Hair Loss

[windchime]

I'm about 8 weeks into the CTX therapy and my hair loss is becoming significant. :ohmy: Has anyone lost all their hair on CTX? Just curious as to what I have to look forward to. I realized everyone is different but I am a curious person. :rolleyes1:

[Pete]

Hi Cindy,

I didn't have any significant hair loss while on ctx. Once I went onto mtx, my wegs doc also prescribed 1 mg/day of folic acid because hair loss is a side effect of mtx. Might want to run this by your doc.

[Alysia]

Hi Cindy,
I had hair loss with MTX so I started to take: folic acid, avazinc, multivitamin "strong hair". I also bought 2 kinds of special shampoo. it helpes. now that I am taking less MTX the hair loss stopped.

[pberggren1]

What about RTX Cindy?

[windchime]

I was taking folic acid, but my neurologist said my labs showed high level of folic acid which can mask low B2 levels. Low B12 levels can cause neuropathy. So today I decided to start taking the folic acid again and get a B12 supplement. Hopefully they will all sort themselves out in the old body. :unsure:

Wow Alysia all that. Glad it helped. :thumbsup:

Phil I'm going to check with the Rheumy on the 4th. I'm having a few other side effects too like canker sores on my tongue. Ouch. :ohmy:

Andrew I love these little emoticons. :love:

[Captian Al]

My husband, Darren, is just finishing 6 mos on Cx. He did lose a lot of hair--mostly in the last couple of months

[MikeG-2012]

My hair loss was more of a thinning than losing. I did 6 months of CTX last year between April and October. It took until February or so until the hair grew back in fully. Funny thing is now at about 3:00 in the afternoon, my hair starts to curl a little on the ends, Had very straight hair until the CTX. Friend who cuts hair says everyone has different side effects from chemo drugs. one woman had one side of her hair go curly, the other straight.

Hang in there, it will get thin, but it should grow back OK afterwards.

[windchime]

My hair loss was more of a thinning than losing. I did 6 months of CTX last year between April and October. It took until February or so until the hair grew back in fully. Funny thing is now at about 3:00 in the afternoon, my hair starts to curl a little on the ends, Had very straight hair until the CTX. Friend who cuts hair says everyone has different side effects from chemo drugs. one woman had one side of her hair go curly, the other straight.

Hang in there, it will get thin, but it should grow back OK afterwards.

Right now it's in the thinning stage, albeit quickly thinning stage. It's worse when I wash it. I know this too shall pass, but I was hoping to avoid it. Thanks for the info everyone. I'll get through it was just wondering about others' experiences.

[Alysia]

it is depends much on the shampoo you are using. I am using one with obliphica. try to look for. and another one that I bought at my barber shop and cost me fortune. but what else can a girl do ? :wink1:

[windchime]

Indeed Alysia what else can we do? Lol

[marylz]

Hey Cindy,
Unfortunately I am one of the lucky ones who lost most of my hair after 6 treatments of CTX. It actually got so thin that I went to my hair dresser and she took most of it off with a razer and then I wore bandanas til it started growing out again. It actually came in much darker than it started out. Now I am on my next regimen of CTX once every 2 months after a flare over X-mas, so we'll see if I lose it again...

[windchime]

Hey Cindy,
Unfortunately I am one of the lucky ones who lost most of my hair after 6 treatments of CTX. It actually got so thin that I went to my hair dresser and she took most of it off with a razer and then I wore bandanas til it started growing out again. It actually came in much darker than it started out. Now I am on my next regimen of CTX once every 2 months after a flare over X-mas, so we'll see if I lose it again...

Sounds like you had the infusion? I'm on pills and I would love it if it came in darker since I'm about 80% gray. We'll see what happens. Thanks for sharing and good luck with this second go around. Hope you don't lose it this time.

[Lilly]

By CTX, is that Cytoxan? If so, I took it when first diagnosed, and as my face was getting rounder and rounder from the prednisone, the cytoxan was making my hair thin! I was devestated! I felt guilty because I should be glad to be alive! but I was also gaining weight from the prednisone, and so I was planning on getting married before my diagnoses, and I wanted to put the wedding off until I got back to looking like myself. But my fiance did not care. He wanted to get married! So at my wedding, my Mother had made my wedding dress, and thankfully left enough fabric to make it bigger, and my face looked like a pumpkin! and my normally VERY THICK curly hair was so thin, you could see through it! I felt like someone else standing up there at my wedding! But I had been through so many emotions, that I was just very thankful my fiance still wanted to marry me after finding I had a dz. And after finding out, we could not have children, the cytoxan had made me unable to. So my wedding day was bittersweet for me. I didnt know what to expect about my future. When you get a dz, and there are so many out there, It makes you realize that you are not in control of your life. You have to "go with" what life hands you. Its what you do with it that counts. Take care, and it was kind of fun watching my hair grow back in. I could turn my head to the side, and you could see the thick park growing back in, and the thin parts below the thick part! The guy who cut my hair, would trim the thin part off a little at a time until FINALLY it was normal again. I ought to dig up some pics from our wedding to show yall the differnce, like the "before and after". But I think I left all the wedding pics at our house when I left him. (Sad yes, 20 years we made it, good 20 years! but he couldnt handle this mean dz.) Life goes on! Im in my next chapter, and happy. Love to all, and Cindy, hang in there! I didnt lose it all, and some people did not even notice it! Ill be thinking about you! Hugs!!!!

[gilders]

Unfortunately ctx had a bad effect on my hair. I wasn't on ctx for long as I was intolerant and had to stop the treatment. Even though I wasn't on it for long I lost almost all my hair. I really should have had it all shaved off, but I ended up with most of my hair at the back of my head which was ridiculously long, a few strands dotted around that were long and the majority of my head was hairless - I looked ridiculous, but was so unwell at the time I didn't really care.
Once the first shots of new hair poked through I grew back really quickly, as thick as before, but was more wavy/curly and darker!
I can't remember for certain if other areas of my body lost hair, but I'm 95% certain it was just my head.

[annekat]

Cindy, I was also on CTX and did have some significant hair thinning. But I got nowhere close to losing all my hair, and I doubt if you will, either. The thinning seemed to level off after awhile even though I was still on the drug. When I got off it, and got on MTX, that was the first I heard of using folic acid. It is said to help with hair loss, but I think there are other reasons for taking it with MTX. I see you have a reason for not taking it. In any case, when you are taken off CTX, I think you'll find your hair starting to fill in again... unless they put you on MTX, maybe. Like we say, everyone is different. The shampoo Alysia recommends sounds worth a try, for sure.

[goosey]

Hello windchime, about hair loss !!! I was so worried but it was only thinning, It was ok & my hair is back to normal so don't worry it's not permanent.

[whatthewhat]

Ah, hair loss. :scared: As the mom of a teen weggie who talks to other moms of teen Weggies, this is a familiar and Very Crucial topic! There are some I know who have had very significant hair loss. Our daughter lost a lot of hair although she was not on Cytoxan, "just" Mtx, and takes the nutritional supplements she should. Clearing the drains was a side-problem, but of course the main issue is the toll on self-esteem. Interestingly, our daughter's hair loss decreased, and then amped up again, and the rheumy has told us that was because the Mtx had kicked the butt of the WG and was now looking for something else to do. The hair loss has now slowed with a decrease in Mtx. Our rheumy mentioned to us that "the lupus girls" swear by a certain type of shampoo available in health-food stores; I think it is called Dr. Browner's... Anyway, all this to echo others in that you're not alone, and the hair does come back. (We maybe need an emoticon that shows hair growing!)

[annekat]

There is a Dr. Bronner's liquid soap that can be used as shampoo, though I hadn't heard of the hair loss aspect, if that's the one they were referring to. In any case, Dr. Bronner's is wonderful stuff, comes in several delicious natural scents, and has gotten a little on the expensive side but can last a long time, as a little goes a long ways.

[Alysia]

We maybe need an emoticon that shows hair growing!)
http://twinpossible.com/wp-content/uploads/2011/04/smiley-with-hair.gif

[annekat]

There is a Dr. Bronner's liquid soap that can be used as shampoo, though I hadn't heard of the hair loss aspect, if that's the one they were referring to. In any case, Dr. Bronner's is wonderful stuff, comes in several delicious natural scents, and has gotten a little on the expensive side but can last a long time, as a little goes a long ways. I might add that Dr. Bronner's is not only available in health food stores; I have seen it in regular grocery, drug, and "big box" stores, sometimes in a special end-of-aisle display or in a "natural products" section, or even just in with the other soaps. Where I live, anyway. I started buying it probably 40 years ago when it was only available in health food stores.

[windchime]

I love Dr. Bronner's soap, but it can be a little pricey. Still well worth it though.

[KimH]

Hi, my hair has thinned and is frizzy. I do have new growth. I was told that folic acid only help with MTX. I will be off of CTX with in a few weeks, I hope! I started RTX 3 weeks ago. I can't wait to begin to look like me again. The drugs save our life but some of us look a bit different for a while. Hang in there and hang on to all of us weggies who got your back!

[annekat]

I love Dr. Bronner's soap, but it can be a little pricey. Still well worth it though. Great picture, Cindy! The dress is great, and so are you. Yes, I haven't bought Dr. Bronner's for awhile because of the price, but am now thinking I might splurge. I guess the peppermint is still my fave, though some others like the almond and eucalyptus are great, too. Too bad I can't smell now, but think I'd still feel the cool, invigorating sensation that it gives.

[annekat]

Hi, my hair has thinned and is frizzy. I do have new growth. I was told that folic acid only help with MTX. I will be off of CTX with in a few weeks, I hope! I started RTX 3 weeks ago. I can't wait to begin to look like me again. The drugs save our life but some of us look a bit different for a while. Hang in there and hang on to all of us weggies who got your back! Good to hear from you, Kim, and you WILL look like you again. My hair was already frizzy! No change is apparent in the texture, but I can definitely tell it is thicker from the way it fills up the barrette I use to hold it back.

[tmkd]

Lost my hair when I was on Cx. But just on my head, not beard. Oh fun. Started to grow back slow a few months after I was off Cx. Got my first haircut in a year a couple days ago. :) Things do get better! (edit: oh and it came back much darker too!)