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My Lupus Experience With Kidney Disease and Chemotherapy

By Regan
 
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Regan is a Denver singer and musician. Please visit her at:
www.BeatLupus.com, and www.ReganMizuno.com

OK everybody, here it is; that which I have been slightly postponing, because it is still rather hard to talk about. Nonetheless, I want very much to say out loud what has happened.

I was diagnosed several years ago with a severe kidney disease caused by systemic lupus erythematosus. That kidney disease was called WHO Class IV diffuse proliferative glomerulonephritis (gn). At the time, the best available treatment for this type of kidney lupus was chemotherapy. I was told the alternative to taking chemo was potentially staving off kidney disease by using prednisone, but with my particular case and with this particular kind of kidney disease, using prednisone alone would eventually lead to the death of the kidneys.

I was in a life threatening situation. I also knew only too well the deadly results of misdiagnosed kidney disease caused by lupus. I did not want to end up a statistic. So, given a bad choice (chemo) and a worse choice (not doing the chemo), I went ahead with the treatment. I was told that the regimen (a ‘good-chance-of-success’ regimen that had already been determined based on years of research) was to be six months of monthly infusions, followed by two years of quarterly infusions. The total number of treatments, which extended only slightly longer than the planned 2.5 years (due to a couple of slightly delayed treatments because of minor infections I’d incurred), was 14.

I was administered Cytoxan (Cyclophosphamide), a chemo most commonly used for breast cancer. I was shocked to learn I’d be receiving it and was given the same concentration of the drug as were cancer patients. Even though I’d had the blessing of drawn-out treatments (the space between even the tightest treatments was a month), I felt extremely fatigued, nauseous and, looking back now, I realized I had also been depressed. A memory just struck me funny: my rheumatologist saying to my mother, before I was to start treatment, “She’s going to feel like crap the next couple of years. But she WILL be OK”. And I was.

Add a Comment9 Comments

EmpowHER Guest
Anonymous

My mom was diagnosed with lupus, about a year ago, the past two weeks have been hell though. It all started when the doctors told her that her blood was not good, so they took out a piece of her kidney to do a biotopsy last week and left her in the hospital for 3 days. After that she went in on tuesday of last week and she instructed to stay in he hospital for another 3 days because the where going to inject he with a small dose of what they use for chemo theraphy. We are from a low income family, and what i fear the most is that there is going to be a point where my mom will not be helped. They said that the treatmen should only take six months of her being treated with the small dose of chemo theraphy, but I am afraid of what to expect from these months soon to approach. I also applaud you for making people aware of lupus because i also think it is being taken for granted and with no consideration. My prayers go to all those families who also have a love one who is suffuing from the same condition.

November 28, 2011 - 11:06am
EmpowHER Guest
Anonymous

PLEASE READ THIS:
I have Lupus for the past 2 years and I friend who had it for 15 years and now is in perfect condition told me to read about the CANDIDA DIET, she started the diet 3 weeks ago and today is pain free and is not longer taking her medications (prednizona, plaquenil etc); I have started the diet 5 days ago and my life have changed, the inflamation is gone and the pain is almost gone. Please reseach about this, try it and you will see the diferent, I promise you that we are intoxicated with fongus and diferents bacterias inside our sistem, that is why the immune system is going crazy and attacking all our orgnans etc. Please read and you will see that the simptoms are just like Lupus, that is why, after reading so many books and information, I have to accept that Lupus is nothing else than an infeccion that we keep feeding with what we eat. PLEASE READ ABOUT THIS, CANDIDA DIET.

June 11, 2010 - 10:47am
Diane Porter

Regan,

What a wonderful post. Your story is both frightening and inspiring, and I know you will help those who are reading. You will also help open the eyes of those people who think lupus is not quite as critical a condition as others. Clearly, it needs more attention, more awareness and more research dollars. You go, girl!

October 12, 2009 - 9:38am
Regan (reply to Diane Porter)

Dear Diane,
Thank you so much for your positive words. That is exactly my goal, to raise awareness about lupus so that we can help find a cure. You're right - it is a serious disease, and one that has the potential to be cured. Research dollars can help, and I have had very positive experiences lobbying for patient and doctor education on Capitol Hill. Thank you so much for your support. I think we need to continue requesting increased funding for the NIH and for lupus research, as well as reaching out to others who can perhaps benefit from some of the things I have done to regain health and control of my life. Thank you, Diane! I'm so glad you're part of Empowher! Best regards, Regan

October 13, 2009 - 7:27pm
EmpowHER Guest
Anonymous

i too have lupus> i was told i had develop lupus in jan. 2005. at that time i was in my last year of high school. the worst thing that i had to face was that i had to stop playing sports. my lupus was so bad,that i had to start medication and under go treatment. oh the frist effects of predsione was the worst. i never had a good sleep after that. ihave been through all types of medicen . immuran,cellcept, celoxion, and now im on Rheumatrex,. i dont know whats next after this. my kidneys are so messed up that only %25 percent are working okay. my kideney disease just does wnat it wants. when i first found out i got lupus i was 18, and now im 24. its been a long jounery for me . but im going to be frighting this disease. sometimes i dont know what to do with my self. when i think im fine and and i try to do something productive, i always get flared up and wind up in the hospital with something. but hopefully we can find a cure for lupus. till then i will just keep praying... and have faith in god...

October 10, 2009 - 9:56pm
EmpowHER Guest
Anonymous

My son was diagnosed with Lupus Nephritis when he was 9. The treatment was doses of Cytoxan. We were told that his dose was lower than what they give cancer patients, but he still lost most of his hair and would be sick after the treatments (luckily, the doctors administer anti-nausea meds so he didn't get too sick). The treatments started off at every 4 weeks, and then got down to every 8 weeks. About a year after it had started, he was done, and has been taking Cellcept ever since. His kidneys are functioning at about 50%, and we have been told that he will most likely need a transplant in the future. It's been a long road (it will be 4 years in December since the diagnosis). My thoughts and prayers are with anyone having to deal with this disease.

July 12, 2009 - 5:57am
EmpowHER Guest
Anonymous (reply to Anonymous)

I am so sorry to hear about your son. I also have Lupus I was diagnosed very young(12) I am now 29. This past July 3rd was my 2nd year kidney transplant aniversary been throught everything possible can go through with lupus. My advice to you is start finding a relative or friend to be kidney donor makes it much easier in long run. My kidney can from best friend. If you can help it you do not want your son doing dialysis worst thing for someone to have to go through.

July 12, 2009 - 2:26pm
EmpowHER Guest
Anonymous

I was diagnosed with Lupus in October 2006, and this has been a jouney for me. I pray for all who have this painful disease. Keep your head up, be strong, pray and hopefully you'll see a change.

July 11, 2009 - 8:21pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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