NEW to this forum, HCV positive, going to start treatments soon and clueless

[vcusell]

Hello my name is Vanessa and I was diagnosed with HCV March 2011.  I finally got my insurance and went seen a gastroenterolist.  Well I did all the bloodwork and today when I seen him he told me that I have genotype 1a but my viral load was 13,000.  He pretty much told me that genotype 1a is the hardest to treat but that the good thing was my numbers were so low that I have a pretty good chance of getting rid of it.  He mentioned me starting inferion shots once a week plus pills I would have to take every 8 hours.  I'm not exactly positive but im sure it was incivick and boceprevir.  He mentioned tons of side effects.  I was just wondering if anyone has gone thru any of the treatments I will be facing soon and what I should expect physcially? I am a waitress and am wondering if I would be able to work while undergoing treatment or if I should take a leave of absense.  Any advice for me?? Thanks!

[ActingBrandNew]

Here is a thread on this site that addresses your question about being able to work as a waitress. I hope its helpful.

http://www.medhelp.org/posts/Hepatitis-C/Anyone-work-in-a-resturant-on-treatment/show/1870042

[orphanedhawk]

You should not jump into treatment. Demand to know more about the condition of your liver first. If your liver is healthy, stage 0-1 you may want to wait for better treatment options which are currently doing well in clinical trials. Or you may consider doing a trial.
Many many people have done this treatment but you should not start until you are more informed.

Here's a good web site to start with:
www.hepcadvocate.org

It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.

Questions for the doctor:

How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?

http://www.medhelp.org/posts/Hepatitis-C/Going-back-in/show/1785793#post_8220897

Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?

[pooh55811]

"I have genotype 1a but my viral load was 13,000.  He pretty much told me that genotype 1a is the hardest to treat but that the good thing was my numbers were so low that I have a pretty good chance of getting rid of it."

Genotype 1a is the hardest to cure but, with the triple medication treatment, there is about 75-80% chance of cure depending on various factors. Have you had a liver biopsy to determine the amount of liver damage that you have (if you have any)? The state of your liver is a primary factor in determining how urgent it is to treat.  You are young so that goes in your favor.


"He mentioned me starting inferion shots once a week plus pills I would have to take every 8 hours.  I'm not exactly positive but im sure it was incivick and boceprevir."

The treatment guidelines for treating Genotype 1 are Interferon injections weekly, Ribavirin tabs twice a day, and a Protease Inhibitor (either Incivek or Boceprevir) every 8 hours. Therefore you would be taking Interferon injections once a week, Ribavirin tablets twice a day, and EITHER Incivek OR Boceprevir every 8 hours.


"He mentioned tons of side effects.  I was just wondering if anyone has gone thru any of the treatments I will be facing soon and what I should expect physcially?"

There is no way to know which or how many side effects you will have. The side effects vary in intensity and in type. Some people have few and/or mild side effects, whereas others have more serious and/or more (in number) side effects. However, most people have some side effects. Some of the most common side effects are flu like symptoms, fatigue, lack of energy and lack of motivation, brain fog, rash, itching, gastrointestinal problems (nausea/vomiting/diarrhea), anemia, depression, mood problems, other blood count problems, and others. You may not get all of the side effects. Probably you will get some of them. Hopefully they will be mild, but you should be prepared that they may be more severe than you would want them to be. Be sure your doctor knows how to treat them and is willing to treat them. If you can keep the side effects under control, often with prescription medications, the treatment goes much more smoothly and is not as bad as if the doctor ignores the side effects or does not know how to treat them. The key is to get on top of side effects like rash, depression, lowered blood counts, etc. right away, as soon as they appear. Then treatment will be easier. As far as the more minor side effects, you cannot do a lot about the flu like symptoms or fatigue or headache or brain fog except to slow down, rest as needed, get up slowly, make lists and reminders, tylenol for headache and aches if okay with your doctor, cut out non-essential appointments and events, take it day by day. The Protease Inhibitors have different side effects so once you know which one you will be on, post and we can tell you more about it.


"I am a waitress and am wondering if I would be able to work while undergoing treatment or if I should take a leave of absense.  Any advice for me??  "

Many people do work while on treatment but many cannot work.  Waitressing can be pretty tiring. You won't know until you start how the drugs are going to affect you. Plus, the side effects have a tendency to wax and wane. You might feel decent one day but feel like crap the next. What I would suggest is to have a few back up plans. If Plan A is to work, then have a Plan B in case you find that you cannot work. Look at various options: sick days, vacation days, short term disability or leave, Family Medical Leave, leave of absence, part time, shorter days. I could not have worked on treatment but, like I said, many do work. A lot of it depends on the type of job you have and, of course, on which and how many side effects you get.


You did not ask about this but I will tell you anyway. I looked at your profile and you say that you have been trying to get pregnant and that you want to get pregnant. I understand this desire. However, you MUST NOT get pregnant on these Hep C drugs. Ribavirin can cause major birth defects. You MUST NOT get pregnant now or during treatment or for 6 months following treatment. This is a must. Your 2 doctors should be in consultation with each other. Does your Hep c doc know all of the drugs that you are currently taking. This is very important. You and your boyfriend need to be using TWO types of reliable birth control. Hopefully your doctor has explained this but in your posts it does not seem like he has.

"Ribavirin may cause serious birth defects and/or fetal death when used during pregnancy. It should not be used by women who are pregnant or by men whose female partners are pregnant. Women of childbearing potential who either take ribavirin or are sexual partners of men who take ribavirin must:

    have a negative pregnancy test immediately before therapy with ribavirin is started.
    avoid becoming pregnant during therapy with ribavirin or within the first 6 months after ribavirin is stopped.

At least 2 reliable forms of effective birth control must be used during treatment with ribavirin and for 6 months after treatment with ribavirin is stopped"

Do NOT use ribavirin if:

    you are pregnant or planning to become pregnant while you take ribavirin or within 6 months after you stop taking it
    you are a man with a female sexual partner who is pregnant or planning to become pregnant while you take ribavirin or within 6 months after you stop taking it
    you are breast-feeding
  
Before using ribavirin:

Some medical conditions may interact with ribavirin. Tell your doctor or pharmacist if you have any medical conditions, especially if any of the following apply to you:

    if you are pregnant, planning to become pregnant, or are breast-feeding
    if you have a female sexual partner who is of childbearing age

Important safety information:
    At least 2 reliable forms of effective birth control must be used during treatment by men and women who take ribavirin and for 6 months after ribavirin is stopped. Men who take ribavirin should use a condom with spermicide as 1 of the 2 forms of birth control.
    Women of childbearing potential who either take ribavirin or are sexual partners of men who take ribavirin must have a pregnancy test before therapy with ribavirin is started, monthly during therapy, and monthly for 6 months after ribavirin is stopped.

http://www.drugs.com/cdi/ribavirin.html

Read more at http://www.drugs.com/cdi/ribavirin.html#wvKlgqU1ZogWAve3.99

[vcusell]

thank you very much for your answers they were all very helpful! we put the baby making on hold I wanna be as healthy as possible before we try again for a baby.  Thank you all I am so new to this and your answers were helpful

[rambleon40]

oh goodness if you are not treating make some babies!   HCV won't stop that.    :-)  Have fun ... uh, I mean, good luck!

[judywallace5]

Good advice!   I didn't start tx after the first biopsy and after the 2nd I found out my liver stage went from 0 to 2, a different area was biopsied after an MRI.  My grade went from 0 to 4 (but I can't remember what that means (or most likely, I probably forgot).  I am only 4 1/2 weeks in tx but I would tell anybody who asked to not start tx before getting all the facts.  You said that it is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist."  I only have a GI and after my questions found that he treats 88% of hcv in our city.  The county health department treats the rest.  Should I also be seeing a hepatologist?

[wyd2013]

I would agree with those saying don't jump into it head on, but plan carefully and get prepared. Don't know if I'd advise waiting for new meds though - living with hep c and waiting is little joy.  I'm still rejoycing after finishing triple therapy tx undetectable two months ago (Gen1b, needed only 24 weeks with Incivek, was UND from week four onwards). I'd say that if you decide to go ahead, don't rush, plan well, but don't delay, either. Get all the best qualified help and support you need. Here's what worked for me:
- Get support from your family, first of all, make sure they will be available to help you when and if the going gets tough and make sure they are prepared for your bad tempers, etc. - and have a plan for dealing with it.
- Reduce workload if you can. I arranged for working from home, which was excellent, no office pressure, etc.
- Have a hepatologist by all means to monitor your condition, and don't blindly trust even your hepatologist, always double check information on the net and even have a contact for a second opinion if possible - you may need it, if your body does not respond well to treatment and your doc is unwilling to correct dosages, etc. Having investigated the treatment topics in great detail, I actually observed on a couple of occasions that even my hepatologist actually lacked knolwedge on some points.
- CONSIDER GOING ON AN ANTIDEPRESSANT - I think this was the smartest decision that carried me through tx with relative ease. Before starting Tx, see a psychiatrist/psychotherapist to potentially monitor you for depression. I'd had a moderate depression many years ago, and feared it might come back. My hepatologist initially suggested citalopram 20 mg into the second or third month of tx, if needed - and I actually did well to see a psychiatrist for a second opinion. She prescribed the newer and better tolerated escitalopram and put me on a minimalist 5mg about a month before starting tx. And even this dosage caused phasing-in side effects (feeling jittery and restless) for two weeks. I did not need the dosage increased during tx at all, as I was feeling well, and now I am going  through withdrawal symptoms after discontinuing cold turkey (some brain zaps, which should cease soon ). I can image where I'd be now if I had started on the four times the dosage right away in the second month of triple therapy...
- Try living your treatment routine before starting treatment. What worked for me was actually getting into the rhythm in advance - waking up and going to bed at the times dictated by the treatment protocol,  eating the high-fat foods for a week or so before starting tx, learning to prep food for the night, so the night dosage can be taken already in bed, to give you more rest, etc. Actually the change is diet and daily regimen is very significant when you go on tx, you'd better do some training. Buy a weekly dosage dispenser, so you don't have to worry about missed pills, buy a portable fridge to keep your IF when traveling.
- And of course, do the mental preparation,prayer, positive imagery, imagine yourself healthy. When you have symptoms, try to compare them to some other conditions you have experienced in life, like real flu, bad toothaches, backaches etc. Focus on the positive. Whenever I felt weak (and there were only three days when I did feel bad), I realised that this did not feel any worse than a good old  hangover. And the low grade fever I'd get on Mondays (after IF injection Thursday night), was never worse than any real condition involving fever. Also had haemorroids and diarrhoea while on the fat diet, but well, one can live with that - imagine the people who live with this for years due to permanent digestive disorders, etc. Same for skin itching, it's a nuissance, but manageable. This is not the worst suffering one can have in life. So, if you stay positive and have a reality check and don't panic, the chances are you'll pull through the treatment and get rid of the virus for ever.
- While on treatment, take plenty of water and rest, of course, there are many good tips on this forum and others, investigate everything you can.

As for waiting for new drugs, it may be worth waiting, but please bear in mind that you're chances are better while you're young, your immunity is strong and your liver still undamaged. And it's hard to know if any new meds will guarantee a carefree quick cure from this virus. Going on trial meds is a pure gamble, imho, as compared with the approved thriple therapy.  

I had actually waited for five years for the triple therapy (Curing Gen1b with IF+Riba had a success rate of only 48 pct, so I skipped it, but triple therapy has a success rate of like 70 pct, and my hepatologist said it's even higher if you're young (I'm 38), your liver is still good (mine was grade 2-3 fibrosis, but with elevated enzymes) really disciplined to follow the protocol, don't skip dosages, take the 20g fats, always at the same time, etc), and it really worked!

Best of luck and God bless you!