Hep C Discussion Forum

Tig · Admin

RE: GT3 relapser on a new ride (Sof+Dac+Riba) :)

Loopy Lisa · Guru

Zlikster, well done buddy, I was just asking what happened to you! That took some doing to get those drugs, it looks like you pulled it off!!! I am happy to hear you lost a lot of the fatty liver issues, that was one of the issues on your last treatment. I finally got my go ahead after all this time for Sofosbuvir and Daclasvir, no nore riba for me ever again - touch wood. Let us know your UND results once they arrive, I am curious as a G3 myself how that pans out.

Smiling at your success,

L

Zlikster · Guru

Hey basser,

i was this time only on 800mg of Riba (compared to 1000-1200mg while on peg). Beside emotional sensitivity/rage episodes, which i knew back then that was riba sx, i thought smell sensitivity and urge to vomit was more from peg, now i know it was riba. Tho as i mentioned i would still take whatever dose or Riba over a single peg shot cause peg's ototoxicity ruined my left ear hearing for good seems so.

in other news, EOT+w2 blood results (still waiting for EOT PCR tho). ALT 16, AST 23 like a baby liver ;) All other parameters normal, except glucose (6.2).

in other BIG news, Bosnia will soon get ViekiraPak via healthcare prescription. Seems Abbvie has managed to get in our market somehow. I wonder what price did they offered. I doubt our failing healthcare sys can afford price of Viekira like in USA. They have sent 14 doses of Viekiea Pak to treat cricitcally ill patients and results are 100% SVR. Now i realise why my doc was against Gilead's generics from India, she might have been "bought" by Abbvie's lobbying team.

basser · Senior Member

i agree with you mate.everyone blamed the sx on interferon but can say that my last lot of meds sof/dac/riba it as the riba that kicked the stuffing out of me for sure.congrats on finishing mate am sure you will be svr .keep in touch.all the best william

Zlikster · Guru

Cheers Syd, Jill, Gracie, Jimmy, Tig, Malcolm, Mike :)

@Syd, 24w of Sof+Dac will do it's job, i wish i have opted for at least 16w. Too late now. At least u won't have any sx (no Riba!) ;)

@Malcolm, tell me about it. i got mate who works in a lab. He said, buy hcv assay/primers and i will do it in a day :)

@Tig, I think i will go only for EOT and EOT+12w PCR and do ALT/AST on EOT+4w EOT+w8. Last time it was a good (or better to say bearer of bad news) indicator of relapse.

Anyone have any (placebo) supplement advice post tx? ;)

no celebration until EOT+12w PCR results, so i will lay low :D

best

-- Edited by Zlikster on Tuesday 29th of March 2016 05:26:36 PM

Cinnamon Girl · Guru

Hi again Zlikster, I was wondering where you`d disappeared to!Â Great to hear that you`ve finished your tx now, very best of luck with your results, when they finally come through for you!!

It`s been a long hard journey for you and we`ll all be so happy when the waiting is over and you get that prized SVR!!

No more riba for you, ever again! !Â smile !Â

Â

Sydhanrahan · Guru

Hi,Gracie,

if you finished Harvoni on Dec 19, isn't your 12 week waiting period up???

Or have you had the bloods taken and are waiting for the results?

It does seem like an incredibly long time whike you're actually in it doesn't it?? No doubt afterwards it will gradually fit into our memories as a normal 24 plus 12 weeks.

Good luck.

Syd

Gracie · Guru

Speaking to the choir... I'm still waiting .... And waiting .... And waiting .... Zzzzzzz

Congrats on finishing! Its nice to not have to obsess about those darn pills.Â

Â

Sydhanrahan · Guru

Hi Zlickster

I haven't seen a post from you in a long time - they are probably here, I just can't see the trees for the forest.

So glad you have reached week 12 and have finished. You might remember I was on the same drug combo as you and started 4 weeks earlier. During treatment, because I have decompensated cirrhosis, one of the doctors insisted i should do 24 weeks. I had the meds lined up, but just couldn't continue on the riba. So I am just taking dak/sof now and I'm up to 16 weeks. I had a test at week 9 which showed SVR but doubt they will give me another one before week 24 and then it will be another 12 weeks after that.

So I know how you feel about "the wait" and hope that when you get to the finish line it will all have been worthwhile.

Cheers and good wishes Syd.

Xx

mallani · Guru

Hi Zlikster,

Buddy, I'm growing old waiting for your SVR post.

Fly to Brisbane and I'll get one done in 10 hours. Cheers mate.

wmlj1960 · Moderator

Â Congrats on finishing treatment Zlick. The 12 week wait hasn't been too bad for me (9 days until EOT+12 test) because I haven't been counting the days (until now lol). Try not to count but just keep in mind you will have a big SVR celebration sometime in the near future. And we'll sure be here to help you celebrate. Today is the first day of your HCV free life. SVR 12 test will just be the proof.

Tig · Admin

Hey Zlick,

Yes sir!!! Congratulations on finishing treatment! What a ride you've been on Brother... I know that you've crossed your t's and dotted your i's, so now you wait. I hated the wait, but you responded early and I have little doubt that you remain that way. Two days of no Riba? Big deal, I wouldn't worry about that at all. The testing process sounds like a real obstacle course, what's with that? Any chance you might get a EOT 4 drawn somewhere? Hopefully the time will pass by quick, find a way to put it out of your mind (yeah right)! Come summertime you'll be celebrating and we'll be anxiously waiting on the good news! If you get real anxious, I'll break out my Magic 8 Ball, everyone here knows it knows..... It hasn't let anyone down yet!! Good luck buddy, we're thrilled you made it to the finish line. All you're waiting on now is your reward!

JimmyK · Guru

Congrats on the final dose. You are going to do great and the next 12 weeks may seem long but fact is it won't be. Took a long time to get here today and the rest is simply life.

JimmyK

Zlikster · Guru

Had my last batch of pills today :) (i lacked Riba pills for last 2 days tho)

I was UND @ w8. It took em 3 weeks to do PCR. I talked with lab folks and they said they need at least 4 samples to do test (i was 3rd sample for almost 3 weeks!). So i've waited for a loooong time. So long, that i could have been almost 4th sample with my EOT PCR :)

Anyways, as i thought my hepa was against extending tx. So now it's the paranoia waiting time for next 12w.

All in all, this tx compared to peg ride is much smoother. As i mentioned, if there wasn't Riba added, i wouldn't know i was on tx. Now i know what are pure Riba sx. I thought vomit reflex (smell oversensitivity) and sickness was from Peg, it is instead sx from Riba. Rash here n there, emo/depressive episodes, here n there riba rage. Still all much smoother then peg :)

Agree citkid, hope we never have to worry about sub type again :)

How is going Canuck on that mighty trial? Any PCR results in?

cheers all!

citikid · Newbie

Hi Canuck.

For what its worth, I was classified 3A back in 2007 in New York. When I moved to California in 2014 I was only classified Geno3.
When I asked my Gastro about it he said that there is no treatment difference for the Geno 3 sub types so they no longer pay for the sub type classification when ordering the Lab work.

I suspect that if Geno 3 proves to be problematic with the new meds the Doctors and Pharmas may start paying closer attention to it again. Or, on the other hand if the new drug combos are successful and the Geno 3 cure rates are as high as they claim in the clinical trials it may not be necessary to focus on the Geno 3 sub types any longer.

Im going in for my 12 week Post treatment Labs in a few weeks. So Im hoping that I wont ever have to worry about what sub type my geno is ever again.
:)

Canuck · Guru

Hi Zlick,

Yes, that's the trial I am trying to get in to - similar to tk36flex's and webtomass's trials - but don't know yet whether I am in, or not, yet. I've been posting over in "Awaiting SOF/VEL/GS-9857".

Took me about 40+ years to get to F3 (unbeknowst to me) - not much effort was required to my part to get there!, it's only taken me about these last 4 months to creep into F4. Ya, early detection is a good thing, and early treatment better! (if people only knew they needed treatment, and got early treatment, and, appropriate treatment - that would be mighty fine thing!)

Hey, funny that, "just" being a GT3, maybe there IS such a category, I must have missed learning that, I thought we were 3a/3b's - I'll have to look that up - interesting that "no" sub-type.

Terrible state of affairs, when people are forced to save themselves and procure their own drugs, and still be afraid of revealing they do so, so no one gets into "trouble".

Very happy for you, how well you have done for yourself, and all your good numbers.

So ... your 4 week <12 detected was done mid-Feb? So ... your next VL draw will be?, lessee ... at 8 week mark (about mid or end of March)?

So, they giveth and then taketh away your fibroscan?? Unreal. Good thing you can safely guess you are at a low F level, with out having to be subjected to needle biopsy. I agree with you in the reluctance to warm to an intrusive procedure, but I would if I had to, but I too can fairly accurately estimate where my approximate F level is standing.

Keep up your excellent work. Canuck

Zlikster · Guru

Hi Cancuk,

you made it to get in on that NCT02639338 trial? That combo is mighty good (as you can see by others on it posting results here)

How fast did you progress from F3 to F4?

I got from Bill (on this forum) few original Sovaldi pills (his leftovers) that i have sent (together with MyHep generic Sofosbuvir) to really nice people in IRB institute to do NRM spectroscopy (and it ineed is a same Sofosbuvir API in both of em). So i am really grateful to what this forum has provided to me. Not to mention how great response and help i had from pharmacists and friends who work in labs. They were all appaled by price of these life saving DAAs and they were all more than willing to help me obtain generics or APIs.

keep us posted! ;)

best

Canuck · Guru

Hi Zlick,

Oh, I see. They sure don't make it easy for us do they!

Re: billym, he has not posted in a while, but early on when I first joined the site, I did note who of us were GT3's, and what treatments they wanted or got.

I stuck up some conversations with billym, really nice fella.

If you want to read his thread on this site ... go to "new members", go to "about page 3", he first posted there under title "Hi everyone, I just joined this forum and currently treatment", last post is dated Nov 15.

He too, like many, had trouble getting drugs and in a timely fashion.

Once, some well meaning person said to me that they knew of where some leftover drugs were (totally wrong drugs and not enough to do anyone any good by themselves), but I was warmed by his offer - so, know this, if I too had a pocket full of drugs, and I was allowed to ... (like if I was a doc and it wasn't illegal!), I too would give you whatever you needed dear. Miserable systems keep so many limited between rocks and hard places. Not right.

Be VERY happy, your numbers DO look very good! smile Canuck

Zlikster · Guru

Hey Cancuk :)

For fibrosis, last time i have checked (via Fibroscan) was year n half ago (still F1) and i haven't done any PCR for the same amount of time, until 2 months ago just before starting this tx. Usually had vl baseline round 30k IU/ml (130k just after relapse, tho back to 30k soon). This time it was 2.5mil IU/ml. So thats from log 4.4 to log 6.4 jump, could it be usual viral kinetics or it started to munch my liver more than usual? Fibroscan is not any more available in my country, so i am stuck with FibroTest or biopsy to reevaluate my fibrosis condition. I might do Fibrotest after tx, not that keen on biopsy.

As for subtype, folks at lab where i was doing genotyping, said i am GT3, no subtype, so that means GT3a i presume.

Can't remember Billym? Is he cirrhotic so he opted for 24w tx?

@Tig, good shot, but with Peg+Riba for 24w was a good shot too. I wan't to up the chances to a best shot ;) As for mail order, it would be from same guys in Sydney i got present meds, so it's safe. Issue is i am in a catch22 regarding imports. My doc can't give me prescription cause those meds are not approved by EMA, but she will treat me with em. I need prescription at import customs otherwise i might not be able to get em. So i am left with options of smuggling via someone who is getting here from AU, India or Bangladesj or obtaining it via some other chnl (eg. maybe via 3rd party importers)...or getting some corrupted gastroenterologist to make me prescription :)

best

Canuck · Guru

Hi Zlick,

Thnaks for explaining, I understand better now. You do have so many things on your side, low F (to start with), the riba, and now the great low numbers you have already shown. It all sounds good for a 12 week cure!

Billym (do you remember him) - another GT3 (3a if I recall correctly without looking), he should have just finished up 24 weeks on sof/dac, I've been chatting with him, his 24 weeks was a very long haul but his numbers are super too.

Did I miss seeing your sub-type? Are you a 3a, or a 3b?? Just curious, if you don't mind.

Tig is a good and objective observer and forecaster, it is rational that you are already undetected, I agree with his thinking about you.

Canuck smile

Tig · Admin

Hey Zlick,

These are different times and the drugs are improving all the time. You were so low last time, I have no doubt your undetected by now. 12 weeks of it is a good shot at it.

I wouldn't want to see you lose the medication and money trying to buy it by third party and then mailing it. Not worth the risk. You'll get this, I have faith. Just hang in there and good idea staying home when the Riba kicks in. Check in and let us know what's going on when you hear something.

Sydhanrahan · Guru

Zlick,

the figures do show a remarkable clearance rate for non cirrhosits on 12 weeks.I have looked back to try to find your fibroscan results before treatment and can only see your bloods. The alt and ast look wonderful to me - mine were fibroscan 40 plus, ast and alt 400's and 200's. So I think you are working with a much less damaged liver than me.

on the other hand your 3b genome type is harder to clear than mine. It's so hard putting your life in the hands of someone who, without thorough statistics, appears to be making the decision on an almost arbitrary basis. At the same time, on RIBA, you doubt your own ability to be rational and objective.

My gut feeling is that you will be undetectable 12 weeks after treatment.

When does your 12 weeks finish? Would you have time to get a months supply of dak from a Au. Would be happy to help if there was anything i could do.

Like you, I didn't want to get on the wrong side of the people treating me, so it all seems overwhelming.

Thinking of you and know that if you can't get access to Dak in time just relaxing and trying to stay positive is the next best thing.

ps.,thanks for your kind thoughts Canuck.

Zlikster · Guru

@Syd, thats great! So u have managed to persuade em for ext tx!? :)))) Riba rash will pass don't worry, as for Riba rage, well i am in pretty much in total social isolaton while i am on tx, so i can't harm anyone with my temper. Not that i advise for all people on rbv to do the same, but from my experience i prefer it this way. I only see gf/friends other humans on weekends :)

@Canuck,

Considering i was 51 IU/ml @w4 while i was on Peg+Riba tx, so i've kinda expected a bit more @w4 on Sof+Dac+Riba...

I can not obtain more Dac (it's risky to order it via post). I was lucky i had friend who was visitng Sydney AU and it was easy for her to bring me meds, but i do not think i can manage to obtain it from AU now in time. Even Riba might be a problem, but nevertheless much easier one (i can buy it here, tho pretty expensive compared to generics).

I think my hepa won't push it for extension if i will be (and i am prolly already now) UND @w8. I wish i could just extend for 4 more weeks with Sof+Riba, just to up my chances a bit, but then again i do not want to get in conflict with my hepa.

best

Canuck · Guru

Hey Zlick,

Fellow 3a here.

Ya - what Linuxter, Tig and others said! Great numbers.

Re: your search for good or ideal supportive trial "data/numbers" for various sof/dac/rbv lengths/combo's/outcomes (for 3a's) ... I too had previously scoured all of this and found the same lack of concrete info.

If you decide you want to take treatment longer, then ...

1) if you have been on sof/dac/rib, then I am not sure why you would want to drop the dac portion and do sof/rbv alone for an addtional 4 weeks. Why would you not extend all 3 drugs?

2) Syd's tactic (in how she discussed the issue of extension with her doc to reach a consensus decision) was very effective - (basically) it went something like "nothing indicates you need it" was his stance, and her correct reply was "show me that I do not". Now, given, her doc's decision may have been based on many factors which would include her degree of cirrhosis ...

I think you mentioned you do not have a high degree of cirrhosis, BUT, just on principal, because you ARE a 3a, that speaks for itself (including the lack of trial outcome data), AND, because this is your current second attempt, these are quite worthy considerations your doc should/will surely weigh to ensure you get the length right.

Just sayin'! ... but what do I know! (not much). smile

If I were you I would be feeling very happy with my numbers, and i hope you will achieve more relief from worry when you see the doc again and at the next PCR result. Your comrade in arms, Canuck

Sydhanrahan · Guru

hi Zlick,

not sure if you read my other posts but just wanted to say hi. I am on week 10 now and was allowed to extend my treatment to 24 weeks. My viral load test at week 4 was 115.

i had another one done at the transplant hospital last Tuesday but havent received the results yet.

Like you, I am hideously itchy. I have a rash all over my back which is the most usual place but it can be arms and legs too. Also still feeling really tired - my haemoglobin's dropped to 100 now so they have lowered the dose of riba from 5 to 4. I am very irritable - the neighbours have a dog which barks for about 12 hours a day and I want to go over there with a mallet. I love dogs and normally it wouldn't be an issue. Also normally I am out and about more but I don't really want to socialise with many people. Only the people on this forum have any idea about what this journey entails.

good luck - I too read the 12 and 24 weeks study and am trying to write it off as a small study. I know I am very sick and this is my do or die chance of a cure. so just better stop whingeing and be very grateful that the treatments appeared before my liver completely failed.

good luck with it all

Syd

Linuxter · Guru

Hey Zlik,

Sorry to hear you've got the Riba Rash, I've had a few small issues but no more than normal really (My atopic dermatitis crops up nearly as soon as I get it calmed back down, does this on a regular basis).

I think I'd be happy with those numbers, isn't it the degree of drop that counts at this early stage?

Hang in there, stay positive ... you got this!

Dave

Zlikster · Guru

Yeah my hepa seems to be happy too :) Tho she said there is no need talk about extending tx, until she sees w8 PCR. I presume she won't be for extended tx if i will be UND @ W8, but i am pretty pushy about extending it, we will see.

They do not have anymore Fibroscan at my hospital (i don't even wanna know what happend with brand new Fibroscan there i have tested 2 years ago) :/

hope everyone is doing ok, now back to riba rash n crankiness ;)

best

wmlj1960 · Moderator

Going from 2,403,846 to <12 in 25 days is pretty damn awesome in my eyes. I'm impressed and happy for you Zlick. Looks to me like the medicine is kicking that geno 3 dragon's butt. I too suspect you are UND by now and expect continued success. Keep up the good work!

Tig · Admin

Okay, just minor difference! The few (very few) stragglers remaining were enough to register on the test. You're right, these new tests are so ultra sensitive, they can be annoying! Back a couple of years ago, the limit was 100-150 and below that we were often considered undetected. I have no doubt that you're undetected by now. If you can get the extra 4 weeks, I'd do it too. GT 3 is a hard one and doesn't give up easy. If anyone knows that, it's you. Let us know what your Hepa says, good luck!

Zlikster · Guru

12 IU/ml - detected :/

but i know, since i have visited lab (folks there were ultra pleasent and showed me around) that Abbott RT PCR has lower limit of 12IU/ml, just my luck to be on the damn limit :)

waiting for my hepa now, i wanna extend tx for 4 more weeks with Sof+Riba.

cheers!

Tig · Admin

That sounds like an undetected result to me. You didn't mention anything but 12 IU/ml, so I'm going with undetected til you say different. That's excellent news! Sounds like the real deal this time. I'll keep looking for results with better participation numbers. As long as you're getting early results like this, I wouldn't worry about it! Good luck...

Zlikster · Guru

cheers Nirmalee, Gracie

yeah, i am not that worried right now mucho ;) but if URQ pain starts to bother after tx i will be very anxious, cause of previous experience with relapse.

@Tig, just looking for GT3s non cirrhotic, treatment exp. 12w and 24w Sof+Dac vs Sof+Dac+Riba. Plain and simple, but damn hard to find a normal sample in any trial (really anything below n=50 is not serious enough). All i have found was pretty lousy samples (n=1 hahaha, n=5)

RESULTS ARE IN!

pre tx VL - 2,403,846 IU/ml (bit worried, my usual baseline is 20-30k IU/ml)
25th day of tx - 12 IU/ml (damn sensitive Abbott RT PCR, lower limit is 12 IU/ml!)

:)

Gracie · Guru

Zlick,

I had no URQ pain for the first month of harvoni, and was really happy about that. Then in the second and third month, I did have pain. Not every day, but definitely there enough that I thought I had relapsed. Even had some since and am glad to report that my 4 week past still shows UND. While having cleared the virus, at least up until 4 weeks post, I still have significant liver damage. The liver trying to heal, and just having scar tissue would be the cause I would assume. It will take years to heal, and I'm confident the URQ pain will subside the more it heals.

As a double treatment failure, I totally get the nervousness that feeling brings in. But know it's not uncommon to happen, even with SVR.

Tig · Admin

Zlick,

I did a in depth search and the largest sample I could find was around 100 per arm. With GT 3 being about 20% of the population, I guess the researchers wanted to address the largest population first, the GT 1's. IDK.... The ALLY trials have the most up to date data I can find and it's spread out. What are you looking for specifically? I found a bunch of stuff, but I'm sure you've seen it too. The rates of success seem to average around 90% and you're right, the longer 24 week treatments with Riba don't make a lot of sense when the rates of success drop.

dragonfly · Senior Member

If it's any help I did the same programme and went from decompensated to compensated with the disappearance of ascites. I went negative in the 1st week so even though I hate RIBA it certainly did the job in the combo.

Good luck,

Nirmalee

Zlikster · Guru

Cheers Tig, tho again confusing results (for my case) and small samples.

Only trial from all those mentioned in pdf that comes close is: AI444040 (Daclatasvir + Sofosbuvir +/ - Ribavirin for HCV GT 1 - 3)

In rx naive (GT2/3 n=14 doh!):

24w
Dac+Sof = 93% SVR12
Dac+Sof+Riba = 86% SVR12

another semi case for Riba not doing well on longer run (eg. on 24w)

I just can't find decent study with GT3s treatment experienced, non cirrhotics, w12 and w24 Dac+Sof+-Riba :(

Tig · Admin

Hey Zlick,

Have you seen this report?

http://depts.washington.edu/hepstudy/presentations/uploads/160/declatasvir.pdf

Zlikster · Guru

Yeah, thats what i said, i do not wanna look at silly small samples (n=5, cmon!). My main focus now is that PCR result @ w4 and decision if there is still some virus detected in blood. I got one more bottle of Sof and i can buy one more bottle of Riba too and extend tx for 4w more (-Dac), i do not want to messup this tx! :)

As for RUQ discomfort, it's weird. Just my subjective observation. I had that issue for years (hence at the end i got to HCV diag), while on Peg+Riba i can't recall i had any pain there (was miserable enough from peg tho), then in EOT+w4 i had again pain there, then got my blood result (ALT again elevated), next it was hard news with PCR confirming i've relapsed. So i get pretty anxious when i get that pain there :)

Syd, go for 24w if you can. As for Riba, as i mentioned i am pretty confused with results. Seems it's helping for cirrhorics if dual DAA tx is 12w, but strangely not helping if it's 24w. There must be some better studies with normal large sample.

Do you still get pain in right upper abdomen? When do u expect LFT results? I usually get it in cca 30min (i do it in private clinic tho).

best

Tig · Admin

Hey Zlick,

I'm with Malcolm on the study size. One patient can alter the outcomes in them, so the accuracy could be very skewed. I would expect your week 4 VL to be considerably different. Hard to say if you'll be undetected, but wouldn't be surprised. Just stay the course and concentrate on all those things you can do to make things click. Treat yourself right and do your best to enjoy the ride.

Lots of reports of RUQ discomfort. Hard to narrow it down, but there has been several complaints of bloating, gas, etc. It's a documented issue, so I would start there and see what kind of relief that might bring. I had problems when on the triples, constipated on a number of occasions too.

Let us know when you get your tests back, good luck!

Sydhanrahan · Guru

hi Zlik,

i had quite significant pain in right upper abdomen for first weeks of treatment. Felt like a battle was being waged there. I only got a few blood results from hospital on Feb 4 but Dr did recommend 24 week treatment. I will need the medications on 4th March and they go on the PBS on 1st so am hoping it works out. I checked out the study you referred to but as I'm genome type 2 and cirrohtic, not sure if they are relevant to me.

I went to my own GP yesterday for LFT and hopefully will be able to post it soon. Also worried about kidney function which has virtually been forgotten. My GP is very thorough and I'm happy she's going to keep an eye on it.

Good luck with your progress.

Syd

mallani · Guru

Hi Zlikster,

Forget looking at results for small studies.

Ribavirin will ALWAYS help despite what the numbers are. It has anti-polymerase activity, and seems to decrease RAV production.

Good luck for the VL mate.

Zlikster · Guru

Hey Tig buddy ;)

nah, hepa told me not to worry, i got plenty of space left (think i will do as i did on last tx, RBCC till 3.7, HgB till 105). As for Sof+Dac vs Sof+Dac+Riba for noncirrhotics GT3s there are questionable studies/samples (somewhere even n=1 wtf). I am waiting for PCR results from w4. If it shows i am detectable, i will try to push my hepa to extend my tx with Sof+Riba for 4 more weeks (if she is ok with it), if she disagrees, i will have to decide on my own will i extend it.

btw, check this study: http://fixhepc.com/media/kunena/attachments/391/CCO.pdf and see the results for noncirrhotics with w24+-Riba. w/o Riba n=29 29/29 SVR (100%), while w. Riba n=5 4/5 SVR (80%). Lousy sample, but still it gets more interesting with cirrhotics. Seems there is some data backed evidence for Sof+Dac 24w being better alone than with Riba added.

Speaking of, anyone had pain below right rib during tx? I mean i had it for years, i presume from hcv, but I can't recall i had it while on peg+riba. Might be it's not correlated with liver/hcv at all, but i had it last nite and 2-3 times more during last week. Maybe liver tenant is not happy with all those meds blocking it's replication, so it's doing some revenge damage on my hepatocytes before it's gone :)

cheers!

Tig · Admin

Hey Zlick,

Stay on top of it! I thought you had already been reduced and with numbers like that, there is no need. I would let the RBC's drop until consideration for rescue is considered. A little Procrit will carry you through a few months if it even becomes necessary. Cross that bridge when and if necessary. Your other questions, I will defer to Malcolm. He's the expert on that and I know he'll have a good answer for you.

I don't know if you have this article on Sov/Dak, but thought I'd pass it on. It's informative and might provide you with a few more bits of data.

http://www.sciencedirect.com/science/article/pii/S0168827814003055

Zlikster · Guru

@Malcolm, Tig

Not yet any talk of reduction, i am just speculating. Of course i won't allow it. Last tx (peg+riba) i was fighting to stay on full dose, although i was receiving larger dose of peg and riba to start with, compared to my weight. Weight based i was supposed to be on 1000mg Riba, but i was on 1200mg. Similar with peg i was supposed to be on 120mcg i was receiving 160mcg (if i rembmer well). This time, my hepa told me go for 800mg from the start, not weight based, yet just to help "those indian generics" (they are actually chinese APIs, prepared in Australia btw, but hey). I did not argue. Tho i am still confused of (lack of) data coming out of trials with Sof+Dac vs Sof+Dac+Riba for noncirrhotics. Is Riba actually helping when Dac is included with Sof or it's actually making it worse? I was hoping Riba would be a good addition to stop mutations/RAVs, but data from trials has been really confusing.

I won't allow Riba reduction above 100 Hgb...Not sure how far to push RBCC (last time it was down to 3.7). I will try to persuade my hepa to extend tx with 4 more weeks of Sof+Riba (only have Dac for 12 weeks) if that will help my chances. Does anyone thing thats a good idea? 12w Sof+Dac+Riba then 4w of Sof+Riba?

@Syd,

No word yet from my hepa. I doubt she will reduce Riba dose now, too early. As i mentioned in last tx, she reduced Riba when my Hgb was below 110 (tho i wanted to push the limit to 100). From her experience, she told me that more toxic Riba is (to RBC n Hb) she had better results regarding clearing hcv. I have tablets on my own disposal, since i have bought everything myself (i am not even insured anymore) so i can continue even without her approval.

Fatigue wise, same here. Last time i've managed (if u omit peg sx) to stay pretty uptempo first 3 months, then it was sharp drop in Hgb and RBCC and big lack of energy. Now i have better RBCC and Hgb to start with, but i feel less energetic than back then. Not sure why. Yeah skin issues are usual with riba. Had em last time, now too. Diarrhea too. I do remember tho that in 2 weeks post tx i was almost completly back to pre tx energy levels :)

cheers!

Sydhanrahan · Guru

Hi Zlick,

others are saying your tests look good so that's great. can't add in any thoughts re Riba reduction except I'd be listening very carefully to moderators here. Their knowledge seems vast. I'm currently on 1000mg Riba daily but think the dosage is weight based and I'm quite small.

i had my bloods taken yesterday and will hopefully get them when I go to clinic tomorrow.

My major symptom is fatigue - I just spend so much time lying down. Also very itchy skin. Aches and pains when I do get out, I had that before but not to this extent. Not sure whether it's the disease, the treatment, old age or just consequence of being too sedentary. Also food tastes different and I have a pain in my stomach if I haven't eaten so I am putting on weight.

There are a lot of symptoms which have abated since I have begun treatment - crampsin legs and hands, diarrhea, easy bleeding, loss of appetite, ascites seems to have improved.

its a journey that's for sure.

will put up my bloods tomorrow and good luck in your Riba dose decision. Is it a choice or do you have to follow dr? If the guys here are saying your tests aren't too bad it might be worth hanging in there with initial dose level. Do you have the tablets at your disposal?

Syd

Tig · Admin

Hey Zlick,

I agree with Malcolm. Your numbers look great! Why in the world would she reduce your Riba with a 144 Hgb? I've seen some mention of lower doses, but that's a big reduction. The RBC's are starting to drop, as expected, the rest are stellar!!

mallani · Guru

Hi Z.

Buddy, don't let them reduce the Riba dose. Over here, anaemia is defined as a Hb< 100. You will remember I spent my 48 weeks with a Hb of between 70 and 80, with no Riba dose reduction.

Even though Riba is just insurance, in case Sovaldi can't handle any NS-5A RAVs, you want to get it right this time. Last time, there was too much stuffing around with your Peg and Riba doses. You may get tired, but put up with it!

Are you really just on 800mg/day? I'd want 1000mg at least, preferably 1,200mg.

Great ALT by the way. Cheers.

Zlikster · Guru

Hi Matt,

i do not want to say anything re ALT/AST, since last tx where lab numbers were great too, then i've relapsed soon after tx finished...

Just checked my old blood chart. My hepa did let me fall much lower before any Riba dosage reduction. RBC as low as 3.7, HgB as low as 107 (the she reduced Riba from 1200mg to 800mg), so i guess i have a lot of space left :)

cheers

Matt Chris · Guru

Hey Zlikster

Sorry I missed your start of treatment, but your Lab numbers are looking great. It's almost like having your own personal clinical trial with you calling most of the shots.

You surely are a ground breaking pioneer voyager to take on this global undertaking. Hoping all turns out well and the rest of the world membership can benefit from your knowledge wisdom and courage.

Matt

Zlikster · Guru

Hi Jill :)

yeah, definetly no munching sugar pills with Riba :) I thought anemia won't hit me until 2nd or 3rd month of tx, like it did while i was on peg+riba. I was back then on 1200mg daily compared to just 800mg now. Weird. At least HgB is still ok :) Hopefully i won't have to obtain Procrit. Not sure what is lower threshold, last time i think my hepa slashed my Riba dose when i was 105 for HgB if i remember well. To be honest i feel tired a lot more then i thought i would be @ w4. Anyways, still prefer my anemia than extreme neutropenia i had from peg ;)

cheers

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