Thank you so much for the information, it was really helpful.
Dee
Good question, good thread. I had many extra-hepatic symptoms that a doctor should have caught. Saying that there are people who go to rheumatologists for their pain and find out they have HCV then.
It is frustrating trying to find out what all these symptoms mean only to find out almost too late what it was.
By the time someone paid attention I had cirrhosis.
No need to apologize, because that is why the idea of a "Forum" is so effective. We can all brain-storm, and work out, via personal research, personal experience, what the facts really are.
We can correct ourselves,and each-other, all for the benefit of the whole group. That's what it's all about: helping ourselves and helping others.
To err is human~ good luck with your thyroid levels, this Hep C Tx does affect that unfortunately, thus the frequent labs, etc
I apologize, unreservedly.
I have come out of the gate, guns blazing, and I'M WRONG.
Extrahepatic manifestation is also seen with patients with ALC (alcoholis liver cirrhosis).
My, am I rueful!
Taking a break. I wondered why I was all fired up all of a sudden, and blood tests on friday showed that I have (not neatly might I add), gone from having hypothyroidism (14 years), to now having hyperthyroidism.
May explain it.
Going to take a chill pill, and try and find a bike to ride.
My understanding is that extrahepatic manifestation is directly related to the HCV virus, but not necessarily to the liver.
Please correct me if I am wrong.
Various extrahepatic manifestations caused by hepatitis C virus infection.
Nagao Y, Sata M, Noguchi S, Tajiri N, Ono N, Fukuda T, Kameyama T, Ueno T.
Source
Research Center for Innovative Cancer Therapy, Kurume University School of Medicine, Kurume 830-0011, Japan.
Abstract
It has been reported that hepatitis C virus (HCV) causes not only liver disease but also disorders of other organs and tissues. Previously, many HCV-related extrahepatic manifestations have been reported. In this study, we report 2 patients in whom tongue cancer was detected during the treatment of HCV-related liver disease. In one patient, tongue cancer was detected during the treatment of HCV-related liver cirrhosis, and articular rheumatism developed thereafter. The duration of HCV-related liver disease was 10 years. In the other patient, tongue cancer was detected during the treatment of HCV-related hepatocellular carcinoma. This patient had a past history of thyroid disease. The duration of HCV-related liver disease was 6 years. In these patients, the possibility that several conditions incidentally and concurrently developed cannot be denied. However, the conditions described above may be regarded as HCV-related extra-hepatic manifestations. In patients with HCV infection, it is important to examine conditions in organs other than the liver. Careful follow-up is needed.
Thanks for for the clarification.
"Extrahepatic Manifestation means diseases or conditions that affect organs other than the liver. "
DUE to HCV is the important part left out in your definition.
When I wrote that I was responding to asle's quote as it seemed to me (and sorry asle if I was wrong) that she was saying they are conditions apart from the liver and I wanted to tie it back to how it is indeed related to the liver and HCV.
I wasn't implying that you were talking about something apart from HCV.
This is a hepatitis C forum so extrahepatic manifestation is the topic related to the forum. I have just read online documentation back to 1995. So it appears that this isn't new information. So when doctors say, " Oh no! it has nothing to do with Hep C" ...they just forgot about it? ...Or forget about it?
My Dr has been treating Hep C for a long time now, and she runs our
support-group. So many people there have been complaining about other symptoms, like joint pain,(pre-tx) for years now, which she does mention.
"Extrahepatic Manifestation means diseases or conditions that affect organs other than the liver. "
DUE to HCV is the important part left out in your definition.
DWBH- When I started tx I had a lot of those manifestations that were generally not acknowledged to be due to HCV. However in the pat few years a little more has been published about it,
http://www.medhelp.org/user_journals/show/515833/-Other-Systemic-maladies-from-HCV
"Is this a really a new finding or just not talked about before now?"
Extrahepatic Manifestation means diseases or conditions that affect organs other than the liver.
These may include fatigue, myalgia, dry eyes and mouth, pruritis (severe itchiness), and thyroid disease.
www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
Joint pain is a common extra-hepatic symptom, "extra-hepatic" because it is out-side and away from the liver. Another example may be spider veins in the legs, or Visalia...again, these are skin conditions, not having to do with the liver. But if it was a varicose vein, that could be considered a hepatic symptom, because the liver is no longer working smoothly as a filter, so the blood is more forceful in the veins now, causing bulging, so it is a symptom related to the liver, as is edema, and ascites. Both of those conditions are caused by the liver not working properly...the fluid isn't flowing thru the scarred liver properly, and ends up in other places, like the belly(ascites) making the belly appear hard and pregnant looking, or the legs (edema) causing the leg to appear full of fluid, which it is.
Just read the log on extra hepatic manifestation of hep c. I have an idea but can someone fill me in?
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It is not a new finding. Extrahepatic manifestations of Hepatitis C have been known about since the 1990s. However, the it is becoming more and more apparent that there are more extrahepatic manifestations of Hep C than were previously known. If a person googles:
"extrahepatic manifestations of hepatitis c"
many sites and articles come up. Some of them date back to the 1990s. So this has been known for years.
For those who are interested, here are 2 very good sites listing extrahepatic manifestations of Hep C:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
http://www.ccjm.org/content/72/11/1005.full.pdf
The realization that people with Hep C have a higher "all cause mortality rate" than people who do not have Hep C, is a newer realization.
"Hepatitis C Ups All-Cause Death Rate, SVR Reduces Mortality"
"After adjusting for other risk factors, people with chronic HCV infection had a 2.4 times higher all-cause mortality rate."
http://www.hivandhepatitis.com/hepatitis-c/3077-hepatitis-c-ups-all-cause-death-rate-svr-reduces-mortality