Hep C Discussion Forum

While it was fresh in my mind, I wanted to pass on the experience of HEP C Treatment with Harvoni.

APROVAL : It took a long time to get approval from Express Scripts. Mainly because of incompetence on their part. I had been approved for 8 weeks of treatment (I was at Stage 2/3 Fibrosis, and count was only about 150,000). But then because of other issues, I went to the Mayo Clinic in Rochester and had many tests done there for many things including one of their MRI's where they vibrate your liver and check something. This is supposed to tell them the same as a liver biopsy. This was about 3 years after the first test, and showed stage 3/4 and the blood test showed 196,000 count (I agree this is low). Mayo said I should have 12 weeks of Harvoni. I went thru a NP in St Paul to get the treatment instead of Mayo. He requested 12 weeks instead of 8. We never heard back. I called and was told my Doc requested 8 weeks. I got letters from express scripts stating I was approved, but when I called, it was only for 8 weeks. I even called and talked to someone there and she said it is for 8 weeks, if you need 12 weeks "I am sure they will approve it when you get close ...". Finally I called and found the right person. Sorry I am not sure if she was with Accredo (their specialty pharmacy) or E/S. But I got the right person and explained and she said, let me check. We should cover 12 weeks in this case because you are at 3/4 for fibrosis. She returned to the phone and said she approved it and I should get a call asking when I wanted it delivered. Problem solved.

START : I was nervous about starting but for the first week or two I had no side effects at all. Then I would get an annoying headache from time to time, but if I chugged a lot of water, it would go away in just a few minutes. Probably about week 5 or so, I would get the headache and ache all over. But chugging water took care of that also. Amazing how quickly it resolved it.

FELT BETTER : As time went on, I felt fine. When I started the treatment I was very tired and run down, and short of breath all the time. This was the reason I went to Mayo. But they never did anything. They just did tests. No Medication new or changed. But week 7 or so, I noticed that I was much peppier, not short of breath anymore, and I could do things around the house again. I attribute this to the virus being gone. (After weeks 4 and 8 my viral load was 0).

OBSERVATION : In about week 8 or 9, I would still get the aches and Headaches, but for some reason (and I would be interested to know if others had this same experience) it seemed water was causing the headaches. If I chugged water I would get the headache and body ache and it seemed if I just used a little water each day, I would get fewer headaches. It just kind of flipped one day and the water became the bad guy. Now maybe there is some other reason, but in my mind that was the cause

SINCE : I took my last pill yesterday. (Today is 8/31/17). I made a point of chugging a bunch of water, and NO Headache or other aches. Still I am not sure about the water but it even seems more like in the later days of treatment it turned on me. I am glad it seems OK now, because I do believe a lot of water each day is a very good thing.

DRINKING : I must confess. I usually drink beer. I have drank on average 35 beers per day for at least 15 years before treatment. I decided I should quit while I was taking Harvoni. I was not sure how bad that would be, so I kind of let it go for a few days before I started and had 6-8 beers each day. But I quit the day I started the Harvini. I thought I would be craving a beer. But it seemed more like I was drinking as a habit and not so much as an addiction. I had no problems quitting. However, my grandson had a grad party and I had 3 beers there. and other times I had opportunity and had a few her and a few there. All tolled, probably 15 or 20 beers during the 12 weeks. It never made me uncomfortable or sick or anything. But I was not too proud of myself. I am not sure what I will do now that the treatment is over. I had 3 beers last night to celebrate. Since I have mostly been away from it this is a good time to change things up. I drank almost every day before. Not a lot, but some. I would like to cut down the frequency. I enjoy it. And YES I know it is bad for me and attacks my liver and all the other things it can do. But something inside me says it will not be my destruction... something else will be. And I enjoy it to the point where I do not want to give it up altogether, but I do want to cut back.

CLOSE : I just wanted to enter this while I was still thinking about it. I go in 13 weeks (a week later than usual due to Thanksgiving) to get my final results. I must say I feel a lot better and I am very thankful. I paid nothing for the Harvoni. I had an $8000 out of pocket max for my insurance I I paid all that by March at the Mayo. But assuming I had to pay for it, I would pay something. The amount is immaterial, but I would pay. I hope and pray I come out a 0 in 13 weeks. And I certainly wish anyone else good luck. All in all, it was much easier and much less intrusive than I ever expected.