Hair Loss

[kat128]

Hello. I am quite new here still, so I thought I'd give a little back ground on my self.  I am a 26 year old Female  I have Hep C- genotype 6.  I started my 6 month treatment early February.  This week marks my 12th week.  My last visit to the doctor was both good and bad.  Bad news: side effect from treatment has lowered my white blood cell count to less than half.  If it goes any lower, I won't be able to continue treatment he says.  Good news:  The virus is now undetectable?  Which means the medication is working.  

I've had a few side effects:  rashes, back pain, tiredness, slight depression initially.I started to notice my hair is starting to fall out.  My last hair coloring was about a month ago- and immediately after, I noticed my hair was very brittle.  It would break whenever it was wet.  I shrugged it off to chemical damage.  Today I took a look at the strands of hair that fell out- and it looks like they came out from the root (which means they fell out, not broke off). This has been ongoing for about 2 weeks now.  

The PA who was instructing me on the self injections warned me that some patients shave their hair off completely because of the hair loss.  My question is... for those of you that have experienced the hair loss- when does it stop?  

Any help would be greatly appreciated!

[jazzy578]

I am  on week 6 of tx and I was very worried about losing my hair before I started this.  I have a lot of it, but going through tx is stressful enough without that little added problem. Since the meds dry us out, I have committed to drinking up to  1 gal of water each day, and I rub coconut oil in my hair at night in the hopes it won't dry out.  I  also color my hair, but I  sent away for an herbal  color that I haven't used yet, but thought I would try it tomorrow if I am up to it.  All the colorings on the market are very drying. I think I would rather have an inferior color job, but still have my hair if at all possible.  I hope some of this will help slow this down.

My daughter spent time in Trinidad and the native peoples all rub their skin with coconut oil and she told me that ladies in their 80's all have beautiful skin.  Of course they have that wonderful dark skin coloring that seems to defy aging naturally, but she said they all looked radiant.  

I wish you success on your journey  to good health.

jaz

[nygirl7]

Sorry about the job news Kat that's just so not right while you're arleady going through so much.  Just in case though you should know that if your insurance is denied (cut off) you can get the meds for free via the drug companies. Maybe that will at least take a little bit of worry away while you are going through this.

And no you are NOT alone.  I never would have made it through treatment without this forum. First off I knew nothing and the doc I had knew hardly anything.....learning what i did in here is what gave me a successful course of treatment.  I would have failed without the knowledge for certain.  And then the people - some of the people are just the greatest people in the whole world.  When I wanted to give up they wouldn't let me. When I got depressed they made me laugh. And most of all just having people who REALLY understood what I was going through each and every day helped more than ANYTHING.  Hep can be a really isolating disease and without the forum I would have been SO alone but with the forum it was like having 50 friends always hanging around to give you a hug when you need one.

You can't beat that!

Learn everything that you can. Get copies of all your blood work and tests and learn how to read them too (you can post them in here and people will show you what is really important to monitor and stuff like that). Everything you learn will be a weapon to beat this crappy disease...and you want all the guns you can get to attack this monster!

Good luck, hang in there it will get better! :)

[Vic1967]

Hi Kat,
I tried and often brag about that Nioxin Scalp therapy, (blue-green bottle). Before Tx my hair was also oily. But the meds really, really dried out my scalp.  It was bad, but that stuff really gave me some relief. If that happens, that's when you will find you can cut back on the washing.  You really won't need it. Those little bottles lasted 6 months!
Sorry to hear about your job, but that is good news that you will be able to be insured through your treatment.
Hope you all the post and keep us posted.
V

[kat128]

Hi All-
Thank you so much for your responses!  I am having such a rough day- and this forum has cheered me up by letting me know I am not alone.  I just received an early layoff notice today. CRYYYYYYYY  Thankfully, it doesn't effect until August, which is at the end of my treatment. I don't know how I'd be able to afford treatment without insurance.

Thank you all for your personal experiences with hair loss.  I am going to try shampooing less. (every other day?)  That's going to be hard because my scalp is so darn oily- and my hair is fairly long (small of my back).  I purchased some Nioxin today (scalp therapy treatment) Have any of you tried this?  I definitely won't be shaving my head, but I plan on getting a trim tomorrow.  

As for the genotype 6... treatment is for 6 months.  When I was diagnosed with genotype 6, I did a google search, but not much came up (is it really that rare in the US?).  My Mother told me she had HepC-genotype 1 about 15 years ago.  I asked the doctor how I contracted type 6 if my Mother had type 1.  He says it's possible.  =I  I am still confused about it to this day.  

can-do-man
Thank you for the advice. I will ask my doctor about Neupogen during my next visit.  

Again, thank you all for the personal experiences and great advice. I am glad I found this forum =)

[nygirl7]

Sorry my post got cut off in the middle our computers went down globally and logged everyone off because of some Macafee problem (spelling?)....what a long day!

You may be one of the people that don't lose very much hair at all so I wouldn't really over react on it.  You could be lucky! Most of us do get a lot of drying out so it's really crucial that you really do a deep moisturizer like once a week.  My hair went from curly to straight but it went back to curly again.

I certainly wouldn't shave my hair off until I saw how things were going!

The good thing is that my hair grew back like a wild weed.  Hair grows an average of a half an inch a month but I swear mine grew  much faster than that.

Remember this will all be over so don't get too depressed about it. You indeed are a rare one around here I don't think I've ever seen one geno6 in all the years I've been here!!!!!!!  :)

BEST of luck!

[Vic1967]

Hi Kat,
I first found this forum because I was so worried about my hair. Oh, it stinks. I lost a lot, but I really, really was more concerned about it and noticed it so much more than anyone else.  It became an obsession practically!  Counting hairs.  Not too hard since they were everywhere, clothes, bed, pillow floor, floor, floor, car, clogging the vacuum.
I started with a lot, it was long and I finally decided to go short for the first time in my life.  I guess it helped.  Everyone liked it but me. (I put before and during pix on my profile)
I finished treatment (48 weeks) on 3/5/2010.   It still falls out a bit but is so much better.  It gets oily now!  My scalp feels better and it is growing in.  I have this little mohawk thing sticking out of my part and I look a lot like the finger in the light socket look!  But hey, I will take what I can get.
I really don't think you should shave it.  I was told that it is rare to completely lose all of it. Try to make peace with the fact that it is temporary and grow back.  Be kind to it, don't wash it too often.  It will end one day and it will seem like a memory.

[Marcia2202]

Hi kat, you are a rarity here.. :-)  How long do genotype 6 treat?

I lost about 70% of my hair and it went from curly to straight. If I remember correctly it stopped falling out after about 2 months post treatment. I am 1 year post now and it has grown back all nice and curly. The hair is healthy. If It would have fallen out more I would have shaved it off.

Good luck with your treatment, I'm rooting for you!

[annieCinMD]

I lost probably 1/3 to 1/2 of my hair. Fortunately, I have more hair than most people. I notice that there is less of it there because of the amount that is in my pony tail. Nobody else can tell unless I show them all the regrowth. I'm almost 9 months past EOT. I don't think you will need to shave your head. Losing that much is pretty rare. Washing less frequently is good advice because that's when the bulk of mine came out. I comb it out with a pick in the shower. Don't be alarmed if it continues to fall out after you finish tx. Mine did for about 15 weeks (eeek!), but I'll repeat, it was not obvious to anyone but myself.

[jdwithhcv]

I had a couple of cycles of hair loss.  After about 4 months of tx, I lost a lot of hair for a couple of weeks, then it stopped falling out for about a month and then the whole cycle repeated and by then my hair was really thin. For a while I thought about shaving my head, but I waited it out to see how much I would lose.  I wore scarves and doo-rags and occasionally a wig (hate wigs!) and I cut way back on the frequency of shampooing because my hair was so dry.

My hair started to grow back even before I finished 48 weeks of tx.  Within a couple of months it was back to normal.  Hang in there, its not forever.  Good luck.

jd

[nygirl7]

I lost about 75/80% of my hair in my 72 weeks (but I also went hyperthyroid and one of the sides of that is your hair falling out too so I got double whammied kind of).

I went on ebay and bought a ton of wigs.  Different shades, streaks, lengths.  I made it fun somehow and even though having your own hair is better I could change the wig to match my outfits and makeup......

[Trinity4]

Hi Kat,

I've never heard of any ladies shaving their head while on antiviral therapy unless they like the GI Jane look.  Most of us lose hair but not to the extent that chemotherapy patients do.  I'd say the average hair loss is about 1/4 to 1/3 and it seems to happen in cycles with some weeks being worse than others.

I had a lengthy treatment and my hair loss was noticeable to me but no one else.  I did cut it short so it would look fuller and had my hair colored professionally with semi-permanent color.  I used professional hair products and I believe it helped to minimize the dryness and hair loss.

I continued to lose hair for about a month after stopping treatment and seven months later my hair has grown in nicely and I'm attempting to wear a longer style again.

Be patient and stay the course.  Things will get back to some type of normalcy once your treatment is completed.  

As Cando mentioned, talk to your doctor about Neupogen.  There is no reason to stop treatment because of low whites if helper drugs are available.

Good Luck
Trinity

[can-do-man]

Hi kat, wow your the first geno 6 i think we have ever had here, congrats on being und this early in tx. There is a drug called Neupogen to boost the white blood count (ANC) please talk to your doctor about using it. Many here have used it with great success.

All your sides are normal, sorry but your hair loss most likely won't stop till you end tx but you should not lose it all. NYgirl bought wigs to wear and from what she said was a big help.

Hang in there, please talk with your doctor, your off to a great start on tx. Stay well, wishing you the best

Cando