harvoni with ribaviran

[scott]

Hi all,, I hope this hasn't been asked but chute, I can't read all the posts on the forum to find out so here goes! 

 AS stated in my stats/sig I am no stranger to failed treatments and I have endured four interferon treatments until this new drug harvoni.
 My insurance company initially approved only 12 weeks of harvoni, aptly this concerned my doctor because of my advanced stage 3 to 4 of fibrosis, so he had me start ribaviran but only in the second month of harvoni at which time my viral load was found already undetectable so EVR.
 Right down to week 12 of harvoni, with only three pills left my nurse, gilead and myself contacted the insurance approval doctor who was reluctant to the point of being obstanant and demanding test result proof which with his full knowledge take a month to get results within the last three days even though we had contacted him a month prior but he nefver responded to us. (like we would just go away if he just shut his eyes) -forgive my mini rant! 
 So here I am at the end of week 16 of harvoni and week 12 of ribiviran, my doc said he didn't care if I discontinued use of ribiviran since I would now be getting 24 weeks of harvoni, but my nurse interjected with " well we have the ribiviran pills which are going to go to waste at year's end so why would scott not continue?" So by the end of week 24 I will have taken 24 weeks of harvoni and 20 weeks of ribiviran.
 I recently read that although clinical test results were proving harvoni to boast a 98% cure rate reality is closer to 93% to 99%.
 In 2009 at the EOT of pegatron without virologic response My stools for the first time went pale after being asked since 1998 if I had any pale stools, for which to me had become a standard in judging wether my liver was becoming damaged. That was indeed scary so I asked my doc and he did not seem concerned.
 I recently underwent a gastroscopy and he found my intestinal varices were far reduced since the first gastroscopy a year ago - that's a good!
 I know he is the one to ask but i won't see him for another couple of weeks, so what do you all think? should I have expected darker stools by now or be patient because it either means everything or nothing at all?
 
 Please encourage me I have failed so many treatments I could really use a win this time!
 
 

[Lynn K]

Hi Scott and welcome!

My story is similar to yours. Had hep c since likely 1978 diagnosed in 1990 after donating blood. Treated 3 times interferon based and was a null responder. Diagnosed cirrhosis 01/08. Sovaldi/Olysio 12 week treatment early 2014. Relapsed when tested 12 weeks later.

I was reading some more in depth information about the ION 2 clinical trial (sorry don't have the link) and read that for patients with cirrhosis treated with Harvoni for 24 weeks with or without Ribavirin 100% SVR12. There was about 200 patients in the 2 groups. I was needless to say very excited to see that.

I just finished  24 weeks of Harvoni and we also added Ribavirin later so 15 weeks of Ribavirin. Just got my EOT viral load not detected.

As far as cirrhosis symptoms like pale stools for example curing hep c won't cure our cirrhosis. We will still need to be monitored every 6 months for liver cancer as we will still be at a higher risk. It is believed over time we might be able to have some improvement in liver function and might even at some point no longer be considered cirrhotic.

But for us the most important thing is to get rid of hep c to stop the progression of liver disease. Then hope for liver improvement over time. The good news with cure of hep c our risk of HCC reduces significantly and if at some point we did have to have a transplant we would not have hep c to infect and attack our new liver. However our rush of decompensation also is greatly reduced by cure.

So anyway good luck on treatment fingers crossed for you, me, and all our fellow travelers

[scott]

 Thank you lynn it is nice to hear from somebody with actual knowledge, though I am sorry for you being in this boat with me.
 It's just last year with pegatron/sovaldi those stools did turn normal if for only a few days, but even then my viral load never showed undetectable.
 Another thing is I was appraised through nuclear medicine as a transplant candidate, upon finishing my doctor there said if I showed undectable early (which I did) it would be a good time to actually put me on the list since then given the blood was clear if I recieved a new liver HepC would then be over for me. There has been however no more talk of transplant and I took that as a good thing since having the transplant would put a rather large damper on my physical abilities which I rely on for work, exercise, and especially my latest hobby and passion found in scuba diving.
 Man I long for the care-free days when I needed no medicine at all!

[BubbaT]

Hey Scott,

Hang in there bro, we are many fighting this fight...
I'm at F4 treating with 12 weeks, 2 weeks to go, so far und...

Getting better...
Your diet is key, I'm sure you know that at f4,  are you on a liver diet..?

[scott]

definitly with the diet and counting sodium! AS I learned it our body needs 2000mg of sodium per day. take away the possibility of food which naturally contains sodium such as celery I start my count at 1500 to be an the safer side.. breakfast and lunch I go sodium free and at dinner I usually go with foods and sauces that contain 10 to 12% keeping in mind the amount of said food which contains the 10 to 12% so that if 1 cup contains 10% theoretically I can have 2 cups without a problem. But it is easier to add up the mg's. I rarely bust the 1000 mg mark on any given day.

eat lots of natural foods: prunes dates figs almonds walnuts chia seeds flax seed coconut oil cranberries goji berries in porridge or natural wheat or oat bran cereal.
also lots of green veggies
garlic
grapefruit
green tea
avacado
turmeric
 I try to avoid sugar but even more careful with fat.
I do find it strange that my doctor never mentioned this until I was hospitalized last year in an almost complete hepatic shutdown while on pegatron/sovaldi.
 Now that was some scary stuff right there! hanging by a thread as the good doctor put it.......

Well thanks and you hang in there too!
 Good luck to you sir!

[Lynn K]

Have you been to a dietician for your cirrhosis?

I have heard that below 1200 mg of sodium a day is preferred for patients like yourself with advanced cirrhosis

[scott]

the information I got was from a gastrointerologist who was charged with seeing to theappraisal in preparation of a possible liver transplant. However on your recommendation Lynn I shall make callsthis coming tuesday (our next non holiday weekday). Thank you I will update!

[Lynn K]

Ok is I am not an expert but have seen that other places

[scott]

come to think of it in my reply to bubba  the meaning was implied, but I should have said more plainly, since I omit sodium the first two meals of the day I rarely go over half of my 1500 per day mark leaving me in the 7 to 800 daily intake routine. However I have wanted to consult a dietician for the longest time. but I have learned through the internet which foods are good to have and which to avoid. Even my GF urges me to seek out athe aide of a dietician. It certainly can do me no harm so I shall get on that!