Hep C Discussion Forum

robertsamx · Guru

RE: Not quite sure what to do here

Canuck · Guru

Hi,

My question is the same a RC's - how are you tolerating the riba??

You say your hgb is 12, and that (in a perfect world) you would prefer doing 12 weeks vs 16 or 24 weeks of treatment (if you could, if it was not "necessary" to do 16 or 24), but are you saying this (specifically) because you have found the riba very hard to do?? Has the riba ride been tough, too tough? Can you tolerate another 12 weeks of it? And, I am not sure whether you have been on 1200 or 600 mg of riba. Is it the riba itself that is the thing that would make you reluctant or dissuade you from really wanting to be on a longer treatment?

You and your doc and everyone here are trying to suss ALL the important considerations. It IS nice your doc said "you could", but (1) how likely is it that you will have NO trouble getting the insurance to cooperate? Another factor to consider. And, (2) being that I think you are already INTO your 10th week, would you still have time to get the insurance to approve another continuous 12 weeks anyway? Yes, you are a 3, with a high F, it is also true you have responded very well indeed. You and your doc will have to hash out ALL the considerations, fairly quickly, I would think.

We have one lovely lady here (not a 3, but a GT2 with high F, etc.) who went to great lengths to ensure she got access/further approval for a full 24 weeks of sof/dac/riba, versus 12 weeks - (and it was not at all an easy chore for her to get the 24 weeks!, personally, I agreed with the premise of her getting a 24 weeks treatment based on her conditions, at one point it was being discussed to shorten it to 12 weeks). But she persevered and ultimately won in getting her 24 week treatment length, as she felt and knew it was the right decision for her, based on all her factors. The riba was tough on her - she was only able to manage doing the first 12 weeks of riba, but then, could do no more, it was just too hard on her. She could just not tolerate the last additional 12 weeks of riba, and her doc agreed. She was und at 9 weeks. She finished up the last 12 weeks with sof/dac alone. She did have the added benefit of riba added to her sof/dac for the first 12 weeks, a good head start, and then, she made sure she got her additional 12 weeks of sof/dac alone to finish the whole 24 weeks. Both, the first 12 weeks of added riba, and, the overall 24 week length of treatment, could kinda be considered her "extra insurance".

That "might" be another variable you could discuss with the doc, dropping the riba, if indeed you cannot tolerate it, but then could still complete a continuous 24 week treatment of sof/dac? I don't know.

Just a thought.

Another 3a I know with a high F, (now longer than EOT+12 und) had to procure his own sof/dac and he made sure he got himself 24 weeks, in the end, he said he felt better that he did do a 24 week length.

I do understand the dilemma, and the fear - only you and your doc can figure this out, with good objective thinking.

Please keep us posted. smile C.

-- Edited by Canuck on Tuesday 28th of June 2016 05:03:14 AM

robertsamx · Guru

Hi Dave. If they said you have early cirrhosis, you should push for the extra 12 weeks. How are you tolerating the RIBA? As you know type 3's with cirrhosis need longer treatments.But if it doesn't work out there are triples coming out that should do the job. I hope you get your extension. RC

Pablito · Senior Member

Hi mate

I completely echo what Tig says. Can you clarify what you mean by cirrhosis stage 2? If by that you mean fibrosis stage F2 then 12 weeks is all you need, especially so with ribavirin added to the already very powerful sof and dac.

If by stage 2 you mean Child-Pugh stage 2 cirrhosis I hear you that 24 weeks would be ideal, but presumably this is why your doc has added ribavirin in to sof and dac.

Either way you are responding very well. A week 2 VL below 15 is excellent. To put that in context my starting VL was the same as yours and my week 2 VL was 1000. And I was only on 8 weeks of tx.

You'll be fine. Plus you'll start to feel the ribavirin as the weeks go on. I've been on it before and I was fine for the first few weeks but then the anaemia kicked in. 6 months of ribavirin is a drag. 12 weeks is much more do-able.

Pablo

Tig · Admin

Hey Dave,

I feel your anxiety and can only provide some research and documentation. Ultimately you have to trust your doctor. You impress me with the knowledge that he's a very competent individual and Hepatologist. My only question is regarding your level of fibrosis. He says early cirrhosis, I say you're either cirrhotic or you're not, you're either compensated or decompensated. There are classes of cirrhosis, as there are stages of fibrosis. Fibrosis staging begins at F0 and end at F4, F4 being cirrhosis. As you will see in the accompanying chart, those with a fibrosis stage of F3, achieved SVR rates of 100% on your protocol. Those with cirrhosis (F4), achieved an 88% success rate. That's the determining factor it seems.

Your doctor packs around those credentials and initials, because he has earned them and you have already said you trust him to make the right decisions. He does however give you the option of extending treatment if you desire. That's a doctor that is listening to his patient's concerns and wishes, that is to be commended and appreciated! He makes a valid point though, you did respond quickly and your lab values have remained very good and steady. That's indicative of the action you're after.

Can you find out if your insurance company would approve the extension? If they will, then I think you could approach your doctor with a few more questions and then make an informed decision. Your accurate level of fibrosis, be it F3, F3-4 or F4 would be foremost in my mind when making this decision.

Here is a link to a post just left by our member Canuck that is informative on your protocol and all others: Review/Synopsis HCV Drugs

Winfrey50 · Member

Hey all.....This is Dave ..I'm ten weeks in to my 12 week trip on 1200 Riba, 60 Dak, 400 Sol...../ At start I had hep C, G-3, with early onset Grade 1-2 cirrhosis...2mil VL, ALT-70, AST-66.....treatment naive..........16 days into treatment I was <12, ALT-19, AST-24.....

This for my Hepotoligist was cause for joy....."treatment working with big effect very early".....He has also recently pointed out that ALT and AST have stayed down since that 2nd week, being a sign that treatment continues to be effective.

My question to him and others (thanks Tig for all the info and advice) has always been why not 24 weeks. His answer is that all data showEd him that I wold be best served and least harmed (sides) following this course. Again he is a very well respected Hepotoligist. I trust him, but I asked him what if I wanted to be at, let's say, 16 weeks, or 24 ? And if I spoke to INS Company about staying on longer?.......He quite frankly said he had no problem if I wanted to do that, BUT!! he went on to say that my Hemoglobin level is just over 12 and that my two week numbers were "Excellent".......with my ALT & AST remaining where we want them. ........He said all this plus with the cirrhosis being early he felt, and continues to feel, that this course gives me a extremely high shot at cure. But if I wanted to push INS Co for more time, then okay.............Of course "More F'n Time" on this stuff is the last thing in the world I REALLY want......I just want to beat this.

Thoughts ??????

-- Edited by Winfrey50 on Monday 27th of June 2016 12:41:22 PM

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