I have no input to give on the medical side, but I send you both my thoughts and hope you both get through this tough time. Look after each other and try not to stress too much. x

Thank you !! After a long discussion with my husband, we are going to insist on the Harvoni 24 weeks in 2 weeks, that is when WE are done with omeprazole. This banding procedure (3 times) seems to have done much more harm than good. Very invasive. In the meantime, we will also see our acupuncturist who we trust completely, for help with the portal hypertension.Thank you all for your support.

Thanks for clarifying the confusion.

The EASL guidelines (European guidelines, attached) report very similar SVR rates for sof/led and sof/dac.  What I would say is that the number of studies for Harvoni is greater than for sof/dac and in that sense this is more reassuring. 

If it is only a matter of weeks then it won't make much difference, but if 40mg of omeprazole is to be prescribed for longer then the sof/dac combo looks a good one.  I'll try and see if the large European compassionate access trial data for sof/dac are available yet.  If the data from this study confirm the high 90s SVR rates for sof/dac found in the smaller studies quoted in the EASL guidelines then it's safe to say that sof/dac is equally as good for G1a as sof/led.  

The real difference would be if RAVs existed for either led or dac...and there would be no way of knowing this prior to treatment unless specific RAV tests are done, and these aren't done in most clinical settings.

Yep, I misunderstood your post, Sue. I thought he had already started and was facing a two week break in treatment secondary to the banding and high dose Omeprazol. Sov/Dak +\- Riba is a good protocol, too. There are some excellent options and getting started soon is a good idea in any case. Good luck.

He never yet started the Harvoni. The hepatologist puts him on omeprazole 40 mg 2x/day after the endoscopies for healing - so no acid reflux will occur (even though he has never had refllux in his life). She said 2 weeks than he can go off it and start Harvoni. The second endoscopy -she had him on the omeprazole for 4 weeks (not sure why). My husband has fantasic digestion anyway. Of course he will probably decline the TIPS shunt and take his chances and want to get started on treatment right within the next 2 weeks. He was very close to declining he endoscopies completely, but agreed to at least one. We should have done that. Now she is saying the varices are worse, but 4 weeks ago she said they looked better?? So basically, he could not start the Harvoni (which is the drug tx we want) until the omeprazole is done. She said we can do the Dak/Sofos and start now, but we don't feel as confident about that one. I feel we just got sucked in the "band aid" approach instead of getting to the root of the problem. Clinically, he is doing really well.

Hi Susie

Sorry to hear about your husband's problems.  Wendy makes a good point, but it seems you are aware of looking after yourself.

I can't speak to varices as, fortunately, I haven't had this issue.  I can relate to the desire to get cracking with treatment though.  My memory from your previous posts was that he was offered DAAs in and around the time treatment for varices was proposed; and that you decided to broach one problem at a time and in order of importance.  But judging by Tig's post I may have got this wrong, as it sounds like he had 2 weeks of Harvoni and then stopped (is this correct?).

I'd be very tempted to get going with treatment.  At the very worst it would mean no further damage was occurring.  At best there would be fibrosis regression over time.  There is evidence of regression after SVR.  One good study showed that 65% of patients had a one fibrosis stage regression over a 2.5 year time frame. But as Tig points out, with decompensated cirrhosis the regression may be harder to achieve (but still achievable).

The two issues would seem to be the possibility of RAVs and high dose ompeprazole.  If 2 weeks of Harvoni were indeed had then some RAVs may have occurred.  But these can be tested for and a DAA combo could then be selected to avoid the RAVs.  Further, studies show that longer treatments can overcome any RAV effect size, and due to having cirrhosis your husband would be eligible for a 24 week regimen.  Regards high dose omeprazole inducing the enzymes that metabolise certain DAAs (and thus lower the plasma level), again, this could be countered by tailored DAA combo of drugs that aren't induced by ompeprazole (or ??a higher dose of the drug).

Obviously your husband's hepatologist is the one to advise around these issues and you and your husband are the ones to make the ultimate decision, but from were I'm standing DAA treatment seems a possible option now in tandem with the varices treatment.

Pablo

Thank you. I have pretty good support - I work at an integrative hospital with a full spa, chiropractors, psychologists, emotion code experts, etc. I do realize this is important. My sister-in-law just gave me a gift certificate for a facial. Thank you for the reminder. 

Sue you mentioned you need some support....please do something for yourself. Be it a massage, a pedicure, going out with the girls for lunch...take a few hours for you. How in alcoholics anonymous they have alanon for the family members because any illness affects all the lives surrounding that person. You need to get some nourishment for your soul too. I hope you can find an outlet, support, strength and take a moment for you. All of this is scary and takes a lot of energy. 

Cyber hug,

wendy

Hi Sue,

I'm sorry your husband has had these set backs, especially after the doctor said he was improving so well a month ago. Did she mention why or what caused this change of events? Perhaps under diagnosed a month ago? Hard to determine really, but I'd be asking for additional reasoning. The TIPPS or TIPS procedure can be very helpful in reducing the portal hypertension. It can also aid in reducing abdominal fluid accumulation (ascites), but may take some time to do that. It can increase the incidence of hepatic encephalopathy in 20-25% of patients. That can be controlled  with standard courses of care, but it remains a possibility because the blood flow into the liver is instead shunted through it to relieve the portal hypertension. The liver's filtering ability is reduced, which allows toxins, like ammonia to increase. That tends to result in the higher incidence of hepatic encephalopathy. Remember, it can be treated, so that shouldn't be reason not to consider the procedure.

The question of whether curing his Hep C will reduce his fibrosis (cirrhosis) is difficult to determine since he's decompensated. There's a lot of fibrosis and scarring involved and if some fibrosis regression does occur, it's going to be a long, slow process. It can happen and has happened, so a definitive "No it won't" may be a bit premature. That's one of those questions you ask and dig a little deeper each time you talk to her about it. Regression from compensated cirrhosis is well known, and as I mentioned, decompensated is far more serious and severe. Curing the HCV, regardless of the desire for fibrosis reversal, remains a very important step toward his future improvements. 

I'm sure you're traumatized after hearing one thing and then finding out another. If I were you, I would stay very involved in discussion with his medical team and demand to know everything under consideration. If you trust his doctors and it appears they are being proactive at this point versus reactive, that's a good indication that they are quickly considering their options. Is he being worked up for possible transplant? That would also be a question that needs to be asked now. Since he will experience a two week lapse in his Harvoni treatment, in my opinion, this round of treatment is a wash. If he restarts a new protocol, they'll have to do some additional testing to determine if he has developed any resistance to the newer DAA's and then make a decision on the best course of action. There are certainly options available and testing will prove what is best recommended and the length of treatment given. 

Keep your spirits up, this is just a big bump in the road to wellness. If they can keep him comfortable, reduce his portal hypertension, which will improve the overall problems presented by the varices (bleeding). Primary concern right now, in my opinion is to get him stable, reduce the pressure and use the time to develop a good game plan for his future and there's every reason to believe he will get some good relief from his current problems. It's a difficult journey and I'm sorry you have to go through this. Stay involved with his care and remember to ask all the questions that come to mind. Stay with us and let us know what you find out. We may not have all the answers, but we have your interest and that of your husband's in our hearts and minds. We'll be right here with you... 

Ok friends, I just returned from the hospital with my husband after his 3rd round of esophageal banding, which did not go well. The doctor says things look worse although 4 weeks ago she said things look better. She now wants us to consider a TIPS shunt. So again, no Harvoni for the next 2 weeks while on the higher dose of omeprazole. By now if we had just started the Harvoni 8 weeks ago and took our chances with declining the endoscopie and all this esophageal banding, he may be close to being cured, easing up that stress on the liver. Maybe the varices would not have bled. Should we just start the Daklenza/Sofosbuvir while we are going through all this other stuff? I need to hear from anyone who had portal hypertension and improved without a TIPS shunt. Will curing the Hep C help the cirrhosis? Our doctor says no, but I know that is not true. I also need some support as I feel traumatized. Any help or advice PLEASE!