This is great news Tony! After the previous failures, it's understandable your hesitant to claim SVR, but it's time to update that Sig to BOLD/RED SVR-24 and lets have a big party!!!  

Excellent news, Tony.  Well done.  

Congrats,! I go and get my 4 week after VL test tomorrow and will be starting your way !  See you there!

Hello again.

Another 12 weeks flew by post TX and with that so did my 16 and 24 week labs. I have maintained the <15 NOT DETECTED HCV RNA or no detectable virus and on this TX I guess I can finally thrust my sword one last time and claim SVR!

Honestly I am still waiting to wake up or a call that there was some error. But after almost 30 years of being a double loser on previous TX... the long nasty ones... almost not sure what to think.

This was not the easiest of treatments out there now but tolerable given the shorter cycle. And the results are surreal. Not quite feeling  as grand as I hoped, sx still lingering a bit I think, but overall feeling pretty well and maybe when the official SVR sinks in all the mental blocks will clear too.

For those of you debating on this TX, all I can say is my case was a more challenging one and glad I did it. There will be/are more alternatives but with the insurance game if this is your only option, go for it! But take it serious, commit to a healthy lifestyle, stay regimented with your meds and choices, clear your days of anything stressful (as much as we can anyways), sleep whenever u can, eat what you can when you can and I am sure the same result is within a 12 week reach. Side note here - I had been taking every liver aid and natural supplement I could find for 20 plus years (you name it I took it, to the tune of like 20 pills twice a day) and decided to dump them all this time, less a multi vitamin, to just let the meds do there thing. I am sure the supplements helped keep me working decent for all these years but I completely cleaned my system of them all before starting this TX this time.

Thank you again to everyone here. All the posts and openness was so helpful to know I was not alone. From butt issues to ribs rage... it was all here. My first two txs I did it alone and in the dark, thought I was falling apart. This time through, in a large part because of this site and posts, I kept my head in it and this site provided that support to get it done.

Thank you, 1000 times thank you all.

Sincerely,

Tony

Ps: I'll still be lurking and watching the progress of all, and odd to think that someday, in the not so distant future, the warriors of the HCV fight will be healthy retirees, the scars healed, and legends of year long Interferon battles looked at like medieval medicine... but that is progress and an awesome thing. To all our brothers and sisters before us who lost their battles, let them never be forgotten for their sacrifices and courage facing the dreaded non A non B hepatitis, no treatment abyss of not so along ago.

Hi Tony,

Congratulations on completing treatment and your continued undetectable reports! I remember how I felt weeks after treatment and was amazed how much better I felt. There are a few things that are taking their sweet time but overall, I feel pretty good! I hope you continue to show rapid improvement and I  know that the coveted SVR isn't far behind! Good luck...

Tig

Hello Tony, congrats on your 12 week Und result, you must be so pleased! 

Yes, quite often it`s only when we start to recover from the side effects of Peg/Riba that we realise just how bad we felt while on tx, even on a good day!

Great news, thanks for the update and best of luck with your next results and continuing recovery. 

Very well done...keep us posted!

Hello everyone.

Thought I would post quick update to my tx:

Week 12 came and went and with it so did all the poisons. It is amazing what passed a good day on tx. I really think I forgot what a good day was and how lousy Rib/Peg made me feel but 2 weeks post tx I think I am starting to remember. Been feeling pretty good, way less "agitated" by things and starting to ramp up the physical activity.

My 12 week blood work came back on Friday and was decent; CBC showed some improvement, normal LFTs less a high billirubin 5.2 (Dr is not concerned, yet) and most important my VL is still <15 NOT DETECTED. 2 more weeks to my 16 week which will be a real test to see if this tx took. Still a ways to go to SVR but 8 weeks of no detectable virus in a 12 week tx is pretty amazing after 30+ years of bug battles.

Wish everyone here the best and love reading about the SVRs and all the new tx out there with more coming. 

Take care,

Tony

Hi and welcome Tony.

Congrats on the 8w Undetected. Your present treatment must be a walk in the park compared to the old 48 week marathons.

The VL testing has pretty well been standardised. Several companies offer the HCV PCR test, but the Roche COBAS TaqMan v2.0 is the most common. Modern Labs have a LLOQ set at 15 i.u./ml with a LLOD of 8-12.

Only the TMA tests such as Quest's Heptimax can have a LLOQ as low as 5 i.u./ml.

The disparity between the liver biosy and the Fibrosure is not surprising. Believe the biopsy.

Best of luck for the rest of treatment. Cheers.

Hi Tony and welcome to the forum.  Many thanks for posting and do hope you will continue to contribute. First of all, congrats on getting that UND. Like myself (different tx) and others, you had to wait longer for that good news and I'm fully sympathetic with the week 4 disappointment you speak of. Main thing is getting there, though, and sustaining it over time, as you know.

I've also had stretches of time during treatment when I've experienced a strong sense of physical well being and (dare I hope?) mental clarity. Seems like it gets whacked back down eventually by the meds (mostly the riba, I presume) which I've been on for about 15 wks... ok, 14 weeks, 6 days, 6 hrs and 13 min. ;)  Nonetheless, looking eagerly forward to being clear of the drugs and finding out where I really stand.

Interesting your point about the trial RNA testing standards. Haven't heard that mentioned before. Maybe someone else could fill the info gap on that one.

Anyway, glad you joined us. Best of luck and don't be a stranger.

wayne

Hello,

First time poster, long time lurker. Great site and really great people here based on the posts and feedback; Super helpful to those of us lost in the muck that is tx, sx, new tx, new tests, etc. Thank you for this.

My short-ish story/experience that may help some of you doing the Sovaldi triple Tx:

As a GT1a FTNR w/ peg & rib 48 week poison back in 2001, after another 13 years I felt it was time to give it a go again. Figured the 12 week duration was doable. Started 1200mg Rib & 400mg Sov daily, plus 180mg Peg weekly about 9 weeks ago... OK, 9 weeks, 3 days and 5 hours ago. 

The good news the sx were not as bad as I remembered. Definitely have bad days and not super "fun" overall but manageable. Most noticeable is my Bili count nearly doubled to 3.8 (has always been high - suspected gilbert's syndrome) but eyes definitely went a shade yellow for a few weeks. WBC dropped to 2.1 and RBC and Platelets teetering on low level... so a bit more winded than normal. But nothing unexpected according to my Dr and we kept the Rib and Peg at full dose.

More good news is about 2 weeks in something felt better, hard to explain but as cruddy as the sx can be I felt good, really good (in a more holistic sense). Dont get me wrong still tired, short breath, coughing, and fluey (all the known sx) but inside something changed in a good way.

And to support that my AST/ALT was normal for the first time in almost 30 years at 2 weeks in.

More "good" news was my VL went from 3.8 Million to <15 IU/ML at week 4 but still detected. Which was kind of a bummer (actually huge let down after seeing all the 4 week UND on these forums) but Dr said that he was seeing this with many of his 1a FTNRs and believed Gilead trial RNA tests were not as accurate as the one I am using now. E.g. I may have been UND by their testing standards.

We agreed to stay the course and go for the 8 Week RNA test. I was also told that Gilead no longer recommended VL RNA tests until week 12... but IMHO if there was a viral breakthrough I'd rather see it at week 8 and get off the poison and wait another year or so for some of the better Tx coming.

The best news so far, my 8 week VL just came back and was... <15 IU NOT DETECTED! A huge lift after the self induced  "disappointment" of week 4. Still a few more weeks to go and a long way from SVR but happy with where I am at and the decision to treat.

Anyhoo... just thought I would share some of my experiences and feedback from what I consider a superb transplant heptologist for anyone else in my category (1a FTNR). Regardless if this treatment results in SVR my Dr was very optimistic and stated emphatically that I will be virus free by 2015.

Take care and keep up the fight.

Tony

My Stuff: HCV 30 years, Liver Biopsy 02/14 - F1/A1 , Fibrosure score 09/13 - F4 (yes completely contradicting to the actual Biopsy),  failed peg/int 32 weeks 2001. VL 3.8Mil to <15 IU NOT DETECTED @ week 8 w/ Sovaldi, peg, rib triple tx.