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Regular Member

Date Joined Nov 2010
Total Posts : 41
   Posted 3/24/2011 9:43 PM (GMT -7)   
so while Im waiting for the new lupus medication my doctor has just advised me that it might take some time and this flare that im in is getting out of hand. No treatment is helping & wants to try cytoxan.. never tried it before and I am very nervous...  I know the side effects are pretty bad but to be honest is it going to help me?  is it worth it? well right now my lupus is attacking my heart & lungs so I dont really have alot of options. just more scared!!
Lupus, RA,Sjorgrens,antiphospholipid syndrome,Pericarditis,Migranes
AVR & Tricuspid Repair 2008

Imuran,Coumadin,Topamax,colchincine,Wellbutrin, Prednisone

Forum Moderator

Date Joined Jun 2008
Total Posts : 1470
   Posted 3/25/2011 3:53 AM (GMT -7)   
Hey there!First off...have you tried Cellcept or Imuran? I am not seeing that on your med list and can't remember if you have said anything about them in the past. Cytoxan is generally used if you are found in kidney failure or severe brain involvement. or if you do not respond to other treatments such as plaquenil, Imuran, Cellcept, Methotrexate.

I did Cytoxan for 8 months and it is deffinatly worth it. Many people might see this as odd but at the time, I felt the best I had felt while Cytoxan. The First week after it is quite tiring but is worth it. Especially if your lupus is attking your heart and lungs, it will hopefully be what they need to calm down again, if you are not responding to the safer lupus meds.

They put me on Lupron, to help save my ovaries. It put me in medical menapause and I did have symptoms of menaupause. Night Sweats (bed drenched), turning red all over in a matter of seconds, moodiness) After the first month, it generally gets better. I am 23 now but at the time they thought I would change my mind and want to have kids so they were keeping my options open.

I would go in once a month to the outpaitent cancer center at my hospital. They gave me about an hour of fluids, then 30 minutes of Mesna (drug to help protect bladder) and then 30 minutes of Zofran. Then I got the hour of Cytoxan followed by another 30 minutes of mesna and then an hour to two hours for fluids. So when you go, plan to be there all day.(at least in my case) Especially by the time they take your blood work and get it sent to the lab. Before they give the Cytoxan, they have to have a test come back showing you are not pregnant...No matter how much I told them it was not possible, they still had to test me!

Side effects for me where mild. I did have to do extra fluids and mesna because immediatly after the cytoxan, the next trip to the bathroom showed pink/red urine which meant it was messing with my bladder. If you do decide to do Cytoxan, pay close attention to your urine, allthough I am sure if you p a redish color you will notice right away! Let your nurse know who is giving you the cytoxan so they can contact your doctor. Cytoxan is known for bladder cancer so please dont overlook this symptom. I did lose my hair but had fun with wigs and hats. My WBC dropped freakishly low( the lowest was at .8) and I was put on house arrest by my doc. Was not allowed to go anywhere, they also started me on Bactrim to help prevent infections. After a few months i started losing my color and turned a gray/ashy color but felt better than I had felt in about a year because the pain was gone for 2 weeks outta the month. I was also exhuasted. If you are working full time, I would considered dropping down your hours to at least 6 hrs a day so you can get the rest you need! I thought I was able to work through it all and almost made it the 8th month of treamtent but just couldnt. I had to do short term disability and caught up on some much needed rest!!!

Please let me know what specific questions you might have...Those are just a few of the things I could think of this early in the morning!!!!
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril,Norvasc, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Regular Member

Date Joined Nov 2010
Total Posts : 41
   Posted 3/25/2011 2:59 PM (GMT -7)   
oh thank you so much for sharing your experience with me... it helps so much... well I have been on imuran,plaquenil, prednesone, melotrexate and  it been 6 years now and it seems like my lupus is getting worse over the years. I had a hysterectomy feb 2009 & Heart Surgery Aug 2008. I also tried rituxan it worked but I had a bad reaction and was told I can not take it again.. Humira, I asked about trying that but I was told that it was on for my RA and would flare my lupus.. with a very confused look on my face I accepted that.. I did just get off the phone with my doctor, he has decided that the new drug, Benlysta is was we are are going to try first, unless he changes his mind.. he does that often.. lol if this drug doesnt work then the plan is back to cytoxan again.....   

Lupus, RA,Sjorgrens,antiphospholipid syndrome,Pericarditis,Migranes
AVR & Tricuspid Repair 2008

Imuran,Coumadin,Topamax,colchincine,Wellbutrin, Prednisone

New Member

Date Joined Nov 2008
Total Posts : 1
   Posted 5/9/2011 6:51 AM (GMT -7)   
Hi Ladies,
This is my first post on this site. I am going trough my second time of Cytoxan infusion. The fist was for 6 months in 2006, 850 mg 1 times a month. No zolfran infusion because it was not cancer.....that made it miserable. It worked though the Lupus was calm for 4 years. I also changed the way I ate after that. No sugar and tons of fruits and vegetables and supplements. It was when I had to go off the Imuran because my WBC tanked and I kept getting infection after infection. Same scenario this time except I am older now and its harder to bounce back (I am 54). The dose is lower this time, 750 mg and my Dr fought the insurance to get the zolfran infusion. What a difference! The third day after the treatment, for some reason is the worst! I feel amazing the 2 weeks before the next. Then WAM......its time for another. My doctors are pushing me to do retirement disability because of the "germ" factor. I work with a lot of college students every day and when someone sneezes I get sick. So frustrating for us. I have not had any problems with the bladder except for a occasional UTI. This is a frustrating and sneaky disease. Its hard on my family but they are always there for me no matter what. Even when I am coming off the prednisone. My 16 year old twins call it "prednisone Tourettes" As long as your Dr checks your blood and urine it seems somewhat safe. I try not to read all the "side effects" stuff because then I would be afraid to proceed. Bottom line is that it worked once and I am optimistic it will work again.
Everyone on this site is so BRAVE! Once I quite saying why me and starting saying "why not me" my attitude changed immensely. I was diagnosed in 1989 and back then they just gave us plaquinil, aspirin and prednisone when needed. One doctor actually gave me 10 years to live and here I am!
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