Question:
My sister has just been diagnosed with Systemic Lupus Erythematosus, in her kidney and liver. I am very concerned, and I would like to know two things: How exactely will this affect her lifestyle and life expectancy? The other thing is this, does anybody know what the best treatment is? She will go on cortisone. Does anyone know anything about promising future treatments? Thanks.
Response:
Hello Sebastian, I am sorry to hear about your sister and I understand your concerns for her. I hope we can be of help. There are other drugs that can be used in conjunction with prednisone. These drugs also help suppress the immune system and help to keep the dosage of pred to a minimum. Imuran and plaquinil are examples. There are others here who have some good website for you to get more information. It is sometimes quiet over the weekend on the news group, so until you get other replies, you may want to try going to www.lupus.org. They have information on drugs, kidney problems, and all aspects of the disease. Regards, BJ "Sebastian" <s…@webonline.co.za> wrote in message
news:6b52a1f2.0111171310.4a2b28d2@posting.google.com… – Hide quoted text — Show quoted text -> My sister has just been diagnosed with Systemic Lupus Erythematosus, > in her kidney and liver. I am very concerned, and I would like to know > two things: > How exactely will this affect her lifestyle and life expectancy? The > other thing is this, does anybody know what the best treatment is? She > will go on cortisone. Does anyone know anything about promising future > treatments? Thanks.
Response:
Hello Sebastian, Here’s some about Lupus and liver (and much more) http://www.pbcers.org/livdis2.htm http://www.cerebel.com/lupus/overview.html http://www.hamline.edu/lupus/articles/symptoms_of_lupus.html http://www.lupus.org/lupusfaq.html http://internet-plaza.net/lupus/topics/laboratory.html Also here’s some prior threads about "life expectancy". http://groups.google.com/groups?as_epq=life%20expectancy&as_ugroup=al… Hope that you’ll find all of this informative and encouraging. HTH J – Hide quoted text — Show quoted text -Sebastian wrote: > My sister has just been diagnosed with Systemic Lupus Erythematosus, > in her kidney and liver. I am very concerned, and I would like to know > two things: > How exactely will this affect her lifestyle and life expectancy? The > other thing is this, does anybody know what the best treatment is? She > will go on cortisone. Does anyone know anything about promising future > treatments? Thanks.
Response:
s…@webonline.co.za (Sebastian) wrote in news:6b52a1f2.0111171310.4a2b28d2@posting.google.com: > My sister has just been diagnosed with Systemic Lupus > Erythematosus, in her kidney and liver. I am very concerned, and I > would like to know two things: > How exactely will this affect her lifestyle and life expectancy? > The other thing is this, does anybody know what the best treatment > is? She will go on cortisone. Does anyone know anything about > promising future treatments? Thanks.
My wife’s first symptoms occurred in 1978 and she has been on prednisone since. A dx (diagnosis) was made almost 19 years ago when our second child was on the way. At this time she had kidney involvement. Except for a few minor flares we have led a normal life. A few adjustments were required: Outdoor activities in daytime have been curtailed, cycling, days at the beach, and such. Hiking has moved to forested areas. Susnscreen is applied daily. Adequate rest is MANDATORY, but not always easy to get. Relationships with Dr.s have been much closer than I would have ever expected. Linda and I met on the dance floor about the time of her first symptoms and have managed to keep that going one to three evenings a week through most of this. A year and a half ago, Linda decided to get her teaching credential and went back to school. She did very well but in focusing entirely on this she forgot to pay attention to her body and had a major flare up. Her kidney function is now down to 16% or thereabouts. This did stop the attmept for a credentail but Linda does substitute teach in the local high schools part time. Support from family and friends makes a big difference. Glad to see you here?? Well, under the circumstances, anyway. Note: This is also my introductory post here. Have been lurking for about three weeks now. T-bone
Response:
T-bone <tluder…@netscape.net> wrote in message
news:Xns915D61C10FF18tandelshomecom@65.12.86.98… – Hide quoted text — Show quoted text -> s…@webonline.co.za (Sebastian) wrote in > news:6b52a1f2.0111171310.4a2b28d2@posting.google.com: > > My sister has just been diagnosed with Systemic Lupus > > Erythematosus, in her kidney and liver. I am very concerned, and I > > would like to know two things: > > How exactely will this affect her lifestyle and life expectancy? > > The other thing is this, does anybody know what the best treatment > > is? She will go on cortisone. Does anyone know anything about > > promising future treatments? Thanks. > My wife’s first symptoms occurred in 1978 and she has been on > prednisone since. A dx (diagnosis) was made almost 19 years ago when > our second child was on the way. At this time she had kidney > involvement. > Except for a few minor flares we have led a normal life. A few > adjustments were required: > Outdoor activities in daytime have been curtailed, cycling, days at the > beach, and such. Hiking has moved to forested areas. > Susnscreen is applied daily. > Adequate rest is MANDATORY, but not always easy to get. > Relationships with Dr.s have been much closer than I would have ever > expected. > Linda and I met on the dance floor about the time of her first symptoms > and have managed to keep that going one to three evenings a week > through most of this. > A year and a half ago, Linda decided to get her teaching credential and > went back to school. She did very well but in focusing entirely on this > she forgot to pay attention to her body and had a major flare up. Her > kidney function is now down to 16% or thereabouts. This did stop the > attmept for a credentail but Linda does substitute teach in the local > high schools part time. > Support from family and friends makes a big difference. Glad to see you > here?? Well, under the circumstances, anyway. > Note: This is also my introductory post here. Have been lurking for > about three weeks now. > T-bone
Hello, T-bone and Linda: Dancing is "gentle exercise" and does you both good. Please join in, we all know from where you speak! Judith in sunny SoCal
Response:
Hi T-bone, Thank you for de-lurking, and welcome. I want to say that your story is a good example of what I was trying to say in my post titled, I wonder if? My concern was that people, new to the group, may become more fearful because they only see problems discussed here. I am not saying that we shouldn’t be doing that. I just thought that it is important to hear that people with lupus can, with treatment, live a good life. That life requires changes and adjustments, but it can be a good and rewarding one. You are right, the support and understanding of family and friends is crucial. Especially during the bad times. Your story is proof that life with lupus can and does go on. Regards, BJ "T-bone" <tluder…@netscape.net> wrote in message
news:Xns915D61C10FF18tandelshomecom@65.12.86.98… – Hide quoted text — Show quoted text -> s…@webonline.co.za (Sebastian) wrote in > news:6b52a1f2.0111171310.4a2b28d2@posting.google.com: > > My sister has just been diagnosed with Systemic Lupus > > Erythematosus, in her kidney and liver. I am very concerned, and I > > would like to know two things: > > How exactely will this affect her lifestyle and life expectancy? > > The other thing is this, does anybody know what the best treatment > > is? She will go on cortisone. Does anyone know anything about > > promising future treatments? Thanks. > My wife’s first symptoms occurred in 1978 and she has been on > prednisone since. A dx (diagnosis) was made almost 19 years ago when > our second child was on the way. At this time she had kidney > involvement. > Except for a few minor flares we have led a normal life. A few > adjustments were required: > Outdoor activities in daytime have been curtailed, cycling, days at the > beach, and such. Hiking has moved to forested areas. > Susnscreen is applied daily. > Adequate rest is MANDATORY, but not always easy to get. > Relationships with Dr.s have been much closer than I would have ever > expected. > Linda and I met on the dance floor about the time of her first symptoms > and have managed to keep that going one to three evenings a week > through most of this. > A year and a half ago, Linda decided to get her teaching credential and > went back to school. She did very well but in focusing entirely on this > she forgot to pay attention to her body and had a major flare up. Her > kidney function is now down to 16% or thereabouts. This did stop the > attmept for a credentail but Linda does substitute teach in the local > high schools part time. > Support from family and friends makes a big difference. Glad to see you > here?? Well, under the circumstances, anyway. > Note: This is also my introductory post here. Have been lurking for > about three weeks now. > T-bone
Response:
Welcome T-Bone and Linda, This is a fantastic group. Worth the price of admission, if you know what I mean. Wes On Sun, 18 Nov 2001 17:36:27 GMT, "T-bone" <tluder…@netscape.net> wrote: – Hide quoted text — Show quoted text ->s…@webonline.co.za (Sebastian) wrote in >news:6b52a1f2.0111171310.4a2b28d2@posting.google.com: >> My sister has just been diagnosed with Systemic Lupus >> Erythematosus, in her kidney and liver. I am very concerned, and I >> would like to know two things: >> How exactely will this affect her lifestyle and life expectancy? >> The other thing is this, does anybody know what the best treatment >> is? She will go on cortisone. Does anyone know anything about >> promising future treatments? Thanks. >My wife’s first symptoms occurred in 1978 and she has been on >prednisone since. A dx (diagnosis) was made almost 19 years ago when >our second child was on the way. At this time she had kidney >involvement. >Except for a few minor flares we have led a normal life. A few >adjustments were required: >Outdoor activities in daytime have been curtailed, cycling, days at the >beach, and such. Hiking has moved to forested areas. >Susnscreen is applied daily. >Adequate rest is MANDATORY, but not always easy to get. >Relationships with Dr.s have been much closer than I would have ever >expected. >Linda and I met on the dance floor about the time of her first symptoms >and have managed to keep that going one to three evenings a week >through most of this. >A year and a half ago, Linda decided to get her teaching credential and >went back to school. She did very well but in focusing entirely on this >she forgot to pay attention to her body and had a major flare up. Her >kidney function is now down to 16% or thereabouts. This did stop the >attmept for a credentail but Linda does substitute teach in the local >high schools part time. >Support from family and friends makes a big difference. Glad to see you >here?? Well, under the circumstances, anyway. >Note: This is also my introductory post here. Have been lurking for >about three weeks now. >T-bone
Response:
Welcome Sebastian, There are a lot of knowledgeable people here. Regretfully, I am not one of them. But I will be glad to help any time I can. Wes On 17 Nov 2001 13:10:54 -0800, s…@webonline.co.za (Sebastian) wrote: – Hide quoted text — Show quoted text ->My sister has just been diagnosed with Systemic Lupus Erythematosus, >in her kidney and liver. I am very concerned, and I would like to know >two things: >How exactely will this affect her lifestyle and life expectancy? The >other thing is this, does anybody know what the best treatment is? She >will go on cortisone. Does anyone know anything about promising future >treatments? Thanks.
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