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Hep C Discussion Forum -> Post Treatment -> Treatment
Post Info TOPIC: Treatment
LanaiSurferGirl


Senior Member

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Date:
RE: Treatment
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wow...its good to know that others went through an experience like mine.   I got my hepatitis from my mom at birth too and found out when I was 18!  I went through the treatment the next year (back then it was 3 shots per week of interferon and daily doses of ribavirin).  That treatment didn't work but this second round will hopefully knock out the virus.

Anyway, that first time of treatment was durring my freshman year of college and I wore myself out with all of the medication regimen, athletics, social life, and studying.  It was a full 48 weeks of treatment.  There is never an ideal time for treatment but I wish I had done it my sophmore year rather than freshman when everything is so new. 

I agree too that if your numbers are so low then you can afford to wait a while til new and better drugs come out.  I went 9 months of treatment this round and it was no walk in the roses....it is very hard.

Keep in touch with your doc, get regular bloodwork and ultrasound/CT scans...whatever they want you to do to monitor the progression of the virus.

 

good luck,

Meghan



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
Joe P


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Hi Christina,

 

I completely understand what you are going through with this decision. When I was diagnosed in 2005, I was 18 and my senior year of high school. It was a blow to me mentally, but I had a wonderful support system with my doctor and my parents.

I did not want to do the treatment, as the Hep C virus was in its very infant stages and I had also contracted it from my mother at birth. The worst part was I had a scholarschip to play baseball and my doctor insisted that I do the treatment because there was a very good chance of eliminating the virus completely being young and vital. He also kept showing me pictures of a patient who was a successful boxer who took the medication 3 times to beat it and came back as a winner which was motivating. He had told me stories of older people taking the treatment multiple times, because the symptoms were so bad that they could not complete the full cycle as well.

With that in mind, I decided with great influence to take the medication while playing my freshman year of baseball. Needless to say, I was very down during this time. I lost a lot of weight, felt depressed and lost confidence because I did not speak out to my coaches or players that I was taking this medication for Hep C and my abilities to run, lift weights, and compete effectively had been diminished. I regret this decision now but at the time I felt very insecure. This was a very depressing time.

My advice would be to enjoy your college life and wait to take the medication especially if you have a to compete at a high level as I did. You will still be young and vital at 23 and you will be able to manage it better. I hope this helps and best of luck in what ever decision you make.



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spinningchels


Newbie

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Hi Christina, 

Deciding to do the treatment is totally your decision! I'm glad you've worked it out with your parents and they understand that. I have a very similar situation to yours and would love to tell you my opinion on treatment.

I also got Hep C from my mom- mine was at birth. I also hadn't ever had symptoms, and very little damage to my liver. When I was 21 I decided to go ahead with the treatment, since the rates of success with the treatment had gone up with new drugs. My doctor said that my chances were even better because I was young and healthy.

So this past January I started treatment. I was in my 4th year of college, had a part time job, and I'm an avid climber and hiker. I was worried about the side affects and not being able to keep my life in order. To my surprise, the side affects were very manageable. I would feel down on Sundays when I took my injection, but I just called those movie days. And the nausea and headaches weren't bad enough to stop me from my course work or a social life. I did miss class every now and again, but all of my professors were understanding and allowed me to make up work. After 4 weeks, I was undetectable. I just finished treatment last week, still undetectable and hopeful that I will stay that way. 

It's totally your decision when to do treatment, but in my case I'm so glad that I did it before the disease progressed any further, and while I was young and was able to handle the side affects better. Now (as long as I stay undetectable) I will be able to live my life without always worrying about Hep C.

 

Wish you the best!



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Cinnamon Girl


Guru

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Hi Christina, a warm welcome from me too! smile I`m glad you found us, do please make yourself at home here, it would be nice for us all to get to know you too.

It must have taken courage for you to stand up to your parents over this but, as Steff said, you are old enough and intelligent enough to make your own decisions about something so important.  I agree with the others that you have plenty of time to wait for new and better drug therapies while you concentrate on working towards your future career.

I can`t help wondering why your parents have been pushing you into tx while you`re at school and your studies are so physically and mentally demanding.   I `m sure they must have had only your best interests at heart but thank goodness you have done your own research and have been able to give them the facts, which they have now taken on board.  Sounds like a huge weight has been lifted off you now! biggrin

All the best of luck with your studies, and enjoy your time at college!

~ Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Christina


Newbie

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Thank you all so much for your responses. I called my parents(they are out of town) this morning and told them everything I have learned about symptoms and I read all of your responses and with the news drugs(which sound much more pleasant) coming out they said in the end it is my decision and they completely understand if I don't want to do it now. They have never been like that!! Every time I've brought it up in the past we got in a fight over it and then dropped the subject. I have been losing sleep and my hair has literally been falling out from how stressed I have been over this. Even though it looks like I won't be doing it now(yay!!!) I would love to have some hep c friends to have so I will definitely stick around here. Thank you so so much. I can't even put into words how relieved I am the nightmare is over. I was so worried this would ruin my friendship with my parents. All is well again and I can't believe it. Thank you thank you thank you!! I think you all are really brave for fighting the virus and doing the treatment. I look up to all of you, I really do.

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greenqueen


Guru

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Hi Christina and a very warm welcome smile

I can only second what Dave and Brad have said about your situation and you sound well informed and mature.

You are an adult and nobody should be forced or coerced into doing tx. Your parents are obviously worried, but it sounds as though they need a better understanding of Hep C and the treatment it involves.

If you can show them some facts to alleviate their concern, then maybe they'll stop trying to pressure you.

Love Steff xx



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
krowdog


Senior Member

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Hi Cristina.

Like Dave said, the disease is very slow moving in the vast majority of people.  I had mine almost 30 years, and was only a stage 2, grade 2  at the start of treatment (This is on a 1 to 4 scale, and refers to the amount of scarring, and inflammation).

Also, these newest drugs Dave mentions  may have even higher success rates, and appear to have almost no side effects.  The currently used ones can be quite brutal, and can even cause some permanent side effects.  These new drugs are in clinical trials right now, and many people are guessing about two years until their release.

We actually have one member on this forum in that trial. He went undetectable very quickly, and has reported only very minor side effect.  His nick is JIme.

He started  a journal here on the forum.  You can find it by scrolling up to the top of the page, and in the middle of the long blue bar is the word "search". Click on that. and type in "7977".  That is the name of the new drug, and it will bring up his journal.

I cannot make any suggestions, but I can tell you what I would do:

1:  Study , and get every bit of info on Hep C, and treatments I could.

2:  Keep a close eye on my liver, and general health.

3:  Then, I'd most likely wait on treatment, finish school, and then start TX  when the new drugs came out.

You sound quite level headed, and I agree with your ideas.

  I wish you the best in all this,

Brad

 

 

 

 



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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
davesf


Senior Member

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Hi Christina,

HCV for most people is a very slow moving disease.  If your physician and you agree that your liver is healthy and your condition is not deteriorating there doesn't need to be a rush to treat.  I was diagnosed 20 years ago and we have simply tested and watched my liver ever since.  I decided to finally do treatment this year as the new drugs had increased success rates to 80-85%.  However there are new drugs coming down the pipeline in the next couple years which may be even more successful with much less side effects.  Part of me wishes I had decided to wait a little longer.

All the Best,  Dave



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Christina


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Ok I know I should probably be in another area but I really need some people who have done the treatment to help me out--I am 18 years old and have hep c. I got it from my mom when I was a little girl because my parents told me not to use her razor and...that's exactly what I did(oops). I start college in the end of august and I am also training to become a collegiate horseback rider. I have to maintain a job because I owe my riding instructor over $1000 for a saddle and other things. Starting with school--I struggle a lot. I am no academian and it is tough and requires full attention. After I am done at my two year school I plan to transfer to an out of state private school that we will only be able to afford if I can get a really good riding scholarship which I have to be jumping 3 feet or higher to get. currently with my horse I am on cross rails which are about 6 inches(I just started jumping again about a year ago after a really long break. My life is just go go go as you can imagine. I am very healthy. My "numbers" are really low Nd other than the hep c I'm as healthy as a horse Also, I have been with my boyfriend for four years and we have really worked hard to maintain a relationship and plan futures so that we can stay together. It has not been easy. Even though we aren't going to the same school we are going to schools close together. My hep c has never ever given me trouble but all of a sudden my parents want me to do the treatment. I need some people who have gone through with this to pretty much tell them what a bad idea it is to start it now when my hep c is no danger to me. If I stop riding at this point with only 2 school years to catch up I mine as well quit and college grades only transfer if they Re A's and b's. My parents are really adamant on this but so am I. I know this isn't the right time and honestly I have a really bad feeling about it. I am willing to pack up my bags and move out if I have to but I love them and they are my best friends and I don't want that to happen. I want this nightmare to be over and I have come up with a compromise I think is fair--I think if they don't try to force me into it now while my life is going at light speed that we could monitor my liver as much as they want and if there is the slightest elevation I will do the treatment without a second thought. Please help me show them that now is not the time to be doing this. I have done my research and I know the side affects. I have watched blogs and read medical websites and I know most importantly I'll probably have to postpone school and riding which will ruin everything I've worked so hard for. Please help. Thank you so much, Christina

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