Inclusion Body Myositis

Question: Where do I find information on Inclusion Body Myositis in Spanish?

Answer: try to look around on this site http://www.google.com/ it's help

Question: Does anyone know about Inclusion Body Myositis (IBM)? Is there anybody out there who has, or knows someone who has, Inclusion body myositis? It is a muscle-wasting disease. I have looked it up on the internet and the prognosis isn't good. My sister's partner has recently been diagnosed with this in his legs and, already, has to be in a wheelchair when going to the shops.

Answer: Sorry if you have read this already. It is an underdiagnosed condition as it occurs mainly in the elderly with multiple comorbidities and is frequently misdiagnosed as polymyositis and wrongly treated with steroids. Treatment-resistant 'polymyositis' in the over 50s is often. Theories have proposed it as an autoimmune or viral-induced disorder. There is no effective treatment for the disease but high quality RCTs (randomised clinical trials)are few. Many therapies have been tried, unsuccessfully.Consensus is that steroids and conventional immunosuppressive therapies are not beneficial clinically. High-dose prednisolone paradoxically worsens strength whilst decreasing inflammation, possibly due to increased amyloid accumulation. Intravenous immunoglobulin is very expensive and ineffective.9 More specific immunotherapies require exploring. There tends to be very slow progression but those who develop symptoms at an older age tend to progress more rapidly. Progressive dysphagia is associated with a poorer prognosis and quality of life.w Recent trials have studied intravenous infusions of human immunoglobulin (IVIG) in IBM. Results have been contradictory, but provide no firm evidence of enduring benefit. Further trials continue, but currently the costs and side-effects do not justify routine treatment of IBM patients with IVIG. The best people to contact to see if there are any current trials and for information... Institute of Neurology, UCL National Hospital for Neurology & Neurosurgery Queen Square London WC1N 3BG Telephone +44 (0) 020 7837 3611 Fax +44 (0) 020 7278 5069

Question: how does 'inclusion body myositis' affect a persons lifestyle? Physically, socially and emotionally?

Answer: unfortunately it appears to be a progrssive and resistant disorder. This should have a progressive decline in ones physical life. Emotinal? yes depression is expected but firtunately treatable. Social life depends a lot on family support, without which social life can be fairly poor, good luck

Question: has anyone beat inclusion body myositis?

Answer: During the course of the illness, the patient's mobility is progressively restricted as it becomes hard for him or her to bend down, reach for things, walk quickly and so on. Many patients say they have balance problems and fall easily, as the muscles cannot compensate for an off-balanced posture. Because sIBM makes the leg muscles weak and unstable, patients are very vulnerable to serious injury from tripping or falling down. Although pain is not part of the "textbook" description, many patients report severe muscle pain, especially in the thighs. In up to 60 percent of cases, patients with sIBM develop weakness in the pharyngeal muscles, used in swallowing, causing choking (darlek, 2006). Patients with sIBM usually eventually need to resort to a cane or a walker and in most cases, a wheelchair eventually becomes a necessity. From a recent article: "The progressive course of s-IBM leads slowly to severe disability. Finger functions can become very impaired, such as for manipulating pens, keys, buttons, and zippers, pulling handles, and firmly grasping handshakes. Arising from a chair becomes difficult. Walking becomes more precarious. Sudden falls, sometimes resulting in major injury to the skull or other bones, can occur, even from walking on minimally-irregular ground or from other minor imbalances outside or in the home, due to weakness of quadriceps and gluteus muscles depriving the patient of automatic posture maintenance. A foot-drop can increase the likelihood of tripping. Dysphagia can occur, usually caused by upper esophageal constriction that often can be symptomatically improved, for several months to years, by bougie dilation per a GI or ENT physician. Respiratory muscle weakness can sometimes eventuate." There have been several attempts to use different medications (immunotherapies) to treat sIBM but in clinical trials, although some have produced minor short term improvements, none has been shown to be effective in the long term. These include the common immunotherapeutic agents, such as corticosteroids, azathioprine, methotrexate, cyclosporine, cyclophosphamide and total lymphoid irradiation. Why this is so is a mystery because based on the theory presented here these drugs should have a better effect in helping IBM. The response of dysphagia to intravenous immunoglobulin can be significant (Dalakas, 2006). No medication has yet been developed specifically for sIBM. New treatments called Biologic agents (Biologics) are being developed to treat immune disorders -- these are not drugs as we commonly understand them, made from chemicals, they are developed from proteins taken from the cell. One study by Dalakas is now under way is using an agent called Campath (alemtuzumab) to treat IBM