symptoms with hep c

Can anyone tell me why doctors insists there is no pain or virtually any other symptoms associated with hep c?  My husband has had hep c for over 30 years, was transplanted in 2006 and the hep c returned immediately following surgery.  The doctors have elected not to treat until now.  He is supposed to start treatment in January.  For all of these years and most particularly since surgery he has had bouts of extremely high fevers, fatigue, joint pain, muscle pain, etc.  They discovered the hep c only 1 year before his transplant and contributed the symptoms to the liver failure, not the hep c.  Now the dr says the biopsy shows stage 1 cirrhosis in the new liver and a viral load count of 13,500,000.  I asked him about the fevers and pain and he insists there is no symptoms associated with hep c.  I have read numerous articles which list the exact symptoms he is having with hep c.  How do I convince them that these symptoms are caused by the hep c?  This is the most prominent hepatologist in Memphis and his regular gp agrees that it is hep c.  I am concerned that with all of the symptoms he has now that with the added side-effects of treatment he may not be able to follow through.  Any suggestions?

[Upbeat]

The way hep-c symptoms differs from one person to another is unreal.  Some people kick the virus on their own,  others live with it without any problems and some people have every symptom you can amagin.  I think its in the genes.  Fatique is the most common sympton associated with the virus.  Others complain of joint pain and muscle pain and these may or may not be associated with hep-c. I hear more about the joint and muscle pain from people on treatment. As you can see there is not a one fits all with this virus.

                                                                                                                            Ron

[jonney4141]

my doctor also insists that joiny pain has nothing to do with hep c, yet it took 3 years and being sent to rhematologist to find out i have hep c....

[Keith_2008]

I have the same problem. I have had a frozen shoulder both right and left. I got pain in my shoulders. The Doctors have been telling me for more than a year that I have rotocup syndrome. I recently had an MRI done on both shoulders and the Doctor called me back and said " Good News you don't have rotocup syndrome". What the hell does that mean after a year of telling me that I do? I think all my fatigue issues are related to the Hep C. The Doctors seem to down play that. Of course they still can't tell me whats wrong with my shoulders.

[konyha]

My first and second GI minimized the pain big time.
I dumped both for various reasons

The GI I have now was VERY  frank about how unbearable the pain can get.
He treats a lot of HCV patients,
   His first line of defense is Tylenol and lots of water
   His 2nd line of defense for chronic pain related to HCV is gabapentin (Neurontin) as
   appears to be well tolerated.

I have read about this and found much to support Gaba related to pain and HIV but not HCV. I don't have joint pain but do have horrible bone crunching, tissue and muscle grinding in upper arms and quads.

I took gaba a long time ago and it helped a lot but it caused severe sleepiness.
I take an AED along with an AD for interferon induced depression, but kind of doubt the viability of an AED to treat HCV pain - most people are quite rightly reluctant to take seizure meds out of hand any way.

Ask the GI point blank why he down plays known facts related to pain and HCV.

[Xenigma]

Some Dr.'s know all the extrahepatic manifestations of hepatitis that come along with the virus (maily rheumatologists) and others don't believe that HCV cause the below symptoms...
http://www.hcvets.com/data/hcv_liver/extra_hepatic_and_other_manifest.htm
and probably more symptoms.

[stubby226]

I just saw a neurologist regarding my brain fog and neuropathy.  I just contributed it to my tx since it started when I was on tx.  She really surprised me when she said that not only could the meds cause it but the Hep C itself could be responsible.  I am having my MRI Tuesday to see if there is anything they can out their finger on.  She is a relatively new md but I was impressed with her knowledge on Hep C.  I really believe the older docs are not as open or knowledgeable of the relative new problems we present with.  I wish you and your hubby well.  Can you change docs?

[Vintendo56]

More than likely your doctor is following the "conventional" theory that since the liver itself has no pain neurotransmitting agents in the liver itself, that Hep_C can't cause any pain, fatigue, aches, fevers, chills etc.

What they fail to understand that with active Hep it affects all the organs surrounding and concommitantly using it, and THOSE organs/functions DO have pain transmission sites.  Upbeats response was spot on, in the U.S. there is very little understanding of the mechanisms of HCV and research is seriously underfunded.

However, if he has all the symptoms you are talking about, he may well have developed opportunistic elements such as CFS, neuropathy, rhabdomyeoleses, or any of a dozen other syndromes that the autoimmune system hasn't been able to fight as it battles with the HCV.  I would definitely get a second opinion prior to attempting chemotherapy.

I went through Pegasys (alpha interferon w/ ribavirin) chemotherapy in 2001 and the chemo itself almost killed me, and left adverse side effects that persist to this day, plus at 90 days, 180 days and at the end I showed 0 viral load, but 9 months later it had climbed to over 14 million!  Maybe they have improved the rate of serious adverse effects, but like Upbeat says, it is a very weird disease that has no one fits all scenario.