can someone give me some advice?

[mrbill]

i was told i only have 3 shots to go then i am done. they made an error and theyt were off by one.  anyway, like most know, i am a 3A and was taken off ribaviran 2 weeks ago, due to constant anemia and all that. i told my doctor i will stay on both for as long as it takes, but she said, no and i have a huge chance to stay clear. well, tuesday i asked my nurse can i make up the 4 shots missed for when i was taken off temporarily, and she said no. after reading beverlys post just now, further down and reading her husband is also a 3A, went through horrific sides as well and the virus is back 6 months after tx, i am really nervous and praying i dont have to endure this as well. especially after hearing some have had there test only 6 weeks after tx, and i have to wait 6months. march 9 will be my test that will reveal if i am still clear. when i see my doctor in a couple of weeks, should i beg her to make up the shots? and is there any advice anyone can give me to help me stay clear? should i see another doctor if they refuse? when diagnosed in 1999, after having a voluntary test, not becuase of anysigns, i was told i have it, but i naturally beat it. a year later, i kept getting high liver enzymes, but after getting retested for two years in a row, they said i was still naturally clear and they couldnt understand why this was happening. every year the enzymes were a lil higher. well it was not until july 15 2003 after my last enzyme test was a lil more higher, 125/88 my doctor retested it was told its active, maybe it was always there, i dint take no risks. do i need a new doc

[LvdByGod]

WOW! That is so cool of you to take them in. you have alot on your plate now. i hope it goes smoothly. my husband and i have taken people in over the years and it can get tough. i will pray for you guys that God would strenghthen you. I will also pray for your daughter. drugs are so hard to quit. I used to do them and that's how i got the hepc. if i hadn't given my life to the Lord i doubt i ever would have quit. I would have went straight down the tubes.
I will pray and now do pray that your daughter will soon find real joy and peace. i pray God seeks her out and makes himself irresistable to her. He got me one night while i sat there in my room looking for more crack cocaine. I happened to tune into a Christian t.v. show and the Lord spoke to me so strongly through that particular show that i started to seek him out as well. I'ts a long story but He soon hooked me up to a very nice church and new group of friends. i freely gave up the drugs for a true and real high. i was 23 at the time. i am now 42.

With the Lord all things are possible! Thank God for that.
God bless you as you serve Him by loving your family. I'm so glad that there is people out there like you!!! talk to you soon, sandi

[cindee]

;)  I feel the same way about you. Thank-You for the prayers, it's My daughter who is on drugs. And 2 wks ago we took in my husband's 16 yr old step-son. His Mother kicked him out on the streets and we got a phone call @ 12:30pm. Long story, short; his "Mom" was looking for a reason, seems her son and husband cannot get along. I could never kick my child out @ 16 yrs of  age. We are getting along fine, but since we moved my 10 yr old granddaughter in...he's having to sleep on the sofa. We live in a new 2 bedroom mobile home, and the "mom" lives in a quarter million dollar huge house!!!! I must say there's more to life than money, but I wouldn't say that to her. She hasn't even called to check on him. But he knows he is LOVED here. Life goes on.........had to vent....sorry folks. I love you all, Cindee

[LvdByGod]

hey thanks cindee, thanks for the encouragement. i shall surely keep you in my prayers. you are a very kind person. AND CONGRADULATIONS ON BEING CLEAR AND OFF TX!!! sandi

[cindee]

Hey, Thank-you for your prayers. I really appreciate YOU. As for the hair thing, yes it does grow back. I can tell at my front hairline...it's like baby hair. I did borrow a wig from a friend, but I never had to use it. I think your hair falling out will stop soon. It freaked me out when mine was coming out...but it did stop. I even put a perm in it last Sat. Hang in there, and you are always in my prayers. Much Love, Cindee ps I am 3 months post tx. now.

[honey1616]

Fubar...Sorry to hear you are having a bad day and get some rest so you will feel better!!  Yeah I'm finding out everyone is doing so different on all sides including hair loss.  My hair is thick also which will help hopefully cover thin spots.  Yikes..I just keep getting a mental picture of me about summertime...clumps gone here and there and this wasted look and try to appear normal LOL  I have only told my immedidate family and my mom knows.  Other then that...I don't want anyone else to know.  Just want to slide through this year and open my eyes and its gone. I hate to wish my year away but...what???  This is such an awesome experience..you want to cherish every moment.  hahahha NOT   Thanks Fubar for listening to me rant!  You truly are a sweetheart and I'm soooo glad you are part of this wonderful board!

[LvdByGod]

Well, though my hair is falling out by the handfulls, it is comming from all over the head. not just one spot. no one has noticed but my husband and the only reason he noticed is that he cleans the tub. he said my hair has been clogging up the drain since tx started. but, you guys, it does grow back dosn't it? so no big deal right?

[Fubarcat]

My hair started falling out on week 2.  I freaked.  However, I am blessed with very thick hair and my husband said he couldn't even notice.  I just had my hair cut and colored last weekend, and since then, it hasn't been falling out at all. And my stylist never said a word about my hair, so I guess she didn't notice either and she has been doing my hair for years. May be a co-inky-dink, but I think maybe it starts falling out and then stops falling out.  I don't know.  I only did #5 last night, so I'm still a newbie.  I've been in bed all day, got up to check and make sure Ringy was back with us and now I'm going back to bed!

[honey1616]

ROFL....hahaha now I'm thinking about me running around in a full blown costume...Hey not a bad idea...noone would know who it was so I wouldn't have to explain!  Ok..maybe I'm jumping gun here and will just have to cross that bridge went I get to it.

[Indiana]

I don't know of anyone who actually went bald from this. One gal did say she had to resort to a wig but that may have just been her vanity. She said the wig looked worse than her real hair though. Most that do lose hair only get thin. I know I did. Mine never reall fell out in clumps but rather just didn't grow. I only had 1 haircut that whole year. I usually have to get one every 2 months. I thought it looked awful, but in reality nobody else really noticed it. They all just knew the "something" was different. Of course, my skin looked SO bad that I'm sure it took all focus away from my hair problems.
Don't worry yourself about it too much. If it gets really bad, we'll get you one of those whole body costumes that have the whole head mask. Maybe something like a nice monkey outfit. Then you would have the added bonus of not needing warm jammies as they look to be real warm. You'd just need to brush yourself all over twice a day. Your Nioxin bill might go up though if you have to shampoo the whole body.  Hey, can't have everything......

[honey1616]

dhbill....That is soooo funny about the hair thingy.  I was rolling when I read that.  I have noticed and I am only in beginning at week 4 but went to get my hair cut yesterday and my scalp is so sensitive.  I keep reading these hair loss posts and just getting a little ansy about that.  So have to ask everyone...Could other people tell you had lost hair or is it just you noticing its getting thinner?  And when did it start coming out because if I remember right..someone said about 3 months. Ok..thats scary because if I'm doing 48 weeks...I'm thinking I will be bald if I lose hair from 3 month mark to year.

[LvdByGod]

it is so nice to hear from you guys. i will be praying for you all. it is a tough road. we sure do need the Lord in all of this. it is nice to know he has us in the palm of his hands and that nothing can happen to us apart from his aproval. when it's all said and done that is my only comfort. "perfect love casts out fear".
Tina, i am so sorry that your husband has to go through this tx again. i surely pray it works now that the dr. knows what he's doing.
Almostdone,i pray for your daughter in law that she stops doing the drugs. she is blessed to have you to care for her daughter. i pray she gets the help she needs to get her life back and i pray that God strenghthens you for this leg in the race.
Okie, did you get the gallbladder thing from the tx or did you have it before that. i pray for your surgery that it goes well and reduces your alt/ast. i presume you have cleared. are you ever tempted to stay on for more than 6 months? i do. i hope the dr. let's me. but, i know you've had a really hard time you probably can't wait for it to end.
my prayers are with all on this board. GOD BLESS EVERYONE HERE!

[cindee]

HEY GIRL!!!!! So good to see ya post! I've been having a time w my husband's laptop. I keep getting , this page cannot be displayed. He had it worked on today, so maybe I can be on more often too. I have MISSED YOU so much. My hair fell out a lot too, but I had ....HAD....very thick hair. I am post tx. 3 months today!!!! I feel better some days at least, still have a lot of muscle pain...doc says it could be fybromyalgia. I see a pain specialist on Feb. 17th. My muscles and pressure points kill me. Sometimes I feel like I have a knife in my back, between my shoulder blades. Doc says trama can set in fyromyalgia. The tx. was enough...but then I took in my 10 yr old g.daughter, because her Mother was using cocaine, and now is on crack. I have been so out of it! But I'm learning to let go....she has drained me and my parents dry. She refuses tx. So I'm letting GOD handle it. I can't anymore. So please say some prayers for me and my family. I will do the same for you. I have missed you girl!!!Cindee       ps I AM SO HAPPY TO HAVE MY G.DAUGHTER WITH US. AND SHE IS VERY HAPPY TOO. >>A-B HONOR ROLL<< gotta braggggggggg. lol

[DH Bill]

How ya doin man. 1 to go huh WAY TO GO! They found gall stones when they did all the initial test but doc hasn't mentioned it since, maybe cause my levels are all normal now?
Sorry everyone but talking about our hair getting weird I gotta share this, In addition to my head and facial hair doing weird things my wife just told me I'm getting a lot more hair on my back AND asked me if I was trimming and brushing my hair down below I said NOOOO! She said just doesn't look the same.
YA WHAT A RIDE
Bill

[OkieJim]

I'm so glad your still with us. I'm 2B and have 1 left after tonight. So sorry about the hair thing. Mine has just thinned very little falling out so far. Need to have Gall Bladder removed after TX. Dr. thinks that will help on elevated enzymes. It been a real roller coaster ride.

[tina b]

Hi, when I ask about the iron stains on the biopsy he said, and I quote,"They forgot to look". HE FORGOT TO ORDER IT. I have a copy of the orders and it was not ordered. When the new doc order the slides from the biopsy, he didn't get one either. What a mess. He had iron blood test prior and the iron was something like 342....way to high. So anyway, the new doc isn't doing another bx before starting meds this time, but all and I mean all lab work is good for now.......I am keeping my fingers crossed. Thanks!

[jg2001]

I'm sorry, I don't have any comment, but I just LOVE your name!

Jamie

[Sambone Martian Ambassador To the moon]

allot of hair came out too. however it came back after tx and is now thicker than when i started tx. Oh yea it also all stuck straight up in the air while  on Tx. I could put a hand full of gel in my hair and when it dried it would still stand straight up. It WOULD NOT lay down. I liked to think of it as einstein hair. HAHAHAHA!!!!

[LvdByGod]

HI JIM,how are you? did you ever here back from myrtles? i had no computer for a few months. i'm doing ok, my hair is falling out by the handfulls and that is freaking me out. my head even hurts on the scalp. weird. the rest of the sides are managable. good sleep is rare. my dr. denied me of my 12 week pcr. that was very disapointing.but i went to my primary care dr. and he is willing to order the test for me. it is going on the fifth month for me now. but, i am going to try to stay on the medicine for extra time because of my weight and fatty liver. which i believe may make the virus hide out more efficiantly. what geno type are you? 2,3,? how far along are you and how has it been for you. you havent had it as easy have you? always nice to hear from you. BLESSINGS, SANDI

[lookin-up]

I'm not sure what your Dr. has in mind, but when I became anemic in early treatment (I am 1a and now on #27/48)  They put me on Procrit for the rest of my treatment - one shot a week & I have not been anemic since.  My hemogloben # went down to 8.5, and it is my understanding that anything lower than that means a blood transfusion, because your body cannot bounce back on its own.

I'd get another oppinion to ease my mind, but that's just me.
I wish the best for you - chin-up & one step at a time!

Lookin' up

[OkieJim]

How are you doing??? Haven't heard from you for awhile. I know I haven't been here much either. Doing #23 tonight. I pray you have been OK???

[LvdByGod]

TINA,did your husband have high iron markers on his biopsy? you know that iron stain thing? just curious, because i would have thought that the dr. would have known about high iron levels through this. thanks for your responce. sandi

[cc2]

I would agree with you that you should make up the time you missed.  However, did you have a high viral load to start and if you had a bx, what stage were you at?  Do you have copies of all your blood test through tx, if so check you iron levels and see if they are high.  Get this information together, so when you see your doctor, or call him even now, you have this information to support why you want to continue and that you just want to do those shots.  I would go over the nurse's head and talk to the doctor direct, but be nice about it, so you don't **** her off.  You are suppose to do 24 weeks of tx if your blood counts hold up.  Tell him, I'm the one with Hep and I don't want to have to do tx again.  Good luck.

[Luke307]

Mrbill, I agree that you may not have the best medical advice. Have you talked about Procrit for the anemia with them? I don't know much about it but I do know that it's used succesfully. I may have to do something like that myself.
                              Good luck,
Luke307

[tina b]

Hi mrbill,
I personally think you need a new doc (someone who has successfully treated hepc before)or at least have this one check your iron and ferritin levels. The term active or inactive have long ago been discontinued in reference to hepc...you either have it or you don't, if you have it is active. Your doctor seems out of the loop to me. My husband is 3a and relapsed on 6 month post tx. I will be giving him his 1st shot (second round) tonight. My husbands alt/ast never did go to normal during tx. It would drop a little each time they tested during tx but never went to normal until he got rid of the iron. (10 draws in 10 weeks)His alt/ast hung around 235/192 higher sometimes and the lowest it ever got on tx was 139/162....those are some high numbers. The hepc doc treating him at that time didn't bother to check for hemochromotosis even though we requested it from day one.........not until end of tx and one BIG fit did he check for it and it was positive for BOTH GENES......he ate crow that day for sure. Anyway....high iron is as bad for the liver if not worse than alochol with this hepc and is very common with hepc patients. The ferritin is where the body stores the iron, if it is to high before tx, it MUST be treated before tx is started. My husbands ferritin was 1006 before starting tx last time (didn't know till bought those records, I knew his iron was high)and the normal range for ferritin is 22-322 after tx is was 2092.5 New doc said he had never seen ferritin so high. These numbers are not a misprint. His new doc was on the team that discovered the hemochromotosis gene. These meds can also make ferritin increase. The test to check for hemochromotosis (genetic disorder that makes the body store to much iron)is called HFE gene type and it isn't done in very many labs so it is a send out test. Now my husbands alt/ast are 49/44 which are very good.....not been normal since 1997 that we know of....his doc at that time knew and ignored it..we found out after we paid for his records and got a look for ourselves. To much iron will cause liver enzymes to increase, to much iron is commonly the cause of cirrhosis with hepc and isn't being checked enough by some of these lame brains trying to treat this hepc. I am sorry if I seem like I am on a soapbox, but I get so angry when I think about all the people out there "practicing the art of medicine") that I could just scream!!!!! Go to google and type in hemochromotosis or iron overload and have a look at the symptoms, it is very interesting to say the least. You have to take an active roll in this because nobody else will have your best interest at heart like you will.....I wish you the best and I will keep my fingers crossed...good luck....let us know how this turns out for you.