Question:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ George wrote: ‘I strongly recommend alternative sources. Not quacks and
sales gimmicks but good proven alternatives. There are a zillion kooks & crooks out there but there are also some winners. I know, I’ve found some and am always looking for more. Good luck in your quest. George ‘ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ George: would you please post information on alternative sources for lupus help. Thank you
Response:
Hello, I am a 25-year-old asian, and I’ve gone through some hell recently because of diagnosed SLE. Most of my symptoms were joint pain or muscular stiffness, but since I’ve been taking medications (prednisone), I’ve had to be hospitalized twice and got my internal organs damaged (heart, kidneys, liver, etc.). I don’t know if it’s the high dosage of cortisone or the disease itself that is destroying my body, but in any case, I am taking more and more different medications to counter side effects of the others. This seems like a vicious cycle to me. I used to study classical piano (Master’s Degree) and compete actively (2nd in Canada for 23-year-old and under), work as a computer security consultant, and cycle like crazy. Needless to say, now my life seems to have come to an end, since I’m unable to do those things anymore. I am still hoping to get better, my internal organs are "normal" according to the doctors, and we are lowering the Prednisone dosage. But my neurologist insists that I continue taking Tegretol for a couple of years because of the convulsions that I had. I just can’t imagine that. Does any of you have any clues about alternative therapies for SLE, or doctors who are willing to try, at least? I am willing to do anything to get better. I am now walking with a walker, but I intend to get on my bike again next summer! Thanks in advance, Alex Vovan
Response:
I confess to knowing little about lupus, but my impression is that most patients are treated with combinations of prednisone and other medications. If your condition doesn’t improve, it might be worth asking the physician about plaquinal (sp??) or methotrexate or other immunosuppressives. Those with lupus experience can tell you with more experience and authority than I can.
Response:
- Hide quoted text — Show quoted text -Alexandre Vovan wrote: > Hello, > I am a 25-year-old asian, and I’ve gone through some hell recently because > of diagnosed SLE. Most of my symptoms were joint pain or muscular stiffness, > but since I’ve been taking medications (prednisone), I’ve had to be > hospitalized twice and got my internal organs damaged (heart, kidneys, > liver, etc.). I don’t know if it’s the high dosage of cortisone or the > disease itself that is destroying my body, but in any case, I am taking more > and more different medications to counter side effects of the others. This > seems like a vicious cycle to me. > I used to study classical piano (Master’s Degree) and compete actively (2nd > in Canada for 23-year-old and under), work as a computer security > consultant, and cycle like crazy. Needless to say, now my life seems to have > come to an end, since I’m unable to do those things anymore. I am still > hoping to get better, my internal organs are "normal" according to the > doctors, and we are lowering the Prednisone dosage. But my neurologist > insists that I continue taking Tegretol for a couple of years because of the > convulsions that I had. I just can’t imagine that. > Does any of you have any clues about alternative therapies for SLE, or > doctors who are willing to try, at least? I am willing to do anything to get > better. I am now walking with a walker, but I intend to get on my bike again > next summer! > Thanks in advance, > Alex Vovan
Alex, I strongly recommend alternative sources. Not quacks and sales gimmicks but good proven alternatives. There are a zillion kooks & crooks out there but there are also some winners. I know, I’ve found some and am always looking for more. Good luck in your quest. George
If you like this post and would like to receive updates from this blog, please subscribe our feed.