brnhoff75
I keep reading everywhere people saying they've been cured or that there is a cure now and then see where others in reply to people talk of side effects from treatment, and the reply everyone body handles the treatment differently, my question is if there was an actual real cure and by definition it would mean that it worked on everyone regardless, Because it's a "cure". Knocking the viral load to undetectable numbers does just that, but does not kill or cure, so my question is will people with these undetectable amounts still develop cirrhosis or cancer Because they still have the virus yet undetectable??
MatthewFerry Community Admin
Hi Brnhoff75, thanks for posting your question. I do just want to preface my response by saying that we cannot provide medical advice and recommend talking with your doctor or healthcare team if you haven't already. For people undergoing hepatitis C treatment, it's possible to get cured and have different treatment outcomes or side effects than someone else. As an example, two people could have undetectable viral loads from treatment and be cured, though one person might experience side effects during treatment or after that the other hasn't. The liver is a powerful organ and can heal itself if treated and cured before scarring is severe enough that cirrhosis emerges. Once cirrhosis occurs, the damage is permanent. Treating hepatitis C can prevent the develop of cirrhosis and reduce risks for liver disease to progress into cancer. Best, Matt (Team Member, HepatitisC.net)
Kimberly Nash Member
Thank you for reaching out with a great question. I too had the same question after becoming undetected in 2015 off a clinical trial for end stage liver disease. I am categorized as a decompensated cirrhotic. My liver specialist advised me that once the "threat" against the liver is eliminated no further damage will happen. Yes the damage that occurred while having and fighting hep c will still remain, the time frame is unknown for sure. My liver specialist described it could be years and even decades for the liver to be able to repair itself.
I am currently on a clinical trial for late stage livers to see if a decompensated liver can regenerate after the threat is no longer attacking it. After the 5 YEAR trial is up they will perform another biopsy to see progress if any of regeneration of a decompensated liver. I am hopeful and by doing my part in eating healthy and totally avoiding alcoholic drinks I can help aide in my own livers health.
Again we are not able to instruct based on a medical doctor, only offer advise based on personal experience.
Please keep us posted on your progress.
'Not without a FIGHT!~HCV~ (c)"
Kimberly Morgan Bossley - Moderator
Emma Currie Member
You raise a fair query- I am not a medical professional but this is the laymans answer I give to that question at work ( I work in the hep c field.)
Yes, although the direct acting antiviral medication does reduce your viral load to undetectable it also makes the patient unable to transmit the virus ever again unless they contract hepatitis C again-and the main difference from HIV medication (where you have an undetectable viral load but could still transmit the virus if medication is ceased.) Direct acting antivirals are different, you do not need to take the medication for the duration of your life to ensure health, and a large difference is that you only carry the antibodies of the virus-the hepatitis C RNA that is present when infected with the virus is gone.
But there is the issue that we have not been able to do significant long term studies on this drug due to it being fairly new on the market. And many people still have negative health effects after taking the cure, these are referred to as 'extrahepatic manifestations of hep c.' There is not a whole boatload of research on extrahepatic manifestations yet, why they happen and why there is a noticeable trend in what kinds of symptoms and ailments are a part of it. Some chalk the manifestations to being the result of a dangerous virus running rampant in the body unchecked for a period of time, but there is not enough evidence for anyone to state decisively what causes them.
If you have any questions feel free to reply or message me.
brnhoff75 Member
You said there is not enough long term studies on this new drug. Are you referring to Mavyret? and one other question so say ones viral load is at 2 million and some change and they take the treatment and the viral load gets knocked down to undetectable where did the 2 million plus viral load go once it died off ? what does your body do with all the dead virus in your system?And lastly if having hep C causes liver cancer will carrying around an undetectable viral load put you at risk just the same? I do appreciate and value your input so far yours has been the best and I can see your more educated
MatthewFerry Community Admin
Hi Brnhoff75, I wanted to provide an answer to your questions about viral load. The number you receive for viral load indicates how much of a virus is in your blood. As you progress in treatment and your viral load declines and eventually becomes undetectable, this would indicate that much of the infection is eliminated and may not be present any longer. A qualitative viral load test may be followed up with a qualitative one to confirm or deny virus elimination. Typically after treatment, SVR screening is the most effective way to understand treatment success. Getting cured of the virus will reduce your risks for liver cancer and liver disease, and the liver can heal itself to an extent if it hasn't achieved cirrhosis or other serious scaring. I hope this provides some clarity–do let us know how your treatment goes? Best, Matt (Team Member, HepatitisC.net)
jaylea Member
I wanted to give you all some hope that have mid-late stage liver disease. In 2011 I had stage 2 liver disease and my liver failed completely. I was already halfway through the disease process. Fsst forward to march 2020 after being healthy for 4 years my fibrosis score is 0.16. Even though my viral load was over 4 million. I just started treatment with epclusa 2 days ago and all i have been doing is sleeping. Im itchy... Like when my liver failed! I work a hard job. Outside in Florida heat. I know i need to treat but i have to be able to support myself. My liver healed once i started taking care of myself but I don't want the low grade fevers and fatigue that the hep c brought on. Now someone give me hope as far as the epclusa before I give up on it!
jaylea Member
Thank you so much. Im now a little over 2 weeks in with the epclusa. The side effects keep changing. Im doing good. Im not missing any work. I cant. Im in my 'starter' apartment that is not in the best complex. They don't fix anything, its old, there's mold in the building. Ive been here 2 yrs its definitely time to move on. So... With that being said my lease is up mid September and I've got to move. Ill be done treating by then. So I'm taking the epclusa right after work. It makes me tired. I was having trouble eating anything besides cereal at night and then hungry at work. So i bought a bunch of stuff today that i can prepare quickly and has protein etc in it. Ive lost about 15 lbs but i really can't attribute that to the epclusa because my weight goes up and down and now its summer and the heat in fl is tough. I just dragged myself out of bed. Folded laundry and am washing my sheets etc. Ive noticed chills and just an overall feeling of having a slight cold. I can get through this. I appreciate all of you being here for me. I only know one other person that treated and the person said that they re-infected themselves on a relapse and is not consistent enough right now for me to talk to. I really need you guys. Anyone else take epclusa and can tell me what to expect? Anyone have extremely vivid dreams?
Thank you
Forever grateful for this chance to cure.
God bless
JayLea
MatthewFerry Community Admin
JayLea congratulations on starting treatment, we know getting coverage is especially tough. While I can't speak to epclusa, someone who has used it will share their experiences. It sounds like September holds promise for some exciting changes between finishing treatment and moving into a new place! I hope things come together and in that time side effects settle. Have you been able to connect with anyone to discuss your current symptoms? -Matt (Team Member)