risk of developing osteoporosis than men because of their smaller bone mass. The use of calcium and Vitamin D, in addition to regular exercise, may help prevent osteoporosis. A regular, well-designed exercise program is important to help prevent muscle weakness in people with lupus myositis.
Let me know if this information was helpful of if you need anything further!
Peace and Blessings