According to the studies I've read, if you don't RVR your chance of SVR goes down from 90% to 50%. Extending brings your chances back up. I don't know how much, but obviously enough that the experts are recommending it.
In my case I did achieve SVR, but I could have been in the 50% who would have made it anyway, who knows.
The fat with riba thing is more than a theory. There is data to back it up and, as Bill1954 pointed out in a previous thread, Schering Plough now includes it in their package information with ribavirin - and put it at higher than the 46% increase in absorption factor that the study I'd posted put it at - something in the 50's %. I'll have to find the thread and bookmark it for future reference. Suffice it to say it's not a theory to me, it's now fact.
I took study drug for 4 weeks in tandem with 180mcg Interferon and 1200 Riba daily. As I had treated previously I knew the difference between the effects of the SOC and the new drug. There were definitely a couple of effects but neither of them were unpleasant. I would always have a bit of a body heat rise and facial flushing about 20 minutes after dosing and I found that I always felt 'full" even though I was hungry. It was very odd!
My HB dropped quite severely just before the end of week four and I don't know if that was due to the extra riba or R7128 or perhaps a combo of both. The drop in HB is a good sign though as it shows the body absorbing plenty of Riba. I was definitely under dosed at 800mgs daily on my first tx. When I started tx I weighed 65 kilos and then gained weight, despite most people losing weight! By the time I finished I was about 73 kilos and still on 800. My Hb was barely affected.
I would strongly urge you push to get more Riba than less. And it really is worth saying something to your nurse or doc. I know you may think they won't change but it is my experience that if you keep mentioning something and you back up your statements with statistics from recent trials, the med team can actually be swayed... You have nothing to lose!
The other thing you can do is make sure you are getting maximum riba absorption by having some extra fat with your riba meals. Also avoid grapefruit, tea, and lots of fibre, and don't take maalox or other antacids 2 hours either side of your meds..
Some people disagree with extra fat theory but I did it, and many others here and they have all SVR'd. I did every thing incorrectly on my first tx simply because I didn't know what to do!
Also, you need to keep the fluid intake up as the meds are very dehydrating but don't go too overboard, you don't want to flush all the meds out too soon!! Actually, myself and several others here had problems with all the water. After a while you start to feel bloated and waterlogged!
All the best with your treatment, please keep us posted!!
Epi :)
you wont get an extension in uk for first tx, unless you have chirrosis , end off.....
you will have to tx first , its frustrating but thats the way it is
Well, I weigh over 65kg,so I guess I will be getting more than 800 mg.
I don't think anybody extends for G3 here. Do you know what the impact on the SVR rates are for extending?
As a geno 3 you would have to already consider extending, if not RVR. The cut off time for extending is 12weeks in geno 1, but not for geno 3. As a geno 3, if you would only clear by 12 weeks, you would have to do 48 weeks.
I wish I still had all my research I did before and while treating, but my computer crashed post tx and I lost all my stuff. I think I printed out some of the things and will look in my hepc folder. Then I can give you some info you might not know already.
It is REALLY important that you get the right amount of Ribavirin. In Denmark they also go after what it says on the package., below 65kg one gets 800 mg. I wanted to have 1000mg, because g3 is harder to treat, but they didn't let me. (I weighed 57kg when I started tx) I'm pretty sure that I would have had RVR if they had let me.
I think it is great that you are trying to research as much as you can before tx. Especially about your own genotype. I remember getting frustrated at times, because a lot of info was jammed together with geno 2. And there has not been that much focus on geno 3. After digging a whole lot and researching around 8 hours a day for months after months, I was able to find some things, which I believe helped me achieve SVR.
I came up with a treatment plan which was okayed by Dr. Dieterich, when we could still consult him on MedHelp.
Wow! That is great news! That does sound promising.
I am happy to do the SOC treatment. I just like to know that there is something out there "just in case." It helps me feel better, I guess, about this whole thing. I'm going to check out the link you've provided.
What was the treatment like? How long were you on? What sides? Tell me more about it, as I am very curious.
Jessie, I don't think it matters why I am interested in this subject. I am asking if anybody has heard of any new treatments that have shown promise for genotype 3. I want to know because I am curious. Different genotypes respond differently to treatment. I am starting treatment in January, regardless of the answer.
Second, I know that RVR is four weeks. I said And/Or is still detectable at 12 weeks. That is to say, I could see arguing for longer treatment if I were to take longer than 4 weeks to clear and/or was still detectable at 12 weeks.
Third: yes, my treatment will be discontinued if I do not achieve a 2-log drop by 12 weeks. I have had this confirmed by my consultant and my clinic nurse. The odds of that happening are very slim, so it's not really worth arguing over, but I do know what I am talking about. Not all NHS trusts are in lockstep on these things.
I echo Epi's comments. the only correction would make to her comment is that geno 3 non-responders had a 90% success rate. It is very promising. We were both in the phase I trial. It is now recriuting for a phase II. you may want to look into it. Keep in mind that these are trials and they are not for everyone. Not to mention there is a 20% chance that you could get the placebo (although you still get the peg and Riba). I hope this helps.
Look for trials with a new drug called R7128 (Roche)
I was a Geno 3a null-responder to 24 weeks of SOC treatment (the standard dosing regime which will no doubt be what you are talking about, ie 180mcg interferon weekly and 800mgs Riba daily).
I took part in the Phase 1 trial of the above drug and was UND within 4 weeks (RVR) and continued with Peg and Riba for another 44 weeks. This time I had tailored dosage and my Riba was at 1200 daily. Between the new drug, the extra riba and the longer treatment I was able to achieve SVR. YOu can also checkout Dragonslayer's profile as he was on the same trial as me, but in a different country.
Teleprevir and Boceprevir are not proving succesful for Geno 3 patients. However R7128 is bringing in results of 85% RVR across all Genos. After RVR is up to SOC and your immune system.
If you are not able to tailor treatment then I would strongly suggest a trial. Here is a website you can look on: http://www.clinicaltrials.gov/ct2/home
firstly
you seem obsessed with comparing your genotype and others , why, maybe you are not mentaly prepared for tx yet.
rvr is 4 wks not 12
if you in uk then your tx wont be stopped at 12 wks if a 2log drop is not achieved
My SOC is the SOC for the UK. The dosages are the same for everybody unless it's somebody who is extremely obese. I forget what my doses will be, but I do know they're what everybody with G3 gets. I will go 24 weeks, unless I fail to achieve a 2-log drop by 12 weeks. If that happens, tx will be discontinued. I think I could try to argue for longer if I'm someone who doesn't have a RVR and/or is still detectable at 12 weeks. I don't know if I'd get it, though.
That's what happened to me too. No choice really. I live in Denmark. But I was so insisting with my at and came up with a plan after I didn't go undetected on my week 4 PCR. I came with studies and when one of the doctors came back from the Liver Meeting in the US last year, they agreed to prolong my treatment. The doctors are now agreeing that treatment should be individualized.
Anyway, can you find out what the SOC (standard of care) is at your hospital.
How much Ribavirin do they plan on giving you. Is it weight based? When you have all these answers, it will be easier to see what you will be facing.
I don't have any choice about dose or duration. So, I'm not going to think about that.
I was just wondering if there were any promising things in development that I can sort of keep in the back of my mind for bleak days when I'm worried about how I'll do on SOC.
Yes geno 3 seems to be an easy one or a very hard one. So sometimes it's like a 2 sometimes it's like a 1 - something you can't really know until you've treated. I'd advise you to treat as long and hard as you can the first time so you don't have to do it again and as Marcia said DEFINITELY at least weight based riba. That is crucial.
In the category of "if I knew then what I know now" I probably wold have taken a different approach. Even if TVR was proven effective for G3 it might have been 24 weeks anyway, so the gain might not have been as profound as it might be for G1.
My feeling is that treatment for G3 needs to be less "scripted" and more personalized. Taking into account all factors (like age, BMI, diabetes/insulin resistence, liver condition etc) I think some smart docs could come up with variable (dose, duration, intervention, testing) processes that could be more effective and designed with the individual in mind. To me, relapsing (especially for G2 and G3) is one of the world's monumental wastes. Problem is that most doc go by the book and just shrug when it doesn't work.
There are no other treatments for g3's at the moment, so we gotta do with what there is.
Treating with SOC is not that bad. I was a g3. The important thing is to be on weight based Ribavirin and to have a 4 week PCR. If you are undetected by that time, you have a 90% chance of being cured with 24 weeks of treatment. That are great odds. I wasn't quite so, but almost. So I extended treatment to 32 weeks. (formula used UND by week 8 + 24=32)
I am now cured.