Losing hair on cyclophosphamide???

[LovinLife]

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

[im so blessed]

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

[annekat]

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?

[LisaMac]

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!

[annekat]

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!

[LisaMac]

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.

[annekat]

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.

[LisaMac]

Thank you, I think I did it!

[Swb21188]

Yes, my hair did thin out but I came back after I finished with Cyco

[marta]

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.

[LisaMac]

Ha ha, we did going, going, gone photos. Photos of my hair slowly filling up a trash can. It's all temporary, my face is now slim and my hair full instead of the reverse.

[annekat]

Mine is coming back, but I'm waiting for the "with a vengeance" part. I think it's that it's just too long, and the lower part is the old thin part, so if I cut off 6 or 8 inches, I'll get a much better sense of how it's improved. Mine has always been wavy and seems about the same, and the color hasn't changed. I have a streak of grey in the back that I like to preserve because it's different, and otherwise it's mostly dark brown, even at age 62, and I don't color it at all.

[MikeG-2012]

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

Mine took about 6 months after the last dose to come back fully. It did have more grey than before too, but in my case it was pretty even, so that is OK. Get a good conditioner and make sure your shampoo has no alcohol in it. I would up buying Paul Mitchell from the woman who cuts my hair. She said it would help a little and I believe it did.

[Barry Forshaw]

Yeah, Alicia's hair thinned when she had Cyclophosphamide. It didn't come out in clumps like you sometimes see in the movies. It grew back over 6-9 months after she stop the Cyclo and started on the Rituximab. You'd never know she had an issue with her hair now!

[LovinLife]

Thanks everyone, I guess I was having one of those days. Just one more yucky thing to deal with along with moon face, fatique all that comes with pred and cyto. still learning to deal with the roller coaster.

Thanks for for all the kind words,
LovinlifesWife

[LisaMac]

You...can...do...this! Wear some rockin' hats and own it. This 'look' is temporary, just take care of yourself. I think we've all fought these same feelings but it's just for a season. Rest and try to enjoy the ones who love you.

[andrewsmith]

Hair loss is a common issue and lots of peoples are facing this severe hair loss problem in all the world and most of peoples are taking hair transplant surgery to get natural hair again for permanently.

[mishb]

Andrew, it's a little different for people taking chemotherapy type drugs :crying:

Do you have Wegener's?

[sbeach78]

I was on 175mg on cytoxcin it caused my hair color to change and thin drastically, and all the hair on my chest, arms and legs fell out, I am no longer on cytoxcin, and all hair has returned to normal....so don't worry its only a temporary thing.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[alicia_b]

Sorry to hear your hair is falling out. Mine did as well. But it will grow back! Also it may grow back different shade or style. My hair was auburn before, now its more red. It went from extremely straight and fine to crazy curly and frizzy. I felt like it was caused by the cytoxcin and predisone. Once I was off the pred, it grew back, slowly. I am still on 100mg of immunosuppressant.

[me2]

Andrew, it's a little different for people taking chemotherapy type drugs :crying:

Do you have Wegener's?

I clicked on the link in andrew's one and only post. It is a clinic in India for hair transplants. I think we just got a brochure for medical tourism.

[andrew]

Andrew (the other one) has been given a one-way ticket to Loserville

[mishb]

I thought as much :mad1:

Good job Chief :thumbsup:

[Mas78]

My hair was falling out really bad all over when I got diagnosed, doctors put me on 350mg Cytoxan and i had more fall out. my doctor said it would come back when i got off Cytoxan. but i don't think he accounted for the male pattern baldness that runs in my family. hair on the sides of my head are thick again but the top is lacking.

[annekat]

350mg./day of CTX is a lot! I hope it worked well for you. Nope, male pattern baldness would still apply to those who inherit it, I imagine. As a female, my thick hair had already started to thin before I took CTX, as is common , I think, in middle aged women, and the drug just intensified it a bit.. Now that I'm off CTX, the hair is coming back in, slowly. I've heard of hair coming back in thicker after chemo, and can only hope. So far, the color and texture is the same as before.