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Old 02-12-2011, 01:05 PM   #1
Join Date: Feb 2011
Location: Long Beach, ca
Posts: 1
LivesThruMe HB User

A few years ago my mom was diagnosed with Dermatomyositis. She had all the symptoms... rash, severe muscle weakness in her limbs, esophagus and lungs. She was put on high level of prednisone and later given immunoglobulin treatments. Unfortunately the high levels of steroids she was one made her bones very brittle. The weakness in her muscles caused her to to lose balance and fall which resulted in several spinal fractures which never did heal in spite of numerous surgeries to to keep the vertebrae from collapsing. On one hand she needed the steroids to keep her muscles functioning enough to breathe and on the other hand they were destroying her bones. She was perfectly healthy before this diagnosis and within about 2 years of suffering these symptoms, she died died from what started out as pneumonia complications and resulted in lung failure. It's been 5 years now since she passed and I guess I'm just wondering if any progress has been made since then? I read these message boards and everyone seems to be having success with overcoming this illness. Why was she the exception... is something I think about on a daily basis but will never have an answer. To see such a strong woman deteriorate soo quickly makes no sense

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Old 04-04-2011, 06:30 AM   #2
Join Date: Apr 2011
Location: Costa Mesa, CA
Posts: 1
HisGlue HB User
Unhappy Re: Dermatomyositis

My boyfriend has been battling with Dermatomyositis for going on 7 years now. He treated the first bout with methotrexate oral and he said he was fine for a few years. then he began feeling ill again and was told he had SLE as well as Dermatomyositis. He was a professional athlete and a successful strong business man. They have determined its lupus cerebritis and he has been on tons of meds for his mental issues from the damage done to his brain and IVIG regularly. The problems that hes currently experiencing started about 6 or 8 months ago with edema in his lower extremities and he complains of numbness in his lower body and has a difficult time moving lately. The edema has caused blood clots obviously and they seem to be a frequent concern for him with pain in his chest and fluid in his lugs and varying states of mental clarity that i attribute to his lack of oxygen to his extremely large body (almost 7' tall) and brain. So with this flare of the diseases they tried iv methotrexate however the Dermatomyositis flared up to a dangerous life threatening amount and he was hospitalized for about 8 days being intubated and sedated much of the time. The lab results show the methotrexate had absolutely no effect on his diseases and they are putting him on a tougher chemo I guess. He doesn't tell me much especially since the last hospitalization. He has only danced around the real emergency that he narrowly averted the lest time he went to the ER. I think it had to do with his heart. He is constantly not feeling well, and very pessimistic about his future and I would like to know what I can do to help. His diet sucks but he will not change, he barely even acknowledges the illnesses because his ego and image in the public eye. I just want to hear any and all suggestions from ppl who either have this or have cared for a loved one or patient who is dealing with this. THE PRIMARY CONCERN IS THE SWELLING IN THE THROAT AND HIS LUNGS THAT FILL WITH FLUID AND THE POSSIBLE TREATMENTS OR REMEDIES ETC I CAN HAVE HIM TRY. thanks for the advice...I know what you experience with this disease can be trying of your patience and test your resilience, god bless! Keep fighting!

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