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Cytoxan (cyclophosphamide) for MCD?

faith123
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Hey everyone,
Im Rachel and am 14 years old. In Febuary i was diagnosed with NS and it has been quite a difficult, stressful, scary journey since then. I have been on Prednisone for over five months now. I am so sorry if you too have to take this horrible drug. The side affects can get terrible. But luckily i have found ways to deal with them. Everytime we try decreasing the doses, i relaspe. We found that i am Steriod Dependent, so we are trying this new drug called Cytoxan (cyclophosphamide). Has anyone had any experience with it? How are the side effects? Please let me know your story and anything you know about this drug. Thank you so much.

With love,
Rachel

Explore topics in this discussion:

Cytoxan Prednisone Insomnia Cyclophosphamide

33 replies

JenBres

tmabriggs - My son is currently taking Cytoxan in the pill form. He's on his fourth week of treatment. He's very good at taking pills, so it wasn't an issue for us, however it was offered to have the medicine "compounded". I don't think this is done at a drug store/pharmacy, I believe it's through a separate facility. We would have had to travel 40 miles to get to the place that does the compounding...I don't have much information other than that, but I know it is possible to receive in liquid form, it just depends on the resources available in your area.

tmabriggs

Hi everyone--My daughter is steroid dependent and we are going to start Cytoxan this week and hopefully keep her in remission... We are gong to start the wean from the Predisilone too...it sounds like Mayra will be on both drugs for about 8 weeks. I was hoping to hear I could get her off the Predisilone sooner, but I guess we can't? Anyways, my other question is the doctor said we have to give this to her in a pill form and I am very worried about it. Mayra has never taken a pill...is there any other way to take the cytoxan? Also, I guess we will be getting bloodwork done every week. How did that go for you guys?
take care and God Bless.

TxSaphyre

lscaney,
I was spilling about 12G per day when I started my protocol 4.5 months ago. Within 1 month I was a 6G, at 2 months I was at 4G, 3 months I was at 2G, last month just barely over 1G. I have 6 weeks left to go. I have MN however, so I do not know how it works for other types.

I'm just praying now that I can hit remission in the 6 weeks that I have left . . . before I start the prednisone taper and keep my fingers crossed that it all "sticks". S/

lscaney

Hi. I'm hoping someone can please answer my question of how long it takes cytoxan to work. Has anyone seen it work toward the end of treatment? Pls. see my older post below (July 8) for our story. Really appreciate it! Thanks.

faith123

TxSaphyre,
Thanks for the post. I hope all goes well with your treatment. I know its kinda scary just having to wait and see how a new medication works for you.

that is good that your hair hasnt fallen out! You're right, everyone is different so we all just have to wait and see how we respond to the drugs.

Its been one month on cytoxan today for me. i have 2 more months, and then im off them. hopefully it works! i have been doing 60mg of steriods every other day for 2 weeks now, and i have been testing great! usually always trace or negative. i have never been able to make it to 40mg so hopefully when i see my neph in 2 weeks, he will decrease the doses to that,

Well, good luck with your health and thanks again!

Rachel

TxSaphyre

Rachel,
I take 80 MG of prednisone every other day and 125 MG of Cytoxan each day for the past 4 months with 2 months left to go before I start my prednisone taper.( I also take other drugs too but they aren't necessary to discuss in this context).

I cut my hair very very short so that if my hair fell out, it wouldn't be as noticeable. I have very dark and thick hair. Well, four months later, I have lost no hair and no thinning. Not sure what the next two months will bring but I haven't had my hair cut in two months and have just been letting it grow out from the really short short cut I got. I think each person is different so just keep the faith.

I have a bit of insomnia from the prednisone and my skin is pretty thin and every once in awhile my mood swings fast and furious but not too often. These are the only side effects from pred that I have but I'm sure that is due to the alt day dosing.

Cytoxan made me very sick to my stomach in the beginning so I began drinking ginger tea and that seemed to do the trick for me. I still drink it because if it ain't broke, I'm not fixing it :).

Best wishes in your treatment!

faith123

Amanada-
Thats really cool. Im sure your great, because you can really relate to the patients as well as help them. Good luck!

I kind of feel like all my friends have kind of just deserted me. I mean, i know i cant expect them to stop their lives and focus on me, but i feel forgotten. I missed ALOT of school (over half the year) from being so sick, so i guess i cant really blame them.

But i know that things will get better. Even though it feels like im going to be sick forever, it will be over one day. Im going to have the rest of my life to live. My life has changed in an uncountable amount of ways. Its been so hard, but I have learned a lot, and become a lot stronger. To think of everything i have been through. im very proud of myself. And look at you, im sure you felt like it would never end, but your doing great now.

Sorry for the long reply, i think i just needed to vent a little. Haha.

lscaney

Hi. My 5 yr. old son is now on Cytoxan after being on Prednisone for 6 months. He has MCD (biopsied) and the Pred. didn't work. He's 6 wks into the Cytoxan but no change in his protein levels--he's been 2-3+ for 2 years but no swelling or anything else so far. Have you found anyone else like this. Anyone know how long it takes for the Cytoxan to work?

amanda_gee

Well I decided to become a nurse when I was a senior in high school. Ive always wanted to do something with health (because of what I had to go through). My nurse was really inspirational to me. She cared about me as a person and not just for my disease. She really helped me get through and that's what I want to do for others. I want to be able to help people who were similar to me.

And congrats on the trace! thats amazing! I cant even imagine how excited and happy you are. Im really glad to hear it!

amanda

amanda_gee

The same thing happened to me. My best friend, who ive known since the 2nd grade, left me when I became ill. I found out that she really wasnt my friend because someone who cares about me wouldnt do that to me. I would encourage her to still go out and definitely meet new people. I found it helpful to have a hobby (i played guitar, made paintings, and drew a lot. Music helped too. Just be there for her and if she needs to talk, she should have someone to talk to. Its not going to be that way forever and it is hard at first, but it cant rain forever. Thats how I had to think of it. It was hard to accept at the time, but it came in due time.

At the same time, I got chron's disease when I was 9 so I had to deal with prednisone at an early age too. I know what your daughter is going through and just knowing that someone is there to listen and take care of you made me feel so much better

please dont hesitate to ask any questions
best wishes
amanda

faith123

Thats great. Yah, sleeping has been impossible. We are tapering now though, so i can finally get a decent amount of sleep! i was getting 2-4 hours for like 5 months! Haha, wow 12pm? I cant wait to do that again.

So your a nurse now? tell me more about that.

oh and good news! i tested today(on the albustix) , and it was trace! yah! i was a little worried because we are tappering, but it was good!

Shermil

Amanda Gee. My daughter was diagnosed with NS in December of 2008. She was in her first year in the middle school. She was very popular but after she started the Prednisone she too kept to herself. She has lost almost all of her friends. Some of those girls she has been friends with since she was in 1st grade. How did you deal with all of that. How can I help my daughter handle this better?

amanda_gee

It was odd seeing myself again but it felt amazing. I felt extremely poor about myself while on prednisone but once i started tapering off, I started to feel better about myself. The people in my life who were my true friends always treated me normal but as for the rest of the people, I guess they treated me normal as well. I didnt pay much attention to my peers after what I went through and didnt really care about them.

Sleeping was so hard. I used to always sleep in. On pred, I couldnt sleep past 8am, which always upset me. Now, I wake up at about 12pm lol, if I'm not working, taking care of people, or have class.

My skin was very sensitive because cytoxan is a chemo type of drug. Those types of drugs kill cells and the first to go are the cells that divide the fastest, (which is why you lose hair), and which is why skin becomes very sensitive. Im on prograf right now (not the only thing I'm on) but it makes my skin a little sensitive since it is an immunosuppressant drug. It's something I can deal with though and I dont usually notice it at all.

faith123

Ok thanks. Its good to know i will be back to how i used to be...eventually. haha. Was it weird to see yourself again? After being so used to the way you looked WITH pred? Did people start treating you normal again? I sometimes feel like people are treating me differently because of the way i look. It might just be in my head, i always overthink things.

Did your skin get really thin and irritated? and was sleeping hard?

amanda_gee

You have to make sure you are active but theres not much you can do to lose the side effects. they go away on their own, but being active will help as you taper off. everything will eventually go back to normal.

you arent asking stupid questions. feel free to ask whatever you would like. this is why i come to this website.

when you finally come off prednisone, you will look like you used to. it takes time but it will happen

faith123

Amanda-

Wow. That must have been pretty hard. It really shows you who your real friends are though. Yah i sometimes feel like people dont want to accept everything that is happening with me. I feel like they dont want to have to deal with it.

Did you have to do anything to make the side affects go away? or did they just go away on their own? Like, did you have to diet or something to make the puffy cheeks go away? did you have to build your muscle back? or does everything just naturally go back to the way you looked before on its own?

I know i am asking sooo many stupid questions, and if you dont want to answer them, thats totally fine. Im just curious, because i look back at pictures of how i looked before i got sick, and wonder if i will ever look like that again.

You are a very strong person and you have really inspired and encouraged me to stay strong and not give up. Thanks. Hope to hear from you soon.

Rachel

amanda_gee

I was on the steriods when I was 14, which was the summer before high school. I started chemo later in the 2nd semester of that freshman year. I came off of it right before the summer of sophomore year. I kept to myself so people really didnt notice me. I had no friends because they didnt want to be friends with someone who was sick. I overcame it though and I became stronger than ever.

faith123

Diane,
That is so great to hear. Im i am very happy for your son. I know how great it must be to have him off those steriods! He must be feeling like a whole new person.

Thank you very much and ill keep you and your son in my prayers. :)

Rachel

faith123

Thats so great to hear. Not that you had all the side affects, but that they all went away. My doctor has started to ween me off pred so now i only take 60 mg every other day. I am very excited for the side affects to start getting better! I dont know how much they will from just changing it to every other day, but they cant get worse! Everything has gone great with the Cytoxan so far. I have been trying to be extra careful with my hair. I have a really good feeling about everything, and today was a great day. I have definely beat pred today. No outbreak! So when you were on heavy doses of pred, how to people around you deal with your moodswings?

Im truely glad to hear you are doing good now, and thank you so much for your time.

Rachel

lamom

Faith123 --- I am thinking about you and praying for you!

My son has FSGS and is in remission. He was diagnosed at 11 and is now 13. We just this summer stopped ALL steriods. We are hopeful that he will stay in remission and ultimately grow. His height has negatively been affected by the steriods. I could care less - but size is important to boys.

Good luck and keep your faith strong. God is there for you always!

Diane

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