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!