Hep C Treatment Using Harvoni Medication

Updated

I have cirrosis and hep c. My doctor has put me on a 12 week course of Harvoni. I finish my treatment in 3 days and then am off for my blood test. The results of my first blood test show significant improvement. I read a lot of other people's experiences who have been on this treatment. A lot I've read say after there 1st blood test (4 weeks on treatment ) that they have already been cured. I'm feeling quite down that my results don't show this for me. While deciding my treatment, my doctor kept changing his mind of the length of time to be on treatment (12 weeks or 24 weeks).he decided on 12 weeks in the end. He's accidentally given me 1 extra repeat. My 12 weeks is up in a few days and I'm thinking of getting it, so I'll be on it for 16 weeks and not tell him. I feel like doing this for all the reasons I have just mentioned, results of my 1st blood test and comparing mine with other people's, my doctors confusion about length of time for my treatment, the fact I have cirrosis and I'm scared I won't be cured and ill get worse and die. What should I do? My gut feeling is to not do it and I probably won't. Can someone please help me with some advice about my situation? And what happens if I'm not cured ? Does my hep c keep progressing and make my cirrosis and liver damage worse? Is there anyone out there who hasn't been cured? And what has happened to them regarding progression of liver damage? Thanks ????????

11 Replies

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1

Hello, Maxy! How are you? I'm sorry about everything that you're dealing with.

According to the manufacturer, Gilead, most people are cured with just 12 weeks of treatment, they list it as being effective for 96 to 99% of people in clinical trials. Thus, I don't think you should add more time, unless your doctor feels it is necessary.

Everyone is different and will respond differently to any given treatment. And, even though someone had a negative viral load one month in, that doesn't necessarily mean they were completely cured in just a month.

When do you go in for your next testing?

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2

Thank you for your reply Verwon, it really made my day. You are my 1st and only reply and am feeling so grateful to you. Since I have found i have out that i have cirrhosis as well as hep c i have noticed isolating from people and not telling friends about the cirrhosis and in general pushing everybody away. That's why im so grateful to you and i appreciate you taking time to help me. I had my last blood test about 10 days ago after the end of my 12 week treatment of harvoni. I've received all my results accept the 1 my doctor told me was the important 1 one detecting the virus. I still haven't heard from him. The other liver tests he said they looked much better but didn't say much more. Im left fearful and worried, lonely and isolated, by my choices. I'm not sure what to do next or if i should call him even though he said he would call me. Thanks again Verwon, if you have any advice i'd love to hear it.

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3

I would stay on the medication as long as I could. My doctor tried to get me the 24 week treatment and the Insurance Company denied then settled for adding to my treatment with adding another anti viral. I want this stuff gone. So whaterve it takes to do so. Good Luck

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4

Thanks organe, I've finished my 12 weeks of harvoni treatment and then had my blood test and i cant believe my results say that I am virus free. I was so surprised as i thought that having cirrosis and having hep c for such a long time ( about 25 years ) i thought it would not happen for me. I am so grateful and happy and i think that the man upstairs has a lot to do with it. At first I thought that maybe my results we're wrong and they had made a mistake, I need to have a little bit more faith in the doctors and medical science and hope that its still clear of the virus in my next blood tests in 3 months time. Im sure it will be and i pray it will be the same for your. Let me know how you go, thinking of you

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5

I am glad to hear your blood test results were that positive! I too have Cirrhosis and hep c. And I just started Harvoni 3 weeks ago. and I am scared too. I also have had it for 20 years. Thank you for your post and good luck!!

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6

Hi Jake, thanks for your reply. I am so glad that I went on the treatment and have had such a great result. It can happen for you to. It is very scary and very depressing. The good thing my doctor said was that harvoni treatment has such a great success rate, I think it's 92%. He also said that if the treatment didn't work this time that next year they will probably have a new treatment next year as medical studies and research are more advanced than ever. They keep on progressing all the time. Never give up hope. When he told me this I didn't feel like wow that's great news i wanted harvoni treatment to heal me. But I had to remain positive and believe what he said so I could get some peace of mind. I have to have another blood test at the end of this month to see if I'm definitely clear of the virus as the doctor said it can hide in your body, so once again i'm worried and depressed and all I can do is go back to my doctors words and have hope, otherwise my negative head will drive me crazy. I pray and hope that you will be cured as it's such a high success rate. Everything will work out how it is supposed to for both of us. I really wish you all the best and if you can find the time I'd love to know how you are going. If you have any advice for me I'd love to hear from you, all the best.

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7

Dont take any blood test regarding Harvoni till
1 month is up.

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8

I did the 24 weeks and have been virus free for over a year. Minimal side effects and success. Prior to Harvoni I did the triple therapy which was very hard. I was cirrious stage 3 same as you. I'd ask to go the 24 weeks to be sure

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9

You need to complete the full course of Harvoni and then worry or not. Your doctor should extend the treatment time. Sounds like you should find a more experienced doctor familiar with Harvoni. My husband and I had great results with Harvoni. Although I had a liver transplant due to too much damage before treatment, ie cancer.

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10

Hi Maxy. I was on Olysio/Solvaldi for 12 weeks. I failed after 3 months. Then was on Harvoni for 26 weeks. Nailed it! I've been clear for about 2 1/2 years. I was at 4th stage liver failure, wt. loss, hair loss, brain scrambled, and tired all of the time. Kept working, but it was grueling. My liver is slowly getting better. It will probably never be 100%, but at least it has a chance. I had Hep C for 40 years, didn't find out until 2006, got really bad in 2009, bleeding varicies, fluid retention around my lungs, low platelet count, and a few bloody noses. Scary to say the least. All of those symptoms have improved. I've been alcohol/drugs/tobacco free for over 35 yrs. Diet, rest, exercise, and a healthy diet are soooo helpful. Try to follow the blog of a survivor named Karen Hoyt.. She has been an angel for so many of us who have and are surviving HepC. She also survived liver cancer and a transplant. So if you want some real guidance, she's wonderful. So you hang in there, Maxy. Don't give up before your miracle happens.

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11

Hi just read your message i can kinda.relate ,im 65yrs old in Australia im on epclusa think same as harvoni ,12 week course of tablets im on 33rd day .3rrd week had loud ringing in my ears next 3 days no hearing in right ear any way my normal dr put me on steroid type med fixed it up so far ,the nurse i have at liver clinic said she had never heard of hearing problems mmm how can she not its one of main side effects people seem to get.anyway i also have copd (emphasemia ) she reckons treatment wont effect copd,i find this a bit strange as it must be a really strong med to get rid of hcv in 12 weeks ?i cant see how it can not effect your immune system i wanted to get my blood checked out after being on it for 5 weeks to make sure it is doing what its supposed to do and not .making my immune system worse.espeially having breathing issues on top of every other thing last year i had a few infections come up on legs And arms just from working around the yard my dr had to give me 2 different anti biotics to finally.clear it up,this is why im concerned about if any thing bad is happening to my immune system.!im suppose to be stopping ciggarettes with my emphasemia but this med is making me very anxious id just like to know if epclusa is working or am i just waisting my time and wrecking my immune system .my normal dr is away for a mth so i cant even talk to her,the liver nurse that i see when she has time seems to have an answer for everthing ,i end up walking out of there without any answers only what she thinks ,im old enough to be her dad ,i didnt feel sick pre treatment main reason i went on it was myVL inreased a few mil which i have found out recently influenza vaccine especially the one for over 65yr olds ( 4 dif vaccines )can elevate VL but no one told me that.!!@now i just dont know what to do keep taking med or stop and hope i havnt damaged my immune system .im 65yrs old geno 3 still only f1 fibroscan 7,2 feel ok considering my age emphasemia gives me more trouble then anythink else i think ,plus i grew up in the 70s (great days )if anybody has any suggestions or ideas please let me know asp,sorry bout the long rant its 5am here and my head seems to be racing.thanks.

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