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ask: What is an effective treatment for systemic lupus?

By khambli1 July 27, 2009 - 11:26am
 
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My best friend has systemic lupus, it recently has been affecting her kidneys. Her doctor told her it is in stage four, is chemo really the best way to treat this?

 
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Susan Cody HERWriter Guide

Hi khambli1

Thank you for your question!

Most of us think of chemotherapy as exclusively for cancer patients, but it is, in fact, also used to treat lupus (and other conditions).

When you say Stage 4 lupus, what do you mean by that? Lupus is not usually classed this way, this is usually how cancer is classed. Stage 4 means the disease is terminal. Are your friend's kidney's at the end stage of failure? Is this what you mean by stage 4? Is she on dialysis?

From what I had read, chemo for lupus has a 40-50% rate of success which is quite good, considering. I assume the chemo is for her kidneys? Is she considering a transplant, also, do you know?

We wish her the very best - we have some lupus sufferers here on EmpowHer who may have more input for you.

Will you update us with more information about your friend? Please have a read of our Lupus page and pass along the website to her!
http://www.empowher.com/condition/lupus

July 27, 2009 - 12:59pm
khambli1

Thank you so much for your response! I have a little more info on her situation. She is not undergoing dialysis or considering transplant. Her kidneys are functioning at less than fifty percent. I am still not sure what stage four is in reference to, her doctor explained that five is the worst, and that is pretty much all the info she received on the stages.

July 27, 2009 - 1:15pm
Susan Cody HERWriter Guide

Thanks for the update!

I understand what you mean now - stage 4 kidney disease, not stage 4 lupus.

What the doctor is referring to is stage 5 kidney disease - this means dialysis or a transplant as one cannot survive stage 5 without one or the other.

Is your friend planning chemo now, or just thinking about it?

July 27, 2009 - 1:28pm
khambli1

She just had a biopsy today, and starts chemo later this week. I really appreciate all of your information, I have been extremely worried about her starting chemo, but now you have helped to put my mind at ease.

July 27, 2009 - 1:37pm
alysiak

I saw this and immediately wanted to respond that, no - chemo is NOT a normal treatment for lupus. Lupus is an autoimmune disease that affects certain internal organs and the joints, but not cancerous. "Typical" treatment for SLE is with corticosteroids to control the inflammation we suffer.

A patient could, however, develop other serious conditions, including kidney disease (this is what we lupus patients have to worry about) and lymphoma.

I also have lupus SLE, and have experienced issues with my kidneys. Fortunately, I've only had to undergo prescriptive treatment, not dialysis or worse.

I'm so sorry your friend is suffering this way and I hope the chemo goes well for her.

July 27, 2009 - 4:31pm
Knutson (reply to alysiak)

I find your comment extremely offensive. I was recently diagnosed with sle and have done weeks and weeks of research from top hospitals in the country. Chemo is a vary common treatment of lupus. In the research I have done I would estimate 70% or more of patents have been treated with chemo. If you are going to comment on life threatening diseases you should make sure you have correct information before you cause someone to make a decision that could endanger their life. I live in Delaware that does not have as advanced medical lupus treatments and have completed two rounds of chemo to treat my lupus complications. Yes chemo is mainly used for cancer, but any qualified chemo website will tell you it has other uses including very common treatment of lupus. The lupus foundation of America's website is one of many websites that explains the use of chemo to treat lupus and if you google "lupus and chemo" multiple top hospitals in the nation also have proven research of chemo treating lupus.So again if you are going to comment on someone's life please have correct facts.

April 28, 2012 - 9:49pm
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Anonymous

What she means by "stage four" is that her lupus has made her kidneys be in stage four of kidney disease.

August 11, 2009 - 11:20pm
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Anonymous

I was reading the above responses regarding lupus. I too have Lupus, SLE. I am 33 and was diagnosed @ 27 after having bilateral P.E 's in my left lung. I have had several problems physically with the illness and take alot of medications, including 15mg daily of warfin (a blood thinner). I have recently started cytoxic cemotherapy. I would love to be able ao advise on how it worked out, but I am still taking the treatments now. There are some side affects that I have been dealing with but I hope that in the long run it will all be worth it. I would love to chat with some other people who have SLE and have to deal with severe lupus. I feel alone at times, and feel people do not understand due to Lupus not being an open wound that you can see. If anyone should have any new information or have quetions that I may have the answer to ...please feel free to contact me via email.

February 21, 2010 - 2:48pm
Alison Beaver Guide (reply to Anonymous)

Hi,
Thanks for sharing your story, and we would be interested in hearing how your treatment regime works out!

If you are interested in connecting with other women who have SLE, you have many options:
1. EmpowHER's Lupus Connect. You can send a message to other EmpowHER members who have listed Lupus as a Condition that they are interested in.

2. Become a member of EmpowHER, to receive updates and information about Lupus, as well as have the ability to have continued discussion with other EmpowHER members, experts, guides and HerWriters (you are anonymous as a HER Guest).

3. Online support groups and/or local chapters: Lupus Foundation of America

I hope these resources help, and we hope you will keep in touch!

February 21, 2010 - 3:32pm
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Anonymous (reply to Anonymous)

My daughter is 32 and was diagnosed with Lupus 5 years ago. Nikki had 3 heart attacks, strokes, kidney failure, dialysis, NF, she died during her first of 7 surgerys, brain aneurysm etc etc,,,was in the ICU FOR ABOUT 3 MONTHS...she did cytoxan for a couple years and now is on Cellcept

I started an Album for her on facebook..you can add me if you like...Linda Nechetsky

August 31, 2010 - 12:42pm
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