Ladybug-I was in that trial, no rescue drugs-if Hgb dropped below 10, odds were I'b be taken off the trial. It hit 10 early in, along with the heavy sides. I was laid out flat by week 5!
I also did well with fatty foods, lived on Breyers, almonds, cheese, P-butter. You could have something there!
I don't post often on my reducing, but I do hate to see someone quit versus that option. I have an exceptional Dr., he knew I'd never make it thru tx on full dose's and I was UND week 4. He wanted the drugs in me, even at lower dose's, longer.
Marcia..."So the way to go is to start with the highest dose suitable and stay on it through treatment, if possible. If one has too strong sx, rather reduce than stop".....
Well, yes, but slam it dead as hard as possible to get RVR/EVR. But no one should go into tx thinking "I'll start heavy and reduce", and this is rarely an option for Geno 1's. There is a lot of various issues to decide to reduce- labs, sides, rescue drugs can or can not be used or will work, etc. not just "I don't feel good"
Kimmy...LOL! I'm sure your not that! 1400 is unusual for Geno 2, but as you'd told me your weight, I guess your Dr. decided to go that route and if you can take it, do it. If your UND week 4, maybe he'll discuss that.
3 am.....I'm signing off :)
LL
Have you had any problems with your blood work at that dose? I'm sure you might have posted, but I don't know if I saw it. I was anemic by my two week lab, but not really sick like some others have been.
I was religious about eating a diet high if fat. Some people can't tolerate eating much fat while they treat, but I love fatty foods!
I think it was the secret to my success:)
If I had a dr that recommended redusing dosage, I would have hung on. My dr didn't give me that option.
Happy mothers day all,
Bug
IT SEEMS LIKE IM THE ONLY ONE DOING 1400 MG OF RIBA...THEY SAY ITS WEIGHT BASED.........PROBABLY BECAUSE IM A FAT MONSTER...LMAO
So the way to go is to start with the highest dose suitable and stay on it through treatment, if possible. If one has too strong sx, rather reduce than stop.
That sounds really logical. I really want to get through it and get rid of this virus. Hope I don't have a tricky 3. Time will tell, as with everything else in life.
Thanks,
Marcia
Hi again. As Ladybug has read and I her stopping early, I had to reduce twice in my tx , but was UND week 4. Both my Riba (to 600) and my Peg were reduced. Or I'd have quit early as you did LadyB.! Reduced in week 6 and week 15. I do NOT recommend this to others, only versus quitting entirely.
There are many studies that lean with 800 to even 400 mg Riba for Geno 2's , CS sent me several thru my tx, I still have most. Geno 3's were in some of them. I am one that leans towards 'one size doesn't fit all' in this. (Though not for Geno 1 !!) and feel that slamming the higher dose's is a must until UND, than if one can not tolerate the drugs, not as risky to reduce. I weighed 126 starting tx, was doing the same dose's a 200lb man would do, to me (again, with Geno 2, 3) that seems like a lot of drug for the little bodies! If one can tolerate, do the starting dose's , do that, but if your about to quit or extreme sides, reducing needs to be discussed. I have seen 2 here quit due to the sides, neither tried to reduce first.
There, I finally said it! :)
LL
Thanks. Don't worry, am not stressing... Just trying to find out as much info about tx, before I meet with the hepatologists to discuss my tx and then later my daughter's tx. It's always good to be best informed, before discussing with doctors.
Knowing the importance of dosage and RVR, this is exactly what I'm trying to find out. The best possibility to show UND as early as possible and to have the best chance to clear hep c. I know there is no guarantee, but it would be great to at least be able to create the best foundation possible.
In my case it seems that with Pegasys
All the best,
Marcia
1. I would receive a higher dose of Ribavirin (Copegus) ----- Importance of dosage
2. which would give me a better chance of RVR. ----- Importance of RVR
About the subtype, I just find it annoying not to know, even if it doesn't make a difference. You know, the ever curious brain... :-) I might never find out, but I'll try to get them to test it further. Maybe they'll be able to find it on my daughter.
I'm a geno 2 and I did the Riba 800 which actually was standard tx, but weight based for me also. I did peg-intron, not pegasys. I cleared early, und by week 3. As everyone else points out, the main thing to look for is early clearing of the virus.
I stopped early, something I wouldn't recommend for anyone else, but it woked for me.
We have a genotype 10 from Indonesia and he was supposesd to equal a geno 3. He did 24 weeks of tx and cleared.
I know that the most important factors are dosage and rapid viral response.
BTW, I never found out if I am genotype 2a or 2b, and was told that the tests don't always reveal that info. In fact there are some people that aren't able to tell their genotype at all. Strange, huh? I thought that there were tests for everything, but some things don't respond to testing.
It doesn't matter, it would be treated the same, right?
Good luck, try not to stress...
Bug
Thanks. We must have hit the button at the same time, as I didn't realize you had posted, when I posted my last. Thanks for the info on length of treatment. I will be sure to discuss with the hepas before tx, to hear what they would do in case of not UND week 4 and extending tx. I don't want a situation to come up in the middle of tx. Better to have as many 'ifs' under control before hand.
Marcia
Thank you so much for your responses.
First of all, it could be any of the 3s. I lived in Indonesia for 20 years, from 78 - 98. Am 99.9% sure I contracted it there. Had a tattoo done in 82 in Bali (international place), after graduating from high school. I also received Rhogam shots (made in Europe) 6 times, while I lived in Indonesia. And the many manicures, pedicures, dentists, labs etc in Jakarta. The labs, dentists and salons I went to, were both frequented by Indonesians and foreigners. So, you see, the geography thing doesn't really work.
I am getting a little confused here (nygirl7), as your advice concerning weight based and notseems contradictory. Weight based for me would mean LESS Riba. But you say it would be better to get a higher dose of Ribavirin. According to my weight (56kg), I would not get more than 800mg, if Schering-Plough weight based tx of Pegintron/Rebetol.
Wouldn't it be more favorable for me to do Roche standard tx of Pegasys/Copegus, as I would be getting 1000mg Riba?
Sorry, that I don't really understand the advice.
Marcia
first, gt3 is not bad; you have a very good shot to beat the bug with present SOC protocol; and that is 24w's; if you are not UND by week w4 but you are by w12, you have to do the full w24; there is a shorter tx out there, but pretty much exclusively for gt2's; to be UND by w4 is certainly desirable with gt3, however not the only factor to consider, especially in regard to extending the tx beyond w24; i am presently on w28/w48 with gt3; many GI's think the UND by W4 is nice but overrated; reasoning, that the immune system does not work as linear as we would wish; there are many other factors involved in not relapsing such as sex, ethnicity, age, liverdamage... to name a few; the biggest studies show no significant statistical difference between w24 and w48 of tx for gt3's; what i am trying to say is, don't overestimate the UND w4 number,but also consider factors as your body's tolerance to protocol, your socioeconomic situation and whatever is important to you in making a decision on length of tx; good luck
ciao
If you think you were infected in Indonesia, then i would check that the genotype test can detect G3 subtypes found in Asia. There are a lot. Indonesia also has 3K (formally G10) and maybe a few of the others.
For some reason 3a is rare in Asia.
CS
You will more than likely be 3a. 3b occurs in Asia mainly in Indonesia.
------------------------------
If I remember correctly, you suspect you were infected in Indonesia...this would certainly seem to support that.
Marcia,
The more ribavirin you get (especially during the first 12 weeks) the better. Studies have shown repeatedly that WEIGHT BASED is the way to go. I even asked my doctor to up mine. the only downside is if you go crazy with it like I do it will lead to very big anemia problems...so just make sure you don't double it up that was a big mistake I made LOL.
Treat Geno3 HARD. Don't ever listen to a doctor who talks about "lucky geno's" there are no lucky geno's with this disease if you are the one person who relapses you know? So I always think that is stupid. Treat it harder than anything you've ever done and get rid of it once and for all!
Marcia
You will more than likely be 3a. 3b occurs in Asia mainly in Indonesia.
The other G3 subtypes H, K etc also occur mainly in Asia.
If you are on Pegasys you will be on 1000mg RBV. 800mg if on PegIntron.
In other words 800mg is weight based for you, even with Pegasys kinda.
Not much else to add been said really.
RVR and g3s are dead easy. Not so if you dont though.
All the Best
CS
Thanks for the info. I think they treat with both here in Denmark, weight based and not weight based Riba. The same with the peginterferon.
I weigh 56 kg (56x14=784), so based on my weight, I would get the small doses in both cases.
Should I receive standard dose 800mg or 1000mg with this body weight? What do you think?
My 18 year old daughter, weighs a little less than me. I wonder what they will suggest for her. But I am ahead of the game, as she just was diagnosed yesterday, so I can do all the foot work for her, experiencing it myself first hand and starting tx before her.
Marcia
looks like mar148 got it all said while I was typing.....:)
I was a GT 3A - I don't think there is a 3B, and if there were there's probably no significant difference between 3a and 3b. Not as easy as a 2, but pretty good, all considered, I think.
The key is that RVR at week 4 - get UND and you're in pretty good shape. That's a positive about GT 3 - you get an early and fairly reliable indicator of how you're progressing. About 2/3 (bit more?) will clear by week 4 (RVR), and they have very good chances with 24 weeks. No RVR is a good warning sign that 24 weeks may not be enough.
I think you are in Europe? If so, will you receive weight based ribaviran? In the US protocols have changed from a standard 800 mg for GT 3, to usually 1,000 - 1,200, depending upon body weight. Figure on 13-14 mg per kg of body weight.
I am type 3 and have consistently heard if you are not undetected at week for you and your doctor should strategize about medication levels and duration. If you are clear at 4 weeks (I think I read 67 percent are) you have a high percentage chance of clearing. Also, weight based ribaviron is recommended.