testing post Harvoni

[emmett]

Started with old treatment HEPC, severe life threatening anemia, hospitalized and stopped treatment. Harvoni treatment cure over 1 year now but still feel tired and swelling feeling and irritation over liver area, negative ultra sound of stomach but fatty pancreas with my doctor has never seen. I started Harvoni with F3, HCV type 1A and responded quickly to undetectable where I have remained for over 1 year now. The problem is the extreme fatigue has never gone away and my doctor said I'm cured and no longer need to be monitored. Should I be tested periodically for liver cancer and should I also have another test to see if the F3 has gone up or down? I see a general doctor and no specialist so unaware of what I should still be worried about or not. Lately I have been getting severe heart palpitations but do have a history of PVC"s of my heart, they usually increase when I'm getting sick. I wonder how accurate the result of F3 is on fibrosure, could it have been higher or lower? I'd appreciate any guidelines for continued care or is my doctor right in telling me not to worry?

[gnatcatcher]

My hepatologist has anyone post-treatment who is higher than F2 continue to get ultrasounds every six months to screen for liver cancer. It would be a good idea to have another test of your fibrosis level to see if it has gone down to F2 or still requires an ultrasound twice a year. Fibrosure, FibroScan, even the old gold standard the biopsy -- they're all imperfect but better than just guessing. Since what you had pre-tx was a fibrosure, it makes the most sense to have another fibrosure so that you're comparing apples to apples. An additional test, the alpha-fetoprotein (afp), also monitors for liver cancer; it has its own imperfections, but my hepatologist uses it, too.

You are far from the only person on these forums who has been cured but still has extreme fatigue. While we had HCV, it not only damaged our livers but confused the heck out of our immune systems. The rapid eradication of HCV that Harvoni achieves also seems to confuse the heck out of our immune systems. Harvoni gave me a lot of energy while I was taking it, but these past two years post-treatment are a lot like before treatment in terms of my energy level.

Best wishes,

Gnatty

[Lynn K]

Per the AASLD recommendations for follow up post treatment

 https://www.hcvguidelines.org/evaluate/monitoring

SVR typically aborts progression of liver injury with regression of liver fibrosis in most, but not all, treated patients (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010). Because of lack of progression, patients without advanced liver fibrosis (ie, Metavir stage F0, F1, or F2) who achieve SVR should receive standard medical care that is recommended for patients who were never infected with HCV.

Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve SVR, decompensated liver disease (with the exception of HCC) rarely develops during follow-up, and overall survival is prolonged (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010). Liver fibrosis and liver function test results improve in most patients who achieve SVR (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010). Bleeding from esophageal varices is rare after SVR (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010). Patients with cirrhosis should receive routine surveillance endoscopy for detection of esophageal varices if not previously done; if varices are found, they should be treated or followed as indicated (Garcia-Tsao, 2007).

[andrew j]

Hi emmett,

Like you, I feel tired all the time ... really tired - but I put it down to the sorts of things Gnatty has covered (above).

I had Hep C for 40 years.
I knew something was wrong from early on - but then, for the second - the last 20 years - I was full-blown symptomatic.
I was really unwell.
... So I've been through a lot stress and anxiety, as well as the physical stuff.
... Combine that with clicking over 60 - and I sort-of expect to feel tired?!!

[Like you] I had discomfort, and jabbing pains in my liver area - but they seem to have dissipated away.
(I am [also] a year-or-so post-Tx).

... So yes - I would definitely follow Gnatty's advice, and get some better and more thorough follow-up.

The healing process seems to be quite slow for some of us.

Best wishes,
A.