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Finally doing hep C treatment. Have questions...

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Posted 10/2/2010 3:29 AM (GMT 0)
Hi I found out I have hep c about two years ago and I have been in denial until my last blood work showed my liver enzymes #'s doubled and my hep c count went from 0 to 15K. I kept drinking every day and taking Tylenol and eating junk: all the bad stuff.

So, I am finally going to follow through with treatment (of course I quit drinking etc). I have to get a liver biopsy and I have been crying all week thinking about it. I am very scared. I feel like I am going into a POW torture session. I know they are going to hurt me and tear apart my insides WHILE I AM AWAKE. Also - the thought of me having cirrhosis or some other such result is scary.

Does anyone know what the hep c treatment is? I read online about PEGASUS and it said they are shots. Is this once a week? Where are the injections supposed to be on the body? Do people usually get sick from it? For how many months is the treatment? Does it "cure" hep c?

thank you in advance
btw - i am a 33 year old female


cry
Posted 10/2/2010 6:33 AM (GMT 0)
I haven't yet had treatment for my hepatitis, but I did have a biopsy and I can tell you that (for me) it was much less painful than anticipated.  The needle looks intimidating, however I didn't feel it at all, and the biopsy itself was over in seconds. 

The next day I had some soreness in my shoulder, but it was completely tolerable.  Thanks for sharing your story.  I hope all goes well for you. 

Posted 10/2/2010 6:39 AM (GMT 0)

Hi, Disectx, and welcome to the forum.  First of all, read the information in the folder at the top of the page entitled Hepatitis Resources.  Read through some of the posts here.  Knowledge is power.  It's good that you stopped drinking.  You cannot have anything at all alcoholic as it would be like pouring fuel on a fire.  Avoid red meat.  Eat a lot of fresh fruits and veggies, no fast food unless it's a salad.

The current hep C treatment is known as "the combo."  It combines Interferon and Ribavirin or some similar combination (Pegysis is peginterferon alpha 2a.)  It is normally taken for 48 weeks.  However, if it is having no positive effect on your liver enzymes at 12 weeks, you will be taken off the treatment.  The injection is once a week and the pill (ribavirin) is taken 3 x a week, I believe.  It has a better chance of clearing the virus than interferon alone.  Some people have really bad side effects (weight loss, nausea, hair loss, etc.)  After all, it is chemotherapy.  There is a new treatment which adds a 3rd drug, expected to become available in the first half of 2011, that is having much higher success rates on genotypes 1a and 1b.

I do want you to know that a viral load of 15,000 is considered low.  Mine is 68,000 and Mayo considers that low.  There are patients with viral loads in the millions.  However, this is not an excuse to drink!

Regarding the liver biopsy, they are not going to "tear apart your insides."  They will give local anesthesia to the biopsy site.  They then use a large bore needle which basically punches a small piece of tissue from your liver (it looks like a small worm.)  It is over in seconds.  I was terrified of having this done, too.  For my first biopsy, I was given no medication at all--no tranquilizer, etc.  I did have a bad backache afterwards, but they gave me a shot of Demerol that totally took away the pain for the entire day.  I was slightly sore the next day and took the day off from work, but after that I was fine.  My 2nd biopsy was done when I was under anesthesia and having the rt. lobe of my liver removed.  They biopsied the left lobe and found cirrhosis.  I didn't even know that biopsy was done until I read the surgical report.

So take deep, slow breaths and calm down.  Learn as much as you can about hep C and treatments for it.  Learn about liver disease in general. 

Good luck with your biopsy.  Please keep us updated on your progress!

Hugs,

Connie


Posted 10/2/2010 1:15 PM (GMT 0)
I did read the liver disease sticky and I read many of your posts. Do you know where the injection has to go into the body? Am I going to have liver disease forever? After the treatment do I have to get monitored for the rest of my life?


Also - If you don't mind me asking: Why did you have cirrhosis in your liver? Is it because Hep C still attacking your liver? So I can do the treatments but hep c is still going to eventually destroy my liver?

Thanks

Post Edited (dissectx) : 10/2/2010 7:31:36 AM (GMT-6)

Posted 10/2/2010 2:27 PM (GMT 0)
Hello dissectx I just wanted to welcome you to HealingWell. We have lot's of members that are dealing with Hep C and have taken treatments. I'm not an expert on it so I will live it to them to answer your questions concerning it.

Just hang in there and do everything in your power to fight this disease.......You aren't alone you now have a whole big cyber family to support you in your journey........ Take care...thoughts and prayers.......
Posted 10/2/2010 6:16 PM (GMT 0)

Disectx, the injections (you will do them yourself) can be given in the tummy or the top of the thigh.  The idea of treatment is to clear the virus.  about half of people who do treatment relapse.  However, the new treatment coming next year is showing a higher clearance rate and lower relapse rate.  They don't call it a cure because there is the chance of relapse--even after a transplant.  But treatment is your best chance of clearing the virus from your system and avoiding liver cancer and liver failure.  When I was first diagnosed, the only treatment available was Interferon injections 3 x a week.  The first time, I did them for about 8 weeks, but my white cell count dropped so low that I was taken off treatment.  I tried again a few months later, and the same thing happened.  So I haven't tried again, and the hep C progressed.  Now they have meds to give for low white count and other side effects of treatment.

My cirrhosis was caused by hep C.  At the time I was first diagnosed in '93 and had a biopsy, I had no cirrhosis, despite the fact that I drank alcoholically for years.   However, I had quit drinking 7 years prior to hep C diagnosis.  I went on to develop liver cancer in '05.  This was also from the hep C.  I had treatment for the cancer and then excision of the rt. lobe.  At that time, they biopsied my left lobe and it showed cirrhosis but no cancer.

So I urge you to try treatment.  After you complete treatment, they will check you frequently to make sure you haven't relapsed.  At probably the one-year mark, you will likely have blood work about every 6 months to make sure you continue to be free of the virus (if treatment worked for you.)  Others who have completed treatment can verify this or tell you more.

Hugs,

Connie


Posted 10/2/2010 10:29 PM (GMT 0)
I have had 3 liver biopsies and none of them were painful. Most people do have side effects. Most of those I've spoken to were sore later that day, or the day after. My most recent biopsy took place 3 weeks ago. They knocked me out, so it was easy. The first 2 didn't hurt, but when they took the biopsy, it felt like an electric shock that wasn't near the site. It wasn't painful, just weird. Ask for a sedative if you're nervous.
Posted 10/3/2010 12:30 AM (GMT 0)

hep93 said...
Disectx, the injections (you will do them yourself) can be given in the tummy or the top of the thigh. The idea of treatment is to clear the virus. about half of people who do treatment relapse. However, the new treatment coming next year is showing a higher clearance rate and lower relapse rate. They don't call it a cure because there is the chance of relapse--even after a transplant. But treatment is your best chance of clearing the virus from your system and avoiding liver cancer and liver failure. When I was first diagnosed, the only treatment available was Interferon injections 3 x a week. The first time, I did them for about 8 weeks, but my white cell count dropped so low that I was taken off treatment. I tried again a few months later, and the same thing happened. So I haven't tried again, and the hep C progressed. Now they have meds to give for low white count and other side effects of treatment.

My cirrhosis was caused by hep C. At the time I was first diagnosed in '93 and had a biopsy, I had no cirrhosis, despite the fact that I drank alcoholically for years. However, I had quit drinking 7 years prior to hep C diagnosis. I went on to develop liver cancer in '05. This was also from the hep C. I had treatment for the cancer and then excision of the rt. lobe. At that time, they biopsied my left lobe and it showed cirrhosis but no cancer.


Hugs,

Connie



You got cirrhosis even with your low hep C count?
Posted 10/3/2010 2:02 AM (GMT 0)

Yes, I did.  The hep C did that. 

Hugs,

Connie

Posted 10/6/2010 12:09 AM (GMT 0)

Smileshelp, I'm sorry you were a nonresponder.  Has any consideration been given to your trying the new treatment?  It is supposed to be especially effective for genotypes 1a and 1b.

Hugs,

Connie

Posted 10/18/2010 12:06 AM (GMT 0)
IT WAS JUST AS TRAUMATIC AS I EXPECTED. I AM NEVER HAVING A LIVER BIOPSY AGAIN. I AM MOVING ON TO ALTERNATIVE METHODS.
Posted 10/18/2010 12:49 AM (GMT 0)

Dissectx, I'm really sorry to hear that.  Did they give you a tranquilizer prior to biopsy?  Or pain med afterwards?

I do want to caution against OTC meds and liver cleanses.  You could do yourself more harm than good.  Better to do nothing than mess around with treatments that are possibly harmful, or at most will do no good.

Hugs,

Connie


Posted 10/18/2010 12:37 PM (GMT 0)
Of course it was traumatic. You expected it to be and therefore it was. That's known as a self fulfilling prophecy.
Posted 10/23/2010 4:26 AM (GMT 0)
Hi I'm new to the forum and I was suppposed to do an injections today, but My doctor would like me because I need to see a psychiatrist because I depression and anxiety and I have to be monitored. I have alot of other medical issues as well.I have fibromyagia, diabetes, and Ibs, lucky me. Has any had this experience? thanks mimi3028
Posted 10/23/2010 4:54 AM (GMT 0)

Hi, Mimi, and welcome to the forum.  It is best if you copy and paste your post into a new thread or just start a new one (hit New Topic instead of Reply) to introduce yourself to others and to get the largest response to your post.  Sometimes new people who post on another person's thread get overlooked.

I guess you are saying that your doctor wants you to wait until you see a psychiatrist before starting the hep C treatment?  It's normal for people starting treatment to be prescribed antidepressants as that is one of the common side effects of the treatment regimen.  In your case, with an existing diagnosis of depression, it would be even more important that you are on sufficient antidepressants.  Having diabetes and other ailments also can make treatment more difficult for you.  These are things you need to discuss with your doctor or psychiatrist.

Hugs,

Connie

Posted 10/23/2010 3:18 PM (GMT 0)

**David** said...
Of course it was traumatic. You expected it to be and therefore it was. That's known as a self fulfilling prophecy.


Thanks but no I was hoping that they would give me enough sedation that I wouldn't care what was going on which is why I went through with it. Your words are soothing thanks.
Posted 10/23/2010 6:30 PM (GMT 0)

Dissectx, the reason they can't really drug you up for a biopsy is because they need a toxin-free liver in order to get a true reading.  I'm sorry it was so difficult for you.

Hugs,

Connie

Posted 10/25/2010 2:44 PM (GMT 0)
What was traumatic about the biopsy? Was it painful?
Posted 10/25/2010 4:06 PM (GMT 0)
I'm sorry that the biopsy was such a bad experience for you. My husband has had several and has said that they don't hurt at all. He just experienced a slight feeling of pressure or something like that.

Sometimes we can work ourselves up so much over things that we are actually making things harder on ourselves. I'm not a person dealing with the disease. I am a caregiver. But I know I have worked myself up over my husband having liver disease so much that it was consuming my life. I have learned to take it a day at a time and to not always look for the worst.

My thoughts and prayers are with you.
Posted 10/25/2010 6:46 PM (GMT 0)
sorry it was panful there dissectexxx.... kinda like when had my kids... I wanted them to dope  me up... so I wouldn't have any pain... and wake me up when it was all over... fortunately none of the above happened... cuz it wouldn't have been good for the babies... but I understand where u r coming from... Mike had that done... and didn't have the trouble u did... that's too bad ... Sandi
Posted 10/27/2010 7:27 PM (GMT 0)
I hope the questions I ask are not stupid. I'm trying to learn as much as I can but all I can talk about is what I have experienced in my own treatment. Connie you are so knowledgeable on the subject and I have learned a lot from your posts. I read all the post everyday and everyone has good feedback. I'm learning from other people that have experienced it and can tell me what to expect or do or medicines to ask my Dr. about. I've been dealing with this on my own for over 4 years and fear of the unknown was holding me back. Thank you all for your feed back. I'm so glad I'm not alone anymore. Question what is genotypes 1a and 1b? I have ESLD and it seems like Dr.'s are treating this differently on a case by case situation. I don't have Hep. I have cirrhosis due to alcohol and tylenol toxicity and it has advanced from there. It now has included my heart and lungs. I have Pulmonary arterial disease and am on oxygen 24/7. about the biopsy. When I had mine my Dr. told me he couldn't give anything for pain or sedation because I had to be awake to follow his order like when to breath and when to hold my breath. I do have good and bad days so if I ever post anything inappropriate please forgive me that's a bad confusion filled day and some times I don't know what I'm doing and when I find out I'm so embarrassed so apologize in advance. See I'm rambling. Thanks to all of you for teaching me I have learned so much since I found this forum.
Posted 10/27/2010 9:22 PM (GMT 0)
Just as there are different types of hepatitis viruses, there are also a few different types of the hep C Virus itself. Though they all cause

 hep C each type of the virus has a slightly different arrangement of its genetic material  called RNA. The specific arrangement of the RNA is called the genotype.

The main hepatitis C genotypes (also known as "subtypes") are known simply as:

  • Genotype 1
  • Genotype 2
  • Genotype 3
  • Genotype 4
  • Genotype 5
  • Genotype 6.

Each Genotype can also have a subtype such as 1a, 1b ,3a, 3b etc..... 

Of the different genotypes of hep C, genotype 1 is the type most commonly found in the United States. Between 70 to 90 percent of Americans with hep C have this genotype.

Genotype 2 and 3 are the easiest to treat and the treatment is shorter (24 weeks) Genotype 1 is the hardest to shift and has the longest treatment (48 to 72 weeks)

 

Posted 4/5/2011 1:37 PM (GMT 0)
Hi all... My dad decided to start treatment for Hep C. I think I'm more nervous than he is cuz I've been reading lots of different things online. Doc said they were "leery" of doing the treatment due to some score being high for fibrosis. I just wish they would talk in laymans terms :( A good thing is that he is genotype 3a which means he only needs 6 mo. treatment. I'm really nervous about the side effects...should he come live with me?
Posted 4/5/2011 9:06 PM (GMT 0)

Marie, you picked up on an old thread.  Since you are a new member, please copy and paste your post into a new topic (highlight your post, hit CTRL C, hit New Topic instead of Reply, CTRL V to paste into your new thread.)  Give your thread a title.

We don't want you to fall between the cracks.

Hugs,

Connie

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