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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

kbarber2007

Hey Rachel, I am sorry to hear about your diagnosis!
My daughter Emma was diagnosed with NS in Jan of 2008. She too was steriod dependant and was prescribed Cytoxan as a second course of treatment. The only side effect she experienced was her hair thinned quite a bit. She didn't go bald or anything but you could definately see her scalp by the time her 8 weeks of treatment was over. I hated her being on Prednisone and thought the side effects were MUCH worse! She has been in remission since the end of last year so we are thankful the Cytoxan seemed to do its job. I kept a weekly journal of Emma's Cytoxan journey on this website so feel free to read about her experience. I wish you luck and will keep you in my prayers for remission!

faith123

Hello! Thank you very much for your reply. Im so glad that Emma is doing great now. I will be praying that she stays in remission.

I read all your posts, and it shocked me to see how similar our stories are. I can relate to so much. It was very encouarging and touching to read your story. Im so happy for you and your family. You guys got through it, and i know me and my family will get through everything. It has been so hard, but i know it will be over one day, and i will be such a stronger person.

I actually saw the doctor today, and he started to ween me off the pred! i will be taking them every other day along with the Cytoxan every day. We will see the doc in 4 weeks, hopefully i will stay in remission, and we can decrease them more.

Im the type of person who worries way too much, and overthinks everything. So im really trying not to think about what COULD hapen. Because im sure you of all people would understand how unpredictable this disease is. Anything could change just like that. im just going to keep my faith in GOD. And whatever does happen, i know he will get me through.

Its great to talk to someone who has experienced this. I would love to stay in touch with you, and hear how Emma is doing. Not that this matters, but have all the side affects gone away yet? You mentioned she grew unwanted hair from the steriods, did that go away? Oh and what about the thinning of her hair? Did that get better when she was off the Cytoxan? I know this is all superficial things, but im just curious.

Sorry for all the questions and such a long reply. I just was so amazed by everything i read on your page. I look very forward to your reply, and best of luck with Emma.

Thanks,
Rachel

amanda_gee

This really struck me because I got diagnosed with MCD when I was 14. I had the worst freshman year of high school. I took amazingly high doses of prednisone for a year and I could never get off of it. I lost all my friends because no one wanted to be friends with a sick person. I eventually took cytoxan and things just got worse (at school but not health wise). I eventually was able to get off cytoxan and prednisone. Shortly after, I got sick again but I actually had FSGS. It took me a long time to get where I am now. I am 19, almost 20, and I am a completely normal and healthy college student. I have no symptoms of FSGS and am in almost complete remission. I take prograf now (and about 13 other meds), and have since I got sick. I think its a miracle drug

I lost almost all of my hair with the cytoxan. I also was very weak and felt ill a lot because of it. I was also steroid dependant (I am steroid resistant now) so I had to take the cytoxan. It was a hard choice but I wasnt willing to try to prednisone again and fail. But yes, it did work and I was able to get off both drugs. I did relapse and almost needed a transplant several months later, but I amazingly got better and never needed a transplant. The cytoxan is hard but I know you can do it. It is worth it

Never give up. If you have any questions, dont hesitate to ask. I was exactly like you not too long ago.

best wishes
amanda

kbarber2007

Hey Rachel, to answer your questions....yes, the unwanted hair growth went away as soon as she was on a lower dose of prednisone. I could tell a difference almost immediately. As far as the thinning of her hair from the Cytoxan it is slowly but surely growing back. She has an entire layer of new growth that is coming in under her long hair or what was left of it. She finished her round of cytoxan at the end of December 2008 and the new hair is probably about two to three inches long. It will take a while but it is worth it to me for her to be in remission!! I would rather have a bald child than a child that I have to pump full of meds that make her feel like crap!!!

As I said before, I will keep you and your family in my prayers! Hang in there. Like my daughters doctor told me....this condition is a marathon not a sprint. Keep your faith strong and your head held high and you will be just fine!

If you ever have questions or need someone to "complain to" feel free to contact me!! Believe me, I spent quite a bit of time venting on this site. It is really helpful to be among people who understand exactly what you are facing!!

faith123

That is great. Im glad things are contining to go well with Emma. Its good to hear the hair growth from pred goes away, and that the hair will grow back from Cytoxan. I have only been on them for 2 weeks, but i havent noticed any difference with my hair. I do have lots of thick hair, so im hoping it wont be too noticeable. Do you think if i am more careful with my hair, it wont fall out as much?

Thank you so much. It is so good to know that there is someone who has been through what i am going through that i can talk to. Thank you for keeping me in your prayers and i will be keeping you and your family in mine as well.

Best of luck,
Rachel

faith123

Amanda,
Im sorry to hear about everything you went through. It must have been very hard. Im very glad you are cured now. It must be great to finally be able to live normally again.

Im trying not worry about the possibilities of what could happen with taking Cytoxan. I have been on them for 2 weeks now, and havent noticed anything differntly. Only 10 more weeks! Haha. Just one question, did the hair grow back?

Thanks so very much for your time, and i wish you the best.

Rachel

kbarber2007

I didn't notice any thinning of Emma's hair until the last couple of weeks she was on cytoxan and it continued to fall out for a few week after she was off all the meds. I tried not to brush her hair a whole lot while it was falling out and try not to pull your hair back as much as possible. Other than that I don't think there is a whole lot you can do to prevent it. But like I said before it is a small price to pay for remission. Good luck with your treatment and keep me posted on your progress!

faith123

Ok. Thanks for the advice.

Today was a little rough. I have been doing good with the mood swings, but i had a huge outbreak today. I was home alone all day, which isnt good for me. I couldnt help it, i just had to scream and cry. I could hear my neighbors making fun of me. Its just so hard to control it. I feel horrible afterwards. I get so scared that im going to relaspe. I know its not good to worry, and i have to find ways to overcome it. DO you have any advice?

kbarber2007

Only to pray faithfully and often. I wholeheartedly believe God hears our prayers and will provide for our needs. I had a friend tell me right after Emma was diagnosed and all I wanted to do was cry all day that "when life pushes you to your knees you are in the perfect position to pray". That really struck home with me. Hang in there, it will get easier to deal with over time. Just know that God will never give you more than you can carry.

amanda_gee

the hair grows back immediatly! and really fast. Im Italian and I have really dark brown, thick, curly hair. When my hair grew back, it came back thicker and a little bit curlier. dont worry though!! it definitely grows back! and really fast.

best wishes
amanda

faith123

Thank you. My relationship with the Lord has definietly become stronger throughout this journey. I have learned so much, and I believe God must have big plans for me. I never thought i would be able to get through everything i have, and i know God will help me overcome anything that comes our way. He had enough faith in me that i would be strong enough to get through this, now i must have enough faith in Him that he WILL heal me.

faith123

Oh ok good!

So tell me about your experiences with prednisone. Was it great to finally get rid of the cheeks? Did you get really bad mood swings? What side affects did you deal with?

amanda_gee

I had every side effect in the book. I had bad mood swings, i was often in a terrible mood, always hungry, lost muscle tone, became weak, developed cataracts. That all went away as soon as we started to taper off the pred. It was amazing to finally be off of it when it did happen. I now only take it once every 2 days, its only 5mgs so there is absolutely no side effects. I take it even though i am steroid resistant. It has been said that prednisone helps prograf, which is why my drs have me take it. But i do not have any side effects from it at all because it is such a low dose. I look completely normal and I have for about 5 years.

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

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

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

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

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

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

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?

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