My boyfriend was just diagnosed with lupus. I realize after all the research I have done, he is a very rare case being male and caucasian. I am trying to find all the info I can to help with this transition in his life. If anyone can help with these questions, I would be most appreciative! :d
1. I have started him on omega 3 fatty acid and flaxseed supplements, which I had approved by his doctor. Are there any other supplements anyone has tried that has helped with the symptoms?
2. He is currently on 40mg of prednisone a day, and he still has a really bad acne outbreak over his face and most of his body. Is there any topical treatment out there that has worked for anyone? Should this side effect subside as he continues to decrease his prednisone?
That is all for now, I am sure I will think of more questions as time goes on. Again, thank you for reading this and any help you can provide!
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replied November 7th, 2004
Hi, I am sorry to hear that he has been diagnosed. I also have lupus, and although I was first diagnosed two years ago, I have experience with prednisone because I actually had my first flare up when I was 10 years old and took it then and also two years ago. To answer your questions, I was told to take a calcium supplement while on prednisone, but that might be something important for females especially. You could have him talk to his doctor about that. I never had real bad acne break outs while on the medicine, but I did gain a lot of weight. Because prednisone is a steroid, it tends to increase your appetite and cause you to gain weight. Also, my cheeks got real puffy and I kind of looked like a chipmunk. But, after I was given plaquinal, a medication often given to people with lupus, and taken off of the prednisone, I lost the weight very quickly. I wish I could answer your questions a little bit better, but hopefully it helped you some. Best wishes and if you have any other questions, please ask and hopefully I can help to answer them Smile
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replied January 27th, 2005
Hey, I also have somewhat your situation, but the only different thing bout my situation is that im not in a relationship yet. He does not want me to be in his life because he has lupus, which he dint tell me directly, I kindda had to find out the reason why he wants to stay away from me. He was diagnosed with it 5yrs ago. The thing I wanna ask you is that does your boyfriend has fears about future? Coz my boo surely does, and I want spend my life with taking every step together and working things out together but he has decided not to get in any relationship, so he wont hurt anyone, but it would hurt me for the rest of my life, would make me feel as if I left him alone, no one with him to stand. I wanna be with him. I wanna know how confident are you with the situation you are going through. Im 20 and so is he.
Dont you think if we take things with positive attitide, things would work out? And its not that im not mentally prpared with it and im having trouble understanding him. I know I would have to sacrifice alot of stuff and I am willing to. But at the same time I dont wanna make him feel that I will have to sacrifise soo much for him, while some other guy would have given me sooo much and he cant give me anything. I only want him. Let me know if u can help.
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replied February 17th, 2005
Hi Sunshine
I am sorry it took a while for me to respond. I am actually not with my boyfriend anymore, even though I am still worried about him. I actually did not break up with him because of the lupus, but found out he had been cheating on me. This had happened before he was diagnosed with lupus, and he claims that he does not even remember it now because he was so messed up mentally. I think your boyfriend is tyring to protect you, and if he does not want to let you in then there is nothing he can do, but he should feel lucky! Lupus is different for everyone, so he may be able to handle it much better, and go on to live a very normal life. In my situation, he has not gotten much better and is still very weak which makes it hard for him to do anything. You will just have to be ready to possibly be the main financial provider of the family in case in cannot work. It is hard if you like going out because there may be times he is in too much main. I am not saying that is the way it will be, you just have to be prepared for anything!
I hope that helps, and good luck.
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replied February 21st, 2005
Hey jenn,
its very sad to know that your bf was cheating on you. But tell ya something we all humans do mistake, and there are only few people in this wolrd who forgive such mistakes. You know this very well your bf is going through a very difficult time and he needs someones support and that would be you if no one is with him at this stage...We all in out lifetime do sometihing or the other rong... If you support him now he would be yours forever and would always feel the guilt that he cheated on grl who was always with him and the thing which would make him keep binded to you would be that you forgave him. And I think flares and emotions play a major role in lupus. If he is mentally upset bout the breakin of this relationship then trust me he is gonna get worse and worse..Someone has to make him healthy mentally and physically. I dont know even know your whole situation...Im sorry if im getting into ur business...

Goodluck
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replied June 17th, 2005
In my experience, the only person who can make someone mentally well is themself. They can see therapists to help learn what tools they need to use in order to feel stable, but nobody can force someone else to be well. It comes from within. I wish both of these young men as much health as possible. Hang in there. I know it must be hard caring so much for someone with an illness like this. I constantly worry about what my boyfriend (of 5 years) must be going through. I haven't had a really major flare, but i'm always a little creaky and fatigued. At my worst, so far i've errupted in oral ulcers, experienced intense joint pain, and have become a total grouch.

I would never want to burden him with taking care of me, but I also know we share a very strong bond mentally and emotionally. He always reassures me that he stays because we understand each other, and that it doesn't trouble him at all. He's so strong. I know it hurts him when i'm not well, but I also know he feels proud to be able to offer emotional support when I need it. Really, it's the same with my family members as well. I don't want to become a difficult person to have around, but I do have health problems. So far, my case is mild and for that I am thankful. My doctor says that if I keep things under control, I should be able to maintain my current level of health. I work out regularly, take vitamins, make sure I get enough sleep (at least 9 hours), take my medication (plaquenil), and try not to let the small stuff freak me out. Hang in there.

--oak
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replied January 20th, 2011
Is anyone familiar with the Lupus Bible & Norton Protocol? I'm trying to take a different approach to fighting my lupus..considering alternative medicine along with conventional medicine. Any suggestions or information thanks
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