Help with liver pain

[nevrsaydie]

Greetings Members,   I am a newbie to the forum.  I just sat here and read posts for over 2 hours on as many topics about Hep C as I could find on the net.   Here is my story and subsequent reason for posting my question.  I thought I had a huge amount of physical problems until I read the post from the woman with more issues than me.  My heart goes out to her and everyone who suffers from this debilitating disease.  I was diagnosed with "C" in 1999 and the biopsy was not pretty.  The comments on the biopsy read as follows:         The triads are expanded by intense lymphoplasmacytic inflammatory infiltrate with multifocal piecemeal necrosis.  In addition, there is portal, periportal and focal bridging fibrosis as confirmed on the trichrome and retic special stains.  The iron stain is focally positive.   A single poorly defined granuloma is seen in one of the triads.   That was in 99'.   I took a substantial amount of herbs and vitamins, no alcohol,( that hurt ), don't smoke and here I am almost 12 years later.  Sounds good , doesn't it ?  Well this is where the fun starts. ( LOL )  March of 09' I suffered a pancreatic attack with subsequent "suspected" myocardial infarction after very elevated BP due to excruciating pain.  I promptly lost 30 lbs. in 30 days, slipped into sort of a barely hanging on state for 93 days, uncontrollable bowels ( TMI ?) and severe dehydration.  I wanted to give it up.  But as my wife of 33 years sat on the edge of our bed holding my hand and hearing her say,  "It's ok honey, you put up a brave and courageous fight."   Being an old combat Marine in Viet Nam stationed on a medivac compound,  where I suspect the Hep C came from,  I learned early on to "NEVRSAYDIE"   It's not over til its over!   So much for the lightheartedness, huh ?  I even make myself laugh at times.  My reason for this post is this.  When I got the news about the Hep C in 99,  the positive response rate for Hep C was at a dismal 6-8 percent, I believe.  I have developed dementia in the last 2 years, Yippee!  So don't quote me on the numbers.  In addition, I have genotype #3,   a formidable opponent if I say so myself.   Notwithstanding the fact that Hep wasn't responding very well back then to treatment, but type 3 was laughing at the treatment. And those that braved the treatment and did not respond, it seemed like their Hep came back with a vengance, almost a payback if you will.  So I decided not to put myself through that hell and hoped for science to come up with some sustaining treatments, and that I could stay alive to try them.  Well here we are in 2011 and I am in some pretty strong pain 24/7 in the upper right quadrant.  It feels like a very bad cramp just under my right rib cage at the liver locale.  I was placed on Hydrocodone a couple of years ago for occasional strong pain, and consumed them sparingly due to the acetimetophen, 325mg.    The current level of pain in that region has me taking meds twice a day now with only minimal results.  I was placed on pain management Wednesday and prescribed Butrans transdermal patch, offering 24/7 pain relief.  ( What a long winded story to get to this question ).  My doctors told me that a dying liver doesn't produce pain.  Okay board members, do dying livers cause pain? and if that is the case, how severe will it get and should I give some credibility to the whole pain management program now so I am comfortable.  My GP is a friend as well as my Dr. and getting straight answers out of him is a crap shoot.  I guess I am wondering whats my next step.  Now that science has a few more tactics up their sleeve regarding slowing up the Dragon, are there any new treatment drugs that can effectively slow up Type 3 ?, and more importantly than that I think is, am I too far along with this thing to expect any improvement with lasting results ?  The pain is damn strong as I mentioned and as I sit here tonight holding this prescription for this strong opiod and the thought of 24/7 relief, I also think about the flip side of that scenario.  The opiod will not be nice to the liver as it metabolize's there.
Lotz of questions from an uninformed old Jarhead.  Care to share?   Thanks and Peace be with you all.

[nevrsaydie]

Thanks UK Girl, that's the game plan.  After further inspection of medical records, I discovered that my Genotype is actually 1a, not 3a as posted earlier.   Now I remember why Hep Docs were not encouraged to treat me in 99'.  Very few positive responses back then.  Since very few options existed in 99' for me, and the reports of accelerated replication after failed treatment on Genotype 1a patients, I opted to pursue a lifestyle that was as holistic as possible, instead of doing just nothing.  I worked hard in the sun and sweat ALOT,  helping to rid my body of toxins that the liver wasn't.   I do not want to be that wordy new guy that writes a book in the forum, but I do have a number of questions that beg answers so I can be better informed.  I  
feel lucky to have stumbled upon this forum, because I seem to be getting to a point where I need more info.   Pulled out the gastro docs # today and will call for appointment.  Thank you UKGirl.

[UKgirl55]

Some great responses! I'd go to a gastro/hep doctor and start to find out exactly what stage you're in. From there, you can discuss treatment. My last biopsy was in 2008, which showed inflammation...nothing else. I have horrible RUQ pain and have been told over and over again that it's not the liver. A couple of doctors have said that it could possibly be from the inflammation and I do believe it is. In 2008 I had my gallbladder removed and I've had this pain ever since, so it could also be that. I have an appointment with a doctor that specializes in pain after gall bladder surgery. You might surprise yourself and find out that things are not as bad as you thought and now there's treatment out there that could kill this ugly virus once and for all and you can then go on with the rest of your life.

[HectorSF]

Yes genotype 3 is a "good" genotype to have. Cure rates are about 80% and treatment time is only 24 weeks. Hasn't your doctor explained all this to you?

Second you should be at least seeing a gastroenterologist. Not a PCP. To have continual pain and not have a diagnosis is ..hard to believe.
The pain probably isn't you liver, more likely gallstones. Have you have abdominal scans? That will usually show what the problem is. Liver pain usually only occurs during End-Stage liver disease. If you had that you would be experiencing many other complications as well. So again it is unlikely your liver. Taking all the pain meds is not good for you liver that is for sure. Plus some are addictive.

A biopsy from 1999 really does have any relation to the stage of your liver disease now. You should have a new biopsy before starting treatment.

good luck.
hector

[SusieS2010]

Hi Nevrsaydie. Your information about genotype 3 is wrong. It is genotype 1 that historically had the worst rate of response. Genotype 3 patients respond to pegylated interferon and ribavirin about 75% of the time. I don't know if it is too late for you to treat. Whrt do your doctors say about that? I see you are in Florida. There are some good hepatologists at UMiami if you are near there. You might discuss treating with them. Have you had a more recent biopsy to see if you have progressed?

As for the liver not causing pain....technically the doctors are correct. The liver itself does not have nerves. However it sits in a capsule that does have nerves. When the liver is inflammed it presses on the capsule and can cause pain in the right upper quadrant and even in the right shoulder and right side of the neck.

I wish you luck and I hope you get some answers to your questions and get rid of that pain.