Just started Copegus

Hi, I'm Raven and I'm 22 and this is my first post on this forum considering I just found it tonight.

A year ago my mother (who will be 55 in July) was digonosed with Hepatitis C and she doesn't want anyone to know, but I need to talk to others who may have it, or have family members who have it so I can tell her things and perhaps not be so worried and stressed out myself.

This past friday she just started treatment, Copegus and Pegasys (I gave her the shot friday night in her thigh) and she hasn't had any side effects from it yet, as it's sunday night and she's worried.

Also since my mother started the pills and injections she's been drinking like 64 oz of water a day and she's constantly getting up to go to the bathroom like every five minutes, I don't suppose there is any alternative to this cause she complains about it so often.

I actually do have a question - my father and I were both tested for Hep C and came up clear, but is it possible it's somehow hiding and if I get a test years from now it could come up?

And I just wanted to say, I am so happy there is a community for this, I even printed out some of the things for my mother to read, because she's so stressed out lately.

Thanks.

[scruffy]

One of the best things you can do for your mom is get her to come to this forum herself-at least to read if not post. There are a lot of people here in her age group but more importantly they are in her shoes regarding hep and treatment. I would'nt worry about testing positive later if you are clear now-it is unlikely that would happen. Get your mom to at least read some stuff here and I'm sure she will find a home and a lot of support. frank

[scruffy]

You're a good kid!(I'm 56 so you're a kid).

[Soleus]

High Raven and welcome to the forum. Like scruffy says bring your Mom here too, you can post together.

It’s very unlikely you have it if you tested negative but you could test again in a month or so just to make sure. One thing though you shouldn’t make a habit of giving her the shot because of the small but real risk of you sticking yourself. You guys are lucky to have each other I’m sure she’ll do fine with your help.  

[bluepeng]

I thought the same thing Scruff!  What a good kid .. and I'm 42.  Seriously, somebody else suggested getting your mother to this forum .. that's an excellent idea.  Having to get up several times a night to go to the bathroom is normal from what I've heard.  I got up 5 times last night!  It's very aggravating and I'm tired of stubbing my toes staggering to the bathroom half asleep.  You may also want to consider having her learn how to do the injection.  However she gets the medication really isn't important, if it's you or her giving it, but having her do it may free you up a bit from being so tied in.  

I hate how this disease drives people underground because nobody wants to tell anybody they have it.  I'm the exact same way.  I haven't told many people.  The shame factor is disgusting ..  it doesn't help people get well and there should be no stigma with having this disease.  

All the best,

Peng.

[doll face]

Your mother is very lucky in having  such a wonderful caring child.

I do have to agree though that you need to try to get her to come here. I know that you are trying to help her,but she needs to do some of this on her own, you can't and shouldn't be expected to do it all for her.

As far as the water, she needs to keeep that up. Sorry having to go every 5 mins is worth it. I slacked off on the water once for about a week and paid dearly, My kidneys hurt sooooooo bad and aches and pains every where were twice as had as when I was drinking the reccommended amount of water.

I however believein telling just about anyone about my hep C. I couldn't believe how ignorant most people are of this disease (myself included) until I learned more about it, and was able to educate more people. But that is just my opinion.

I wish yoour mother all the best with her treatment and hop that she joins us here.

Kim

[cuteus]

your mom is such a blessed woman to have you taken on the role of a caregiver with such confidence. You seem to be doing just fine.

The water intake has to be increased as suggested, but Pegasys does not get processed the same as pegintron, so the water need is not the same.  Find the proper level of water intake for her, it is not the same in everyone and too much water can create a mineral imbalance.
You really can not be drinking gallons of water because the boards are clamoring for it>
I found a site the other day on reccomended water intake and the dangers of excessive intake, but can't find the address. You could try a web search on excessive water intake to determine what is safe for her.  I could only muster 8 glasses a day during treatment.

[Celtic Raven]

Thanks for saying I'm so caring, because it's true, my mother means a lot to me.

As for getting her on here, I would, or rather, I'd read the things to her, because she doesn't know how to use a computer, nor can type very well so in fact I just read her your responses and she said she practically wants to cry. Although she is getting a computer soon, so perhaps I can drag her to this forum and teach her how to join and all that.

She is standing here with me and said she had three questions:

1. Is anyone getting hot flashes? ( I know it isn't from menopause cause she already went through that.)

2. Also, will she lose some of her hair? Because that's what one of the doctors told her, and she loves her hair, so...

3. Has anyone taken Ensure while on the treatment? (One of the nurses suggested she drink that.)

I think one of the things wrong for my mother, is the fact she is depressed although being on Xanex - is there any other anti-depressant drugs that any of you are on and might suggest that would work and she'd not get addicted to?

Here is what my mother has to say (I have to type it for her cause she flunked typing in school and flunked it in summer school as well 'cause she cut class. Lol, bad mommy. ;D)

I get headaches that last all day and the two regular strength tylenol don't help - I want to pull my hair out.  Also, I'm very greatful that there is a community and that my daughter is able to find a place where I can find out more things about this disease and if she wasn't here I'd jump off the roof - just kidding!

Thank you guys for responding so quickly, my mother and I will definitely stick around on here, and perhaps when she gets her computer and gets it hooked up I'll get her on this forum.

[twotells]

Your mom is blessed to have such a caring and involved daughter.  The water and the late nite bathroom trips are typical for us who are on treatment.  I got chills and sweats for a couple of days after the first shot- this too is typical.  I don't believe xanax is an anti-depressant.  Most of us are on some type of SSRI (Selective Serotonin Reuptake Inhibitor) for depression- I take Paxil but most others on this forum are on other ones.  Tylenol does only a little to help with headaches and aches and pains, especially the limited amount we can toleate on this treatment due to liver concerns.  I haven't used Ensure but I have found small meals every 4hrs or so to help alot- yogurt is great and appeals to the altered sense of taste many of us experience.

God bless you and your mom,    Dave

[cuteus]

I  was able to eat ANYTHING I wanted, mostly sweets, while on treatment(tx) and did not gain or loose wt. If she starts loosing a lot of wt, then maybe a supplemental drink will help.
It was Heaven on Earth to eat Ben and Jerry and not gain!

I do think our internal thermostat goes out of whack a little while on Tx, I was very sensitive to cold, but remember waking up close to a sweat in the morning.

the hair; if it is long, like mine was, she will notice and it will freak her out when it starts falling, around wk 15.  Some cut it short during tx. I couldn't, so I suffered through the hair washes, then it slowed and stopped months later.  The hair thinned considerably, although no one noticed but me.  There were no bald spots, though.
Get a good pain medication for the aches, I insisted on Vicoprofen, and that helped me go the full length of tx, which in my case was 72 wks.
IT will be over in a few months and then she will  not remember much of the past year in tx. I know I have a hard time remembering how bad I felt. It is temporary and the benefits will be permanent.
be well

[scruffy]

I'm a guy and yet I did get hot flashes in early weeks of tx (TX stands for treatment). I also experienced some tough muscle aches in the neck and shoulders. Your sense of taste may or may not change-mine did. Ensure may help you get what you need. Ill vouch for yogurt also(I liked vanilla with my riba-copeg). As for the hair-mine thinned about a third to half but oddly was mainly noticable to me only. So not as bad as you'd think. Short haircuts help I think. I one finger type and have only posted on a forum since first coming here. It's time to help both yourself and your daughter for the tough road ahead. Best wishes to you, frank

[LvdByGod!]

hi raven say hi to your mom for me and tell her she needs to just type one key at a time...we will understand if she can't post long letters...well either way it's great both of you are here with us and you will find that the people here really make a difference to us when were going through the tough treatment...

RAVEN...be soooo careful giving your mom the shot....one slip up and you too will have it and won't be able to help her cause you'll need to be on treatment too...i would insist she learns how to give herself the shot...unless there is a reason she can't do that...like if she is mentally/physically challanged...etc...if you stick yourself she will never forgive herself...so be tough and help her learn how to give herself the shot...it's best for everyone...i'm the board "worry wort" so forgive me for nagging!!!

she is so blessed to have you...please stick around here with us and you will learn many things to help her...hope she can type us a hello too!!! now let's see she needs a cute screen name..."mommy bird????"...chirp! ~:>

sandi

[honey1616]

Celtic,,,,So glad you and your mom found your way here!  I just finished 52 weeks of tx so she is at a good spot,,,many already done and many going through.  Hot flashes in beginning for me also at night,,,Drove me crazy!  My hair thinned but noone noticed except me...Headaches sometimes did get bad,,,,Ibuprofen works for me and they soon passed after the first couple of months.  Itchiness was the worse part,,,,Try Aveeno bath moisturizing and then after getting out of bath,,,Use lotion on damp skin.  Seemed to relieve for awhile doing that!  Get mom started on her typing skills and on the computer,,lol   Honestly this will be her best medicine,,,Support!

[BronxRican007]

What a great daughter you are...and if your mom loves you as much as you love her...then she'll learn to take her own shots and not risk exposing you to the disease.

As for people at the job. It was extremely difficult for me to confide in anyone outside my family. After weeks of dancing around the subject, my boss just asked me a direct question about my medical problems and has been very supportive once he understood what I'm facing. Not all employers are the same but if you work with good people...they'll continue to be good people after you tell them about this disease.

Pray and good Luck with the treatment...God Bless you both!

[Celtic Raven]

I just wanted to make a quick post.  Everyone is saying my mother should give herself the shot - but thing is... I insist on doing it myself even though she's wanted to do it herself, but I kind of feel like I -need- to.

And yes I'll definitely stick around, and continue to read or print out the posts and give them to my mom.  At least till she gets her own computer and 'net and that way she can come on here herself.

And thank you guys, for the support. You're all amazing - I can see that already.

[chellski]

maybe if i got this in about 5 years my oldest would be like you; however at 17 she's living her life and enjoying it.  I get more "mothered" by my 14 and 11 yr olds!  God bless you for being such a great kid to you mom!   I am 48 and on my 5th shot; i get frequent hot flashes and joint pain. (You didn't mention itching - but maybe i shouldn't bring it up)
Xanax is not an AD but more like a mild tranq. (kind of what valium used to be)  i'm on AD - i take zoloft and i'm new to it because i was on wellbutrin which i found out thru this forum is NOT LIVER FRIENDLY!  the zoloft is not yet kicking in and i'm kind of on an emotional roller coaster.  I don't post often anymore but i'm here every day to read and absorb.  There's no place like it - its home.
u takin good care of ur mom kid! good karma!
<3 michelle

[chellski]

maybe if i got this in about 5 years my oldest would be like you; however at 17 she's living her life and enjoying it.  I get more "mothered" by my 14 and 11 yr olds!  God bless you for being such a great kid to you mom!   I am 48 and on my 5th shot; i get frequent hot flashes and joint pain. (You didn't mention itching - but maybe i shouldn't bring it up)
Xanax is not an AD but more like a mild tranq. (kind of what valium used to be)  i'm on AD - i take zoloft and i'm new to it because i was on wellbutrin which i found out thru this forum is NOT LIVER FRIENDLY!  the zoloft is not yet kicking in and i'm kind of on an emotional roller coaster.  I don't post often anymore but i'm here every day to read and absorb.  There's no place like it - its home.
u takin good care of ur mom kid! good karma!
<3 michelle

[Aubbie]

SOMEBODY loves their Mother, and GOD loves you both. HI and WELCOME, I dont know what I would do without finding this site and am amazed at everyone and their KNOWLEDGE, not to speak of experience!  TELL your loving mom I am 52 and starting medicine this week,  I am thinking postive and have to conquer this VIRUS. I have heard about all the water you have to drink, and I gotta weak bladder, so I might have to wear DEPENDS !!!! LAUGH GOTTA get some humor, but tell your mother good luck and  SHE will learn it all right here in this FAMILY.  THEY are the answer and GREATTTTTTTTT! What a nice daughter and tell your mother that I too have a great Daughter. KEEP in touch and GOD BLESS.  Aubbie

[LvdByGod!]

hi chellski how are you? i hope you're well...it sure is nice to hear from you...what's happening with you right now? hope you had a nice weekend...

[Celtic Raven]

Heh my mom has a weak bladder too. It's probably why she's running to the bathroom what seems like every five minutes.

[Celtic Raven]

Actually about the itching, do I dare ask where it was? Because just tonight my mother was complaining about her legs itching. I'm not sure what that had to do with though.

I think though, even if I was seventeen I'd be acting this way towards my mother, even though we often don't get along, but I still love her regardless. Although that isn't to say your seventeen year old doesn't love you - I'm just saying. :)

But I do wish you luck on your shots and hopefully you don't get bad side effects although this paper the Copegus company sent my mom said that -MOST- people get really bad side effects, and god it's so hard to convince her that she just might not have it that bad.

Plus, she doesn't think positively, which is driving me up the wall. I keep telling her to think that she will get better, but she has to keep saying how she may not, and all that. Bleh!

[akablue]

Hi Raven & Mom -
I just found this site, saw your post, and thought I'd respond.
1st, congratulations to both of you for being proactive in your treatment of this disease - studies show earlier treatment may help with knocking it.  2nd, I totally understand Mom's concern with not wanting to share this with anyone yet - due to possible stigma, reactions, etc. - and she's early in the process of dealing with it.  (I was pretty sure in early 1980's I had this, found out for sure in 1991-ish when test became available, did 6 mos Interferon tx shortly after as part of a clinical trial).  I also spent many years not sharing this with people, but have found that part of my healing process eventually was being able to open up to people about it.  Each person needs to process that in their own time.  3rd, as you are discovering, there are tons of resources available - including the ALF (American Liver Foundation - look for your local Chapter), Hepatitis Foundation International (HFI), Medscape - for more detailed medical info, and some good books - look in the bookstore under Health, Diseases and Conditions, etc.  

I will check the posts to you to ensure I am not duplicating info, but as far as treatment goes - Talk To Your Doctor, repeatedly, and about everything.  Do not be afraid to be a pest, appear uneducated, etc.  This treatment can be rough and it is important to address any potential issues that come up.  Depression, either related to treatment or preexisting may require a few tries with different medications to find the right solution.  Temporary hair loss may be due to thyroid function affected by treatment - I'm sure they are monitoring this, but make sure.  Nioxin is a shampoo many of us have sworn by for years to help with this.  At one time I someone was putting out a somewhat dry and humourous reference guide to dealing with treatment - I'll look for this and get back to you along with the names of some books and addt'l info.

Keep the faith and with the love and support it sounds like you guys are giving each other you can beat this.  More later. . .

[Bill1954]

Hi Raven & Mom;

This may or may not be the reference guide that akablue mentioned in the post above. If not, take a look anyway; lots of good info here.

http://www.hepcsurvivalguide.org/comboguide.htm

Best of luck to you both,

Bill

[toocute2tell]

Dear Ravin and Mom,
I am currently on the same treatment as your mother. I want to start off by telling you that I got hepatitis C by working in the healthcare and ACCIDENTALY got stuck with a dirty needle (gloves do not work as the needle will pierce right thru the gloves). It's not something that we expect to happen but, we can't be positive it won't. I think you are a wonderful lady for being so supportive of your Mom in her time of need. You said your Mom had said she wanted to try and give herself her shots. I think that would be very wise. I personally give mine in my stomach (I was so scared the first time but, my worrying was in vain because it was a piece of cake}. The hard part is the Copegus (that's your ribaviran...a form of chemotherapy). The Pegasys will not work without the Copegus. I think if you were to get stuck it would be more than your Mom could handle, and she is already going through a lot. The biggest fear I have is that I could give someone else this....especially my family. It will give her strength to learn to do things for herself. I just took my 11th shot on Friday (I also have to taking Procrit (on Thursdays) because, the treatment attacked my red blood cells.I take that in my stomach as well. You have to think about what she would do if she were in a situation where she had to give herself the shot and wasn't able to for fear of doing it wrong because someone else had always done it. You asked about losing her hair. They told me when I started that I probably wouldn't lose my hair but, they were wrong. A really good way to help your mom is to encourage her to excersize and drink Ensure. Don't let her become consumed with the disease. I did that at first and was on a pitty party and all that was doing was killing me. I knew I had to make a consious effort to fight and beat this Dragon but, it's because of the support I get from my family that helps me to get through it. Just short 10 min walks and getting out in the sunlight will help her emincely. Most people with this disease are solar powered. I know I sure am. A really good place to learn more about this disease is MSN chat groups. There is one called Pathlights and it's for people and their families with hepatitis C. You will find people who have just learned they have the disease and people in the very advanced stages of the disease and have been through many of the treatments available now. The time of day she takes her Copegus could also greatly affect how she is dealing with the medication. I found when I took my Copegus first thing in the morning and then at dinner time I do a lot better because, taking it at bedtime I was not getting any rest. To try and end this let me just say this. As I told you earlier that I am on my 11th week of 48 weeks and my last bloodwork came back and the virus was already undetectable and I am a genotype 1b (the least respondent to treatment). With endig let me just say this water, water, water, and more water. It's her best defense. Tell her I'm proud of her and her daughter as she obviously did a beautiful job raising such a wonderful young women. If you would like to email me I'm on msn's hotmail it's just tammyewest AT hotmail dot com. I would be happy to help in any way if you or your mother need answers or just someone who understands what you're going through. May God bless you.

[glfsunset]

How long before the nasty side effects begin? I took first shot on Tues along with thecopegus. Had chills ,fever. Is this something that builds up with every tratment it gets worse?