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TOPIC: Genotype 3's info, updates corner

Genotype 3's info, updates corner 1 year 5 months ago #5310

  • Paul-Jarman-facebook
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Hi mate I know exactly where your coming from I'm in a very similar situation to you. I'm only going to take 6 weeks of Riba to help it along it's summer here and the rash is starting to really give me the shits + my fuse is getting shorter but I will manage. I chucked the Riba in the bin a few days ago only to rescue it the next day before the garbos got it :)

My feeling is this, I don't want to have to do this again and am extending tx length and adding the Riba for insurance. I don't care if it's a bit of overtreatment. If it's some consolation mate after 8 weeks I feel pretty good especially in the mornings the worst sides on the DAA's were in first 2 weeks. Good Luck
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Genotype 3's info, updates corner 1 year 5 months ago #5311

  • Vororo
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Hi MuirMackean,

I am not a doctor, so best if Dr James sees this and can advise properly.

But to give a quick answer, if the ribavarin is giving you a problem, just put it to one side.

With Sof+Doc you already have the right combination for a good "log-kill" on 3a, meaning the amount of virus will go down by a half every few days. You are starting from a low VL, even on a log-scale. And your liver enzyme levels are good. Also, very few side effects are being reported with just these two.

The main thing is to ask your Dr for a viral load blood test ("PCR" or "VL") after 4 weeks. There is a very good chance you it will show zero or very low levels of virus. If so, you can probably just forget the riba and stay with the Sof+Dac.

This treatment really zaps the virus fast, but if your liver is hard you need to keep going so the treatment will soak through to kill off any stragglers as well.

Some studies indicate that adding riba gives a slight edge. But with today's prices for generics, if anyone really has a problem clearing the virus, the easiest way is to continue for another 3 months on Sof+Dac.
Diagnosed Jan 2015: GT-3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.
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Genotype 3's info, updates corner 1 year 5 months ago #5335

  • Gaj
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Hi MuirMackean,

I agree that you need guidance from a doctor but a couple of thoughts from my experience for what it's worth:

- You had Peg/riba previously. How did you handle that and how does this compare? May give you a baseline of where you are at now?
- I started on the Sof/Dac which I found very speedy/adrenaline feeling for first week or so. I added Riba at two weeks (not planned just availability/logistics) so missed the combined initial effect which could be what you are experiencing.
- after 12 days on riba I have had some insomnia the last couple of nights. Skin is itching now so am using sorbolene as moisturiser. I find I am very emotional, no rage but not a lot of stress ATM, however I will be avoiding movies about small furry kittens for the immediate future.......and I'm a dog person, most definitely NOT a cat lover! :ohmy:

As Paul says, I want to make sure I clear this time so any advantage I can take I will. But I also have cirrhosis so that factors in.

Best wishes for clearance and let us know how you go.

G
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17

And I couldn't wait to get on the road again
On the road again, on the road again!
- with apologies to Willie ;)
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Genotype 3's info, updates corner 1 year 5 months ago #5338

Hi this is Sharky00 for some reason my old login isn't working. To Riba or not to riba well after ALL MY READING & believe me I read everything I could before starting my treatment. In the end I went with my specialist & did not do it. At the time i said why not ( considering I am F4 ) he said well we will see how your treatment goes but we want to keep the side affects down. At that point in time the best studies said it gave you a slight edge.
Since then the water has cleared a bit, the main thing to remember is this is all very new, there is very little good data & certainly at the time I had to make my treatment decision even less, things are moving fast.
The upshot for me is it was the right decision. The latest results which are from 412 3a f4 patients showed riba gave no additional help but added serious unnecessary sides affects. Discussing the these most recent results with my specialist he said that time will tell but yes it is beginning to look like for 3a patients with high F scores it is the lenght of treatment ie. At least 12, 16 better 24 best not adding riba which just makes sticking with it harder for no gain. Once again I think this is just part of the early days of learning. I worked for me in 7 days of sof/dac my virus is undetectable & my ALT is the lowest score I have ever had in 24yrs of testing at 11. I intend to do 24 weeks as I have no side affects except the 1stweek very mild & that is what the testing is showing is working for someone like me with F4.
Regards & good luck everyone Angus
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Genotype 3's info, updates corner 1 year 5 months ago #5342

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We are quite fortunate now in that if it doesn't work we can have another crack with the generics but for longer. The main issue is we don't really know when ALL the virus is eradicated. It may be at week 7 for some or 1 week after treatment ends. We may fall 1 dose short of killing the last bastard but lets hope not. Achieving UND whilst on treatment is the first hurdle cleared but the big one is a SVR @ 12 post tx.

For those of us who have a crack before, second time around is a bit more daunting psychologicaly. It's fantastic to have all the professional guidelines, trial study data and informed opinions but ultimately we have to feel comfortable that we are on the right track for us as individuals.

I only rifled through my rubbish to snatch the Riba back as I was worried that if I relapsed I would blame myself for not adhering to the plan.

The Riba isn't a big deal and the rash is tolerable for now.

cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Genotype 3's info, updates corner 1 year 5 months ago #5343

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Angus-Holley-facebook wrote:
Hi this is Sharky00 for some reason my old login isn't working. To Riba or not to riba well after ALL MY READING & believe me I read everything I could before starting my treatment. In the end I went with my specialist & did not do it. At the time i said why not ( considering I am F4 ) he said well we will see how your treatment goes but we want to keep the side affects down. At that point in time the best studies said it gave you a slight edge.
Since then the water has cleared a bit, the main thing to remember is this is all very new, there is very little good data & certainly at the time I had to make my treatment decision even less, things are moving fast.
The upshot for me is it was the right decision. The latest results which are from 412 3a f4 patients showed riba gave no additional help but added serious unnecessary sides affects. Discussing the these most recent results with my specialist he said that time will tell but yes it is beginning to look like for 3a patients with high F scores it is the lenght of treatment ie. At least 12, 16 better 24 best not adding riba which just makes sticking with it harder for no gain. Once again I think this is just part of the early days of learning. I worked for me in 7 days of sof/dac my virus is undetectable & my ALT is the lowest score I have ever had in 24yrs of testing at 11. I intend to do 24 weeks as I have no side affects except the 1stweek very mild & that is what the testing is showing is working for someone like me with F4.
Regards & good luck everyone Angus


Hi Angus, not sure what happened however I can fix this if you wish. Do you want to stick with your current or former login? Em

Okay doesn't seem to be anything wrong with your old login 'sharky00' some people get locked out but your's is okay?? Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Genotype 3's info, updates corner 1 year 5 months ago #5349

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Hi Sharky00,

I agree, doing 24 months of soft/dac too; started 27th October and otherwise okay side effect wise.

For me it is a bit like how mental health doctors struggle with what types of medications to use - all have side effects but some are infinitely worse them others. Do you use a better antipsychotic with a lot of bad side effects with the risk of non compliance, or use a lessor one that someone will stick with??

Seem to remember that Riba stuff back in 2000 (along with interferon) and I did not take much convincing to have 24 months of/dac!!!

yours

J
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 16 May 2016: 4 ref <11
6. AFP 11 June 2016: 4 ref< 11
7. VL 4th July 2016: DET
8. ultrasound 12th July 2016 - OK
9. Oct 2016 - back on treatment
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Genotype 3's info, updates corner 1 year 5 months ago #5353

  • muirmackean
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Thanks to Sharky00, Paul, Sabrecat, GAJ & Vororo for all your input re Ribavirin. Paul, I laughed out loud at your story of putting the Riba in the bin & having to rescue it...
I've slept on it, and this morning I watched this video again, it's a valuable survey of the arguments for & against including Ribavirin in treatment.



He focuses on G3 at 9.20, and there's an interesting bit about Riba resistance at 12.20.

I've decided to stop taking Ribavirin, for the following reasons:
1. horrible sides, bordering on unbearable, both physical & psychological
2. marginal (at best) to zero gains, especially given that I'm not cirrhotic

I can review this when I have my 2 week & 4 week bloods depending on how the viral load is looking.
GAJ, in answer to your question, how did I handle Peg/Riba first time round? Well, I did the 24 weeks, it was no fun, but then (late 2014) there was no alternative available to me, plus I was buoyed along by knowing that I was UND from week 4, so it was working. The sides that I'm experiencing now are very reminiscent of first time round (rage/depression, skincrawl, feeling like s**t), but they weren't consistent first time round, they came & went. The difference now is that I know there IS an alternative (Sof/Dac) which is highly likely to cure me, which makes it that much harder to put up with the Riba.
Good luck to all of you doing treatment.
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Genotype 3's info, updates corner 1 year 5 months ago #5420

Paul,
To be clear I am talking about my experience. I do not for a moment believe I know what it must have been like to go through that hell on wheels they called a "treatment" only to find out you had not cleared. I watched long term business's & marriages Hit the rocks, 2 people with strokes & 1 heart attack. So I sure that must colour peoples decision making this time round, to not take any chances. Saying that Dr Freeman rang my this morning about something else & I used it as an opportunity to raise this ?. His comment is that the use of riba is really a bit of a hangover from the old days. To support this he pointed to an yet released report the largest to date of purely f3, f4's all geno3 that showed not additional effect & if anything the people on riba did slightly worse, but that could be just the error margin.He did say he would be post this report on the site. So I am beginning to wonder.

Regards Angus
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Genotype 3's info, updates corner 1 year 5 months ago #5444

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Hi Angus: Nah that's cool mate, I saw some of that study too and think they might have given the sickest patients the Riba maybe :)

cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Genotype 3's info, updates corner 1 year 5 months ago #5457

fixhepc.com/forum/gt3/369-gt3-high-svr-r...ith-daclatasvir.html

If you look at this post and the pdf you can see that for n=468 F3/F4 patients on Sof/Dac +/- Riba that for everyone who did 24 weeks the - Riba groups out performed the + Riba groups.

Based on this being the biggest trial and best evidence to date I would be going.....

Drugs (ribavirin), just say no.
YMMV
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Genotype 3's info, updates corner 1 year 5 months ago #5458

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Now my head hurts :unsure:
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Genotype 3's info, updates corner 1 year 5 months ago #5543

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Thats it finished with the Riba, no rescuing it this time.
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Genotype 3's info, updates corner 1 year 5 months ago #5544

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Paul-Jarman-facebook wrote:
Thats it finished with the Riba, no rescuing it this time.

I think I'm gonna bin mine aswell, I've only been on it a week and my energy levels have dropped way off, had a liver function test today ALT/AST are in the normal range but my bilirubin has jumped noticeably from 16 to 25, from what I've read it may be anemia that's causing it, I've been out in the sunlight a bit too much the last week, that may be a contributing factor, my last blood test I was below normal for red blood cell count. I've also noticed increased upper right quadrant abdominal discomfort.

I don't want to cause more problems by taking the ribavirin but I also want the best chance of a successful Tx, I wonder, would upping Sof/Dac Tx to 30 weeks Instead give me a higher chance of gaining a 24 wk SVR than a 24 week Tx?
GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*
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Genotype 3's info, updates corner 1 year 5 months ago #6041

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G3a here as well
I was F3 from a pre tx biopsy in 2004
Due to my lifestyle since, I committed to 24 weeks sof/ dac and even contemplated Riba
However all blood tests indicate that I am not cirrhotic - FBC was normal, even good pre tx
For this reason, and other info on this site I decided not to go with the Riba

I did need to make the decision on ordering the next 12 weeks before my Fibroscan in January
As i showed virus undetected at week 4, I am going to wait and see my fibro results before deciding on how long to continue tx
At this stage i am considering 16 weeks rather than 24

It's funny/ odd that I feel I have few, if any symptoms from the hep
But feel no better, actually feel worse, since being virus undetected
I feel quite down and, during exercise get out of breath in a different way than previous
Anyway, I'm keen to do tx for as few weeks as I can get away with
So I may have some weeks of sof/dac hanging around for anyone who wants to 'top up'
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
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