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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1430
   Posted 7/16/2009 5:54 AM (GMT -6)   
Just wandering if anyone has any experience with Cytoxan? How did it affect you? Did you have a good out come? Just looking for some information! Thanks guys :-)

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/16/2009 5:09 PM (GMT -6)   
I took cytoxan treatments for lupus nephritis. I had massive proteinuria and it did help. Unfortunately, my immune system got so suppressed I developed a horrible staph infection which landed me in the hospital for a month. I was on alot of other very suppressive drugs in conjunction with the cytoxan. Having worked as a nurse prior, I was colonized with staph and therefore it was very easy for it to rear it's ugly head.

I know the studies coming back from cytoxan treatments for lupus nephritis/proteinuria are very encouraging; alot of people get completely symptom free. May I ask what you are being treated for? I wish you the best. Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1430
   Posted 7/16/2009 6:46 PM (GMT -6)   
Hey Judy! Thanks for the reply! I had acute kidney failure in January due to lupus and they have been treating me with cellcept and pred. since they have been bringing down the pred, more blood and protein are leaking and my kidney function is starting to go down again. Cellcept isnt doing anything for my joint problems either. I have been emailing my rhuemy and she is gonna talk to my nephrologist about starting it. He is hesitant because of my age but agrees something needs to change. I go on the 30th to find out if we are switching to Cytoxan. When you were on Cytoxan, how did it treat the joint pain associated with Lupus for you?
 
What treatment are you on for your kidneys now? Do they have you on lisinopril for the protien? Currently I am on 40 mg and its still leaking but it has helped greatly with my BP! If they have you on it, does it help for you? I know Bill says its the number 1 treatment...it helped to begin with for the protein or maybe it was the pred that helped!
 
What stage are you at? When I had the biopsy they said I was stage 3, pushing beginning stages of 4. I really don't know what that means. Is it true it is better to be at stage 5 than 3 or 4? If so, how?

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/16/2009 9:21 PM (GMT -6)   
Amy,
You know, i'm not sure what 'stage' i'm at now. I was end stage when I started dialysis, but my creatinine has improved tremendously. I know I still qualify for a transplant, but i've put off even considering it for now. If I go back on dialysis, i'll consider it again.


When I was on Cytoxan I did not have alot of joint pain, but I was on MASSIVE doses of prendisone at the same time. Like 120mg daily! I do not take lisonpril. I take toprol because I also have atrial fribrillation.

My doc has decided not to aggressively treat my kidneys anymore. I am taking cellcept and prednisone to try to keep lupus flares to a minimum. I was on Imuran, but had major bone marrow suppression, so I couldn't tolerate it anymore.

Please keep me informed on your situation. I will be praying for you. Judy

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/17/2009 7:37 AM (GMT -6)   
Aimsgirl16

I haven't heard of the med you posted. But I didn't know Lisiprol helps with protien. I guess that med helps us all around if you think about it. BP, protien and other factors. I forgot what they were I did so much research on it I muddled my brain..lol

I'm like you I have no clue what the rating system is..lol Us with kidney issues should learn these things. I will research it after my doctors appointment this morning and post it.

I hope you have a wonderful weekend.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1430
   Posted 7/17/2009 6:23 PM (GMT -6)   
Hey there! Well I heard back from my doctor and they both agree that it is time to do the Cytoxan! My nephrologist and rhuemy are working on getting me set up! I think I will be starting next week and They said we would start out at once a month and see how that does!

Judy, were you doing the injections once a month or more? I hope this is gonna help everything and maybe put lupus in remission???

Laurie-Hopefully your doctors apt went well :)!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/17/2009 8:55 PM (GMT -6)   
Hey Amy! I did start out on once monthly infusions. I went to a clinic to have them done. They gave me an iv of zofran and solumedrol then the Cytoxan. I hope and pray you go into remission and Never come out!!! Keep me in touch. Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1430
   Posted 7/18/2009 12:17 PM (GMT -6)   
Thank you Judy, i know they said lupron, to protect my ovaries, something like zofran, and a anitbitoitc and then the cytoxan should start. So we will see. I have already done the 1000mg of Solu-Medrol for 3 days in a row, so I am praying tht they won't do it again, but right now I am at the point to let them do anything just to get the pain to go away! I really appreciate your advice and encouragemt.

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/19/2009 11:10 AM (GMT -6)   
Wow so much is involved when you get to that point.  When I get there hopefully you all will still be around to walk me through it. smhair
 
I wish you all the strength to deal with all of this... yeah
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/19/2009 2:05 PM (GMT -6)   
Amy,
I also had the large iv doses of solumedrol but they also gave me a small dose prior to each treatment. I'm not sure why to be honest I was on massive amounts of by mouth prednisone at the time. Anyway...I am praying that all goes really well for you. Judy

melwegman
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/1/2012 10:51 PM (GMT -6)   
Cytoxan is a chemo drug not approved to lessen lupus affects. Doctors
presribe this drug because it does help with sustained steroid use.
Do not take this drug for any length of time. My mother died because of
this drug. She got Myliodisplastic Syndrome (MDS) which became Leukemia and died. This is the same illness that Robin Roberts has. Nora Ephron just died of the same disease. All had cancer and their cancer (chemo) drug hybred them into leukemia and died. It's the cure that kills.
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