Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Remission after using Cytoxan

kbarber2007
0 Recommendations

Hey everyone, I have ANOTHER cytoxan related question. (can you tell I am a bit anal...ha..ha) My daughter Emma has one more week left of her 8 week cytoxan treatment and has been in remission since the beginning. She has always responded to the pred when she was on it but could never get fully weaned off. She has been officially weaned off pred for almost five weeks. My question is in regards to length of time in remission after the use of cytoxan. Can anyone share their experiences with how long them or their children stayed in remission after the use of this drug? Has anyone had spontaneous remission and never had another relapse? I know this is wishful thinking but I am hoping that Emma will be one of those small percentage of people!!! I know this condition presents differently for everyone (it seems like) but it would be nice to have some idea of how other people responded to this type of treatment. Thanks!!!

Explore topics in this discussion:

Pain Cytoxan Prednisone Bronchitis Edema

21 replies

LauraG

congrats on remission! We just finished 12 weeks and had a check up 2 weeks after finishing. Our doctor said the since we had such success with cytoxan that there were 2 things that could happen next. Either we woiuld fall into the group of never relapsing again or she would relapse again and hopefully respond better to the prednisone. If she relapses again and doesn't respond better to the prednisone, then we have to do a biopsy. Hopefully we will both fall into the first category!! And in your case only having done 8 weeks, my doctor would say that if your daughter relapsed, you could do another 4 weeks of cytoxan.
I will think positive thoughts for all of us!!!!

kbarber2007

That is awesome! Thanks for the update on your daughter! Contragts on her remission as well!!

Kyleesmom

Congrats on Emma's remission. Kylee goes to Children's Hospital of Philadelphia and they will NOT give a child cytoxan two times in their lifetime, just because it can cause other things to happen in the long run. So with that I would check with your doctor and what their practice does in that case. Happy Holidays!

LauraG

Just to clarify on my previous post regarding taking cytoxan again, our doctor would never give it to us again either, but she would give an additional 4 weeks to someone who only did and 8 week course. And of course that is a generalization as it would depend on the case. We did 12 weeks and can never do it again.
Happy Holidays to everyone!

kkrajny

Hello and Happy Holidays also to your family. I have been coming to site for a while However, it seems as though that Klohie has been healthy so I have not visited in a long time. My daughter also took Cytoxan and she was on it for 12 weeks. I apologize, I should give you a short version I guess. There has been so much it is hard to say where to start. However, Klohie my three year old was diagnosed at about a year and a half I would say. Since the Cytoxan she has had a few relapses, However only two of them required hospital stay. So I would have to say that it has helped her out. She is still on predisone though but every other day. There is hope and I have seen it definately. Klohie has been in remission since Sept. However this last time she was ill, her body fought on her own and we have not had a hospital stay since June. So every child is different and we will all get through this in baby steps.

amanda_gee

Ok I took it when I was 15. It worked wonders even though my life was miserable when I was on it. I was in remission the whole time during treatment. I had a 12 week treatment and I was in full remission for about 6 months after the treatment was done. After that I got the most sick ever. I was in the hospital in and out for 3 months..long story. I became steroid resistant after cytoxan and was eventually diagnosed with FSGS after 3 months. I am in remission currently and live an absolutely normal life

best wishes

evag

How did you go into complete remission, due to the cytoxan?

EvaG

evag

Amanda How did you get to remission now, cytoxan???

Eva G

amanda_gee

I went into complete remission using cytoxan. However I relapsed and found out I had FSGS. I am fully in remission now as well. It is due to using prograf and many other meds. Ask me any more questions if you need anything

kym1489

Amanda, how long u been in remission? and are u still under any medication now? Ur FSGS is under control?

amanda_gee

my fsgs is completely under control. i am on tons of medication. ive been in remission for about 2 years. However, i still swell with about one or 2 pounds of edema. this is because the glomerli are scarred. on the contrary, i think my body is healing itself because my nurse said i would b in this partial remission for the rest of my life, but it seems as though i am going into complete remission. life is wonderful

make sure you ask more questions if you have any.


amanda

britfun67

Not sure if Cytoxan has worked for my little one? My name is Lorrayne and I am currently in the Uk visiting with family but live in the USA. The love of my life is my daughter Molly who just turned 4 was diagnosed with NS almost 2 years ago (by me but that is another story). She is our only child and we adopted her from China when she was 11 months old. She is the only reason I get out of bed in the morning as I am sure you all feel about your kids. Anyway, she responded well to Pred and after the first bought had a month free then relapsed then it seemed she became steroid dependent. We just completed a 12 week course of Cytoxan and was able to get her off the Pred (currently 6 weeks) and finished the Cytoxan Dec 13th. Well Mon night she had a bit of a temprture so it seems she may have been fighting something & in the morning she tested at 30 (plus 1) the same Weds morn and this morning it was 100 (plus 2). I am devastated. What does this mean, what now? I called her Neph on Tues & he said that if she spills at 100 or more for 3 days then I have to start her back on the Pred. I am trying so hard to keep it together but am failing miserabley. She has been through so much in her little life already. I thought Cytoxan was supposed to buy them a long remission? Yes I am lucky she is not swollen or in pain but her poor little kidneys and all the crap I have to pump in her is just too much to take. What now? I am sorry I am just venting, I have no one to talk to since I am in the UK. We head back to USA on Sunday (then I will cry coz I will miss my family). I am just starting the new year all soppy. Like all of you I am so afraid of the long term, what could be. She had a biopsy last year and it was MCNS but I know that is not always accurate. I try to keep my faith in God but I am not like Job who took a beating and remained faithful, I unfortunatley crumble. Anyway, I would love some words of wisdom from you guys and to hear all your similar stories. thank you so much for reading.
Lorrayne

kkrajny

Wow, well I can say that I totally relate. Klohie has been in remission since September and then Tuesday night it started again. I tested her over the weekend and we were at trace and then again and we were trace and then Wednesday we test and we are at 4plus, so I can totally relate. We were on every other day predisone and back to every day again, luckily her readings are going down, however she has been on predisone for over 2 years almost and we also did the 12 weeks of cytoxan and that got us through 6 months of staying out of a hospital. All we can do is just pray and take the readings and pray some more. I can relate though also, just when you think we may reach remission, here comes a set back. However I have noticed that Klohie's body is much tougher then it was before when she was first diagnosed. So I pray that over time she will just outgrow it, or we wil find a better way to keep it from coming back.

worriedmomV

my son did the cytoxan after relapsing about twice a year for 4 years or so. years 2-6. he did 90 days of cyctoxan and stayed in remission for 1.5 years. one more year and he could have gotten his immunizations. Of course I'm disappointed b/c he is 8 now and he has to take 60mg a day. He got back down to trace in 7 days on prednisone which is good. I hope this helps. We are hoping he responds faster and as well to the prednisone but then again he has always done well on prednisone. Anyhow, I had a rough time of it. So, do the cytoxan and have faith, but your child can relapse again, no-one really told me the % of that happening, they just said kids do very well on this therapy, whatever that means! I thought my son had grown out of the disease. We had it 6 years now! Good luck!

Slade

Prior to Cytoxan, my son was very responsive to pred, but dependent. He took a 12 week course and was kept on a very low EOD maintenance dose (1.5 EOD) due to the allergy/cold season. He got a cold shortly after we stopped the Cytoxan, spilled a day or two and went back to negative and stayed that way for around 6 months. Then he got an infection and relapsed. For him, the Cytoxan appears to have made the relapses (unless this is a special case) much more manageable - he spilled for quite some time (we wanted to see if he would come back down on his own) and his levels were good. He never swelled and we've been able to taper so far (at 7MLs EOD today) - knock on wood. Slade

AndrewsDad

My son took a 10 week course of Cytoxan. He was supposed to do 12 weeks but came down with bronchitis at 10 weeks and since the neph said he wouldn't be able to fight off the bronchitis while on the Cytoxan, we stopped it. Shortly thereafter Andrew completely tapered off the pred and remained off all meds for 6 weeks before he relapsed. Since then things actually appear to have gotten worse as he has relapsed 4 additional times in about 6-7 months. The last two relapses put him in the hospital (over Thanksgiving and the day after X-mas) and the second of those occurred after only about 13 days of remission and while still on a nearly full dose of the pred. Here we are, at about two weeks after of remission, just started to taper to every other day, and he is again spilling - +2 Sunday, +1 Monday, and +3 this morning.

Unfortunately for Andrew, Cytoxan appears to have done nothing.

kbarber2007

That is unfortunate to hear about your little boy's situation! I'm sorry to hear he is relapsing again! It is frustrating when there is nothing we can do as parents to help fight this condition and it seems like the doctors are shooting in the dark to find out what works for each child. It seems like everyone responds a little differently. Was Andrew in remission the entire 10 weeks he was on Cytoxan? And did he respond to the Pred but couldn't get fully weaned off...is that why they chose to start him on Cytoxan? I am just curious if our kids have similar situations???

lscaney

Hi. Just wondering when your daughter stopped spilling protein while on the cytoxan? We're in week 6 and still at 2+ (where we've been for 2 years and 6 months on prednisone--just finished). Thanks!

kbarber2007

Emma was actually negative for protien when we started the cytoxan. She would stay negative as long as she was on the higher dose of pred but would relapse as soon as we weaned her. We were holding our breath for when we stopped giving her the pred and luckily she stayed in remission. I will keep your son in my prayers that the cytoxan will finally give him the freedom from pred. 2 years is a really long time to be on it continuously. Has he had horrible side effects from being on it so long?

lscaney

Thanks for replying and for your prayers. I will keep Emma in mine as well. He was on the Pred. for just 6 months. He went from 3+ to 1+ but then back up to 2-3+ and has stayed there. His moods were awful on the Pred. and he was up at 4:45 a.m. and didn't sleep well. Hated the way he looked too--all puffed up. His cheeks and belly are starting to go down and he's feeling a bit better, though I hear it takes a while. His behavior still seems off (almost like a rebound of the Pred. side effects?). Anyhow, just wondering how long cytoxan takes to work. Why was Emma put on it if her protein was negative?

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Events and resources

The NEPHCURE Walk -- Saving kidneys, saving lives.

Group leaders

You