has anyone beat inclusion body myositis?

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