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My hair is falling out big time?

by eksnead, Jun 21, 2009 06:32PM
Anyone else on the Interferon, Riba, Boceprevir trial noticing more hair loss than anticipated?

Just curious.

And anyone else got Camel eyelashes?

At least this stuff is working, I am Genome 1A  naive, and went from 22 million VL to ND in 3 months. now at 6 months and 5 more to go.

To be honest, the treatment has not been as bad as i had been told it would be. Am just very tired, and have to take procrit 40 units a week now. RBC is low usually ranging from 10.1 to 10.9.

just trying to hang in until November...

Esnead


Member Comments (26)

by newleaf09, Jun 21, 2009 07:52PM
You're getting by very well.  I was on boceprevir for 6 mos.  Much more hair fell out the last few mos. of TX.  I went off bocep 3 wks ago and I am still shedding like a dog and hoping it stops soon.   I just vaccuumed the house, a rarity on TX, and had giant hairballs in the vaccuum, mostly mine, not cat's.  I am just planning to wear my hair up for the next several months till it starts to thicken again.  It may be too thin to cut off and look good.  Just going to wait it out.

by newleaf09, Jun 21, 2009 07:52PM
Oh yeah, the camel lashes too.  Hope THAT lasts a little while!

by meakea, Jun 21, 2009 08:20PM
Yes, I've had at least 80% hair loss and I have resorted to wearing a wig to work.  In fact, just today, I pulled out our hair shears and had my hubby shear it all off down 3/4".  The hair that was left on my head was very lopsided, dry and totally flat and ugly.  I certainly wouldn't encourage anyone to do what I did but, at the same time, there's something very liberating about it and it's much cooler under a wig. When I'm at home, I flip off the wig and just feel free from hair problems.  

My sister is currently going through chemo for breast cancer so this is part of the reason I got the nerve up to take my hair down to 3/4".

I did have the llama or camel lashes but, alas, they fell out too, as did my eyebrows.  My lashes and eyebrows are starting to grow back though.

There are a few other people on this site that have had hair loss similar to mine but most people do not have the kind of hair loss that I have had.

by Andiamo1, Jun 21, 2009 08:21PM
Both the camel lashes and hair loss are side effects of Interferon.  Both will return to normal after you stop treatment.

by annieCinMD, Jun 21, 2009 08:46PM
I, too, have had both of those happen. I just got done cleaning my room and bathroom. I washed my sheets yesterday and pulled more of my hair out of the dryer screen that cat hair, usually mostly cat hair in there.  I have the long lashes and my eyebrows look bushier, too. Might have to wax them down. I'm on a PI trial, too, and the hair loss started before I began the PI, so can't blame it on that.

by Marcia2202, Jun 21, 2009 09:38PM
Yes indeed. Almost 12 weeks post tx and my hair finally stopped falling out. Lost about 70% during 8 months of tx and 2 1/2 months post. It was coming out in the handfuls and was all over the house too. Ewwww... Fortunately it fell out evenly so I just wear it pulled back into a pony tail.

The lashes were long but are slowly returning to their normal length :-(





by YuK, Jun 21, 2009 10:29PM
My hair or fuzz (dry, thin, and ugly) is now being worn back, I have just enough to put a small clip on it.  I like the llama lashes wish they would stay around.

When I had the Riba rash, the falling hair was driving me insane.  I was iching and the hair was everywhere.  Using cream and hair sticking to the bod was miserable.  At night it would fall on my pillow then touch my face.  Seemed to slow down now but not much left to lose.

I do like the "no shaving" of legs part.

by charm27, Jun 22, 2009 06:16AM
I had the long llama eyelashes no eyebrows ( they fell out) and I lost 80% of my hair my the 6th month. I txed for 55 weeks.

Im now 6 months post tx and my hair is officially grown back!
Wish you well in your tx.

harm

by newleaf09, Jun 22, 2009 11:56AM
I have such a skinny sad little ponytail that I search for smaller barrets to put it up with.  Everytime I run my fingers through hair, I get at least 3-4 (gotta stop doing that).  It can't be stopped no matter what you do, but going to washing your hair only once a week will make it seem less alarming when you look in the drain. You get so dehydrated that oily hair will never be an issue.

Gosh Marcia, 12 wks. post TX?  I may do the chemo shave yet.

3 weeks post TX, I noticed I don't have any underarm hair.  What's up with that?  I like it, but will it come back?  I've got fine fuzz on my arms, about 20 hairs on both legs.  I think there is something female-hormonal going on with interferon.  They've studied hormonal interaction in men but not women.

by HCVSuperMom, Jul 01, 2009 11:58PM
To: Esnead
Oh Yeah! Hair,hair everywhere. In the bathroom, in the car, clogging the vac.cleaner. In the fridge, how does that happen? I complained about my thick horse hair, but I am glad that I have had plenty to spare. I am growing leg and underarm hair at my normal rate. Too bad, I was hoping I would be able to get out of shaving this year.

by nygirl7, Jul 02, 2009 09:01AM
The llama lashes go away unfortunately but your hair WILL grow back and it will grow back FAST.  I lost about 80% of it...really seriously thinning hair but not bald and what I did have cracked and broke and was so damaged. I finally started wearing wigs to work that I bought on ebay........they itched a bit but made me feel like I looked SO much better. Helped to cheer me up cause I played with them and got a whole bunch of different ones and I'd match them to my clothes...have to make HCV a funny thing

by newleaf09, Jul 02, 2009 01:08PM
At 4 wks post TX I think my hair loss has slowed a little (might be a fantasy).  I can't see the thinness when it is slicked back after washing and it looks good.  Anyone know how people did that when it was a style?  I guess gel but that makes it look wet all day.  Is there another way to get that look?

by GreatBird, Jul 02, 2009 01:15PM
Pomade.

by newleaf09, Jul 02, 2009 02:19PM
Isn't that grease?

by alagirl, Jul 09, 2009 05:50PM
nygirl got pretty eyelashes during tx.  

I lost a lot of my hair, maybe even 2/3 - but I had a bunch to begin with, ALL of my eyelashes and a lot of my eyebrows, and most of the hair on my legs (that last part was pretty cool actually)

It started after the fifth month and I only treated six months but the loss continued for a few weeks after I stopped tx.  Hair was all over everything.  I gave the cats a run for their money.

by alagirl, Jul 09, 2009 05:50PM
Oh yeah.  It all came back.  Even, unfortunately, the hair on my legs.

by alagirl, Jul 09, 2009 05:52PM
I wasn't on boca - just interferon/riba.

by eksnead, Jul 16, 2009 08:57PM
thanks guys!

they switched me off the boceprovir to the placebo at week 29. i can tell because my rbc is up and i no longer need the procrit and the hair loss has slowed down. i also don't get the metallic taste anymore. i feel almost human!

now the only concern is that the virus might come back. not sure what happens if that happens.. any one know?

by eksnead, Oct 10, 2009 05:52PM
To: all
Well, i have been off the boceprevir for two months but still on interferon shot and riba (vl still undetectable) and the hair loss has finally stopped. and i can see little sprigs of new growth already. about 1/4 of an inch or more.

can't wait for it to get a bit thicker but i have to say, the wigs these days are quite good ( i got a real hair blonde one)  and so  very convenient. no one even notices its a wig and all i get are compliments on how great my hair looks (?) i plan to travel with one to Europe to save hair styling time next year!

by eif, Oct 10, 2009 06:57PM
only on tx for 2 wk but I am on the co-pegysus. havent lost any hair to speak of yet cant really afford to my hair is very thin and fine. Mostly my legs are numb and a little blurred vision any one know about the numb legs?

by newleaf09, Oct 10, 2009 07:13PM
Hair loss started late for me, around 5 mos. and lasted till about 10 wks after EOT.  Numb legs?  Seems early for anything like that.  Look up peripheral neuropathy.  It mostly involves both hands or both feet and causes either numbness & tingling or pain.  Hope it's something else.  Just curious if there's a connection but are you taking shots in legs or belly, eif?

The llama lashes just disappeared without me noticing a few months after EOT.  It seems weird that I never noticed falling lashes or any sign of them disappearing at all.  It was fun to wear mascara and have Maybelline commercial lashes, but they got in the way more than anything else.  Glad to see them go.

by annieCinMD, Oct 13, 2009 10:21PM
I guess there is hope that mine will quit falling out. I'm at about 9 weeks now and it's getting pretty thin. Just washed it tonight and still having pretty big clumps coming out. I comb out in the shower with cream rinse (long hair). Fortunately I had thick hair before tx, so it isn't obvious to anyone else. I have never been able to get it all up in anything but a ginormous octo clip, and it fits in the small ones now...kind of like that, actually.

by YuK, Oct 14, 2009 12:08AM
dang, I need to get a new passport photo to have my passport renewed and I hate the way I look right now.  I think, I will get a wig and get a glamor shot.  I don't want to carry around a passport for the next 10 years with my death face and my dry ballerina doo.

stacie

by eksnead, Oct 16, 2009 09:52PM
To: Yuk
They make some pretty good wigs these days.. i was really surprised! very lightweight and comfortable and lots of styles available. i got a layered blonde wig and no one can tell its not my blonde layered hair.
thank god because my hair, what's left of it, makes me look like the CryptKeeper. its so dry and fragile and thin that i don't even wash it anymore, just put on more conditioner and rinse it every week..
but this too shall pass! and its a small price to pay for ND!

by YuK, Oct 16, 2009 10:09PM
To: eksnead
I'm going to try to wait it out.  I'm finished now (post - 3 full wks).  

Saw your dogs, they are soooooooooo cute!

by 14cheri, Oct 20, 2009 12:55AM
I take shot 14 tommorow. I have not lost any hair at all.Thank goodness.I have no hair under from heart surgery, thats great. the hair on my legs doesn't grow much but the hair on my head has not come out at all.
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