I am a 41yo Male who was diagnosed with SLE August 95. Yes...a male, I know there are not many of us around (so I am told). I have read all of the posts, and I can honestly say tears ran down my cheeks. I have experienced many of the symptoms of lupus and side effects of the Rxs mentioned. Lupus is a nasty disease (another word comes to mind, but I am not sure how the webmaster of this site feels about the 1st amendment and I have to respect the other visitors). The most important thing I found that helps me is the mindset. No I am not selling Yoga or FungShway stuff either. Believe in yourself, and believe you can beat it. I was told that I would not be able to do a lot things in my life due the lupus, possible dialysis, and other injuries sustained by some of the Rx's I was taking. Until I woke up one morning after crying myself to sleep from one of the most vicious mood swings I ever had the night before, I literally woke up and screamed I WILL NOT GO DOWN!!! It hurt at first, and a lot I must say. It was, and still, is hard, but you have to be strong for yourself, your body, and most importantly for the others around you who care about you. I am not trying to say "I did it/doing it ha ha"...I am trying to say is "Don't let it beat you, talk about it, fight it, and swear at it. I too, was disgusted mentally and physically with myself on the steroids - I am still on them - going on three years now (down to 8mg daily - FINALLY!!!). The mood swings, rapid weight loss/gain, sleepless nights etc. I knew if I let it to continue to bother me I was going to throw myself off the highest mountain. I was going to fight FOR ME, not for the doctors, but for me. I started going for walks, working out, and eating even healthier than I already was. As crazy as it sounds I stopped drinking diet soda, because I read in a clinical report it sparked flares in certain autoimmune disorders. My GP told me to start taking Carlson’s Cod Liver oil to assist the immune system and my constipation from some of the drugs - still taking it, plus its loaded with vitamin D. I stopped getting myself stressed out over work, stupid people in life/around me, and the lupus. I am no longer dealing with joint pain, fevers, or fatigue. I am completely non-symptomatic. The only true remaining lupus issue I am dealing with now, and now back to normal, is my Lupus nephritis . Which by the way REALLY IS MIND A SCREW in itself - Feeling great, no symptoms, but urinating enough protein (>2000mg d/L daily) and foam to make a Guinness beer look like a Bud Lite. I am also recouping from having my shoulder rebuilt from all the damage the medrol has done (tore every tendon and muscle off my Left shoulder). Again, due to the medrol and its effects on tendons/muscles/and bone. My Orthopedic Surgeon said I would never play golf and or swim again….WRONG ANSWER!!! I am playing golf and swimming. I am fortunate that I am not photosensitive to the sun, but I do wear sun block.For me Cellcept is a joke. The kidney biopsy was nothing short of mid-evil with no concrete information to make a definitive decision, stage 3 or 4….is there a 3.5?. Plaquinel...well - who the hell knows, but I have been on it since 1995 for all I know it is a placebo pill. Zestril for the reducing the load on the kidneys, it may be helping I am not sure, My blood pressure can't lower than 115 over 70 cause I will pass out when I tie my shoes. We all know the effect of prednisone-great drug but the side effects can be left at the door. I was not responding well with prednisone, the doctor switched me Medrol (medrol does not need to be oxidized to be effective. Prednisone does.
I am not a doctor, not a preacher, not a coach; I am just a fellow lupoid sharing my trials, tribulations and successes. I must also point out that it may seem that I am coming across comical about this matter, but we all know laughter is a great healer, it releases endorphins and reduces stress. I just think that even on your worst day you always have to laugh, especially before going to bed. One last note...i am not sure if I am supposed to leave an email address here on this site, but I am going to anyway... kostad@iname.com . I would welcome any comments and private feedback.
I am a 41yo Male who was diagnosed with SLE August 95. Yes...a male, I know there are not many of us around (so I am told). I have read all of the posts, and I can honestly say tears ran down my cheeks. I have experienced many of the symptoms of lupus and side effects of the Rxs mentioned. Lupus is a nasty disease (another word comes to mind, but I am not sure how the webmaster of this site feels about the 1st amendment and I have to respect the other visitors). The most important thing I found that helps me is the mindset. No I am not selling Yoga or FungShway stuff either. Believe in yourself, and believe you can beat it. I was told that I would not be able to do a lot things in my life due the lupus, possible dialysis, and other injuries sustained by some of the Rx's I was taking. Until I woke up one morning after crying myself to sleep from one of the most vicious mood swings I ever had the night before, I literally woke up and screamed I WILL NOT GO DOWN!!! It hurt at first, and a lot I must say. It was, and still, is hard, but you have to be strong for yourself, your body, and most importantly for the others around you who care about you. I am not trying to say "I did it/doing it ha ha"...I am trying to say is "Don't let it beat you, talk about it, fight it, and swear at it. I too, was disgusted mentally and physically with myself on the steroids - I am still on them - going on three years now (down to 8mg daily - FINALLY!!!). The mood swings, rapid weight loss/gain, sleepless nights etc. I knew if I let it to continue to bother me I was going to throw myself off the highest mountain. I was going to fight FOR ME, not for the doctors, but for me. I started going for walks, working out, and eating even healthier than I already was. As crazy as it sounds I stopped drinking diet soda, because I read in a clinical report it sparked flares in certain autoimmune disorders. My GP told me to start taking Carlson’s Cod Liver oil to assist the immune system and my constipation from some of the drugs - still taking it, plus its loaded with vitamin D. I stopped getting myself stressed out over work, stupid people in life/around me, and the lupus. I am no longer dealing with joint pain, fevers, or fatigue. I am completely non-symptomatic. The only true remaining lupus issue I am dealing with now, and now back to normal, is my Lupus nephritis . Which by the way REALLY IS MIND A SCREW in itself - Feeling great, no symptoms, but urinating enough protein (>2000mg d/L daily) and foam to make a Guinness beer look like a Bud Lite. I am also recouping from having my shoulder rebuilt from all the damage the medrol has done (tore every tendon and muscle off my Left shoulder). Again, due to the medrol and its effects on tendons/muscles/and bone. My Orthopedic Surgeon said I would never play golf and or swim again….WRONG ANSWER!!! I am playing golf and swimming. I am fortunate that I am not photosensitive to the sun, but I do wear sun block.For me Cellcept is a joke. The kidney biopsy was nothing short of mid-evil with no concrete information to make a definitive decision, stage 3 or 4….is there a 3.5?. Plaquinel...well - who the hell knows, but I have been on it since 1995 for all I know it is a placebo pill. Zestril for the reducing the load on the kidneys, it may be helping I am not sure, My blood pressure can't lower than 115 over 70 cause I will pass out when I tie my shoes. We all know the effect of prednisone-great drug but the side effects can be left at the door. I was not responding well with prednisone, the doctor switched me Medrol (medrol does not need to be oxidized to be effective. Prednisone does.
I am not a doctor, not a preacher, not a coach; I am just a fellow lupoid sharing my trials, tribulations and successes. I must also point out that it may seem that I am coming across comical about this matter, but we all know laughter is a great healer, it releases endorphins and reduces stress. I just think that even on your worst day you always have to laugh, especially before going to bed. One last note...i am not sure if I am supposed to leave an email address here on this site, but I am going to anyway... kostad@iname.com . I would welcome any comments and private feedback.