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    Default Losing hair on cyclophosphamide???

    Has anyone else lost hair while on cyclophosphamide? I've been on it since the beginning of December 2014, 125mg daily and I'm finding that my hair is starting to come out slowly. I was told that this was a side effect, but unlikely to happen given the dose. I'm also on prednisone but have started to taper it. Currently at 20mg per day. Im not sure if it's a side effect of prednisone or not but its disturbing either way. Just curious others experiences. Yikes! Feeling disturbed!

    LovinLifesWife
    Last edited by LovinLife; 02-07-2015 at 01:00 PM.

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    My hair thinned when i was doing iv treatments of it. But it didnt all fall out. Im sorry

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    Yep, it happens. But in most cases it just thins quite a bit and then grows back once off the drug. People on MTX find that taking folic acid prevents this kind of hair loss. But I've never heard of it being recommended with CTX, so am assuming it doesn't work as well. I could be wrong. I think there are other reasons to take folic with MTX but I don't know what they are; it somehow combats some of the side effects, including hair loss. Maybe someone can elucidate. Would it help with hair loss from CTX, too?
    Anne, dx'ed April 2011

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    Hey Guys, I'm new to this site, but feel like I've just found a hundred best friends. Once I figure out a button to post and introduce myself, I will. I've lived (and died) with Wegener's for 8 and 1/2 years and this is the first time I've experienced people like myself. People who just...get it.

    My first time with Cyclophosphamide was in Aug 2007 and I lost most of my long, thick, wavy hair. Now I wear it in a cute, sassy short style and everyone loves it. It came back just as thick as ever!

    I'm just entering another flare and so look forward to the support of this amazing, caring, compassionate, and crazy smart group of people. Rock on!

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    Welcome, Lisa, and I hope I get this right: From here, go to top left corner of page and click Forum. There you will see a list of sub-forums or categories, including New Member Introductions. Click that and then you'll see a list of threads and you can click in upper left where it says Post New Thread. Then you will get the screen to write your post and you're ready to go!
    Anne, dx'ed April 2011

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    Thank you, I'm on my Samsung tablet so hopefully I'll figure it out. I just burst into tears with your response. I have an amazing support system, but a certain lonliness in that noone really understands my fears and litttle triumphs. That is no more.

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    Oh, Lisa, I can relate... I almost burst into tears when you told me that. This is truly an awesome forum, full of awesome people, and it is SO true that you will find kindred spirits here who understand like no one else can who doesn't have Wegs. Sounds like you have already read enough here to know how great this is. I have been here since my dx almost 4 years ago and it has been a lifesaver in more ways than one. I probably have more friends here than I do offline. And I have personally met 3 forum members. Well, I don't want to hijack the thread too much so I'll just wait to see your introductory thread.
    Last edited by annekat; 02-07-2015 at 06:45 PM.
    Anne, dx'ed April 2011

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    Yes, my hair did thin out but I came back after I finished with Cyco
    Last edited by Swb21188; 02-13-2015 at 04:34 PM.

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    Thank you, I think I did it!

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    Quote Originally Posted by LovinLife View Post
    Has anyone else lost hair while on cyclophosphamide? I've been on it since the beginning of December 2014, 125mg daily and I'm finding that my hair is starting to come out slowly. I was told that this was a side effect, but unlikely to happen given the dose. I'm also on prednisone but have started to taper it. Currently at 20mg per day. Im not sure if it's a side effect of prednisone or not but its disturbing either way. Just curious others experiences. Yikes! Feeling disturbed!

    LovinLifesWife
    YES, it's totally disturbing what our concoction of drugs does to us physically. Cyclo, thins your hair, gives you some awesome hues of colour in the first few weeks/months, and the pred, well let's not even go where pred takes you physically. The good news, yes there is good news, is that once you stop the cyclophosphamide, you'll probably have the best hair you've had all your life. It comes back with a vengeance. I had poker straight hair before all of this, nice long straight hair. So when it started falling out, it was a terrible feeling, the height of my pred face, and hair loss met at one point, it was a yucky time for self love, but now I have better hair than ever in my life. It came back so full, and with a nice wave, it's awesome. When I have to take care of those pesky grays now, I need two bottles of hair dye. So take some photos now, because this is a temporary thing, and as much as you hate the way things look, you'll love going back to see what a crazy ride you just have been on. I'm back to my old self, in appearance, but now with quite a bit more hair. And it grows fast after chemo. Just so you know.

    Take care and try not to let it bug you too much, easier said than done, and remember that this too shall pass. I promise.

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