I just left my hepatologists office and she pretty much said the same. With Geno1's even if UND at 4 weeks, she suggests going the full 48 weeks.
She did say she would let us stop at that point if WE decided to, but suggested going as long as possible.
We have just decided to cross that bridge when we get there.
I know personally, as I approach the end of my tx, I sure would like to go on a little longer....crazy me, lol!!
Good luck to you.
So is that true even if treated with the PI's?
No that is not true for the PI's. Not sure about Boceprevir but for Telaprevir it has shown almost the same rate of SVR with 24 wks as 48 wks. Of course providing you are UNDE at 4 weeks or sooner and all the way to 24 weeks.
Now that I think of it I have read studies that even without PI's if you meet certain criteria and are UNDE by 4 weeks you have ALMOST THE SAME CHANCE OF SVR with only 24 wks vs 48 weeks. Only 2 % less of a chance obtaining SVR with 24 tx. Some of the criteria was low starting VL (<400,000), minimal liver damage, etc, etc
"You are all right...I have done more research and everything I have read states even if undetectible at 4 weeks should complete 48 weeks for geno 1a"
Not sure who "all" are, but certainly not me. Anyone UND at week 4, especially with a low pre-treatment viral load and minimal liver damage, should seriously consider the 24 week shorter course. Lots of variables and considerations, but let's not say there's a consensus on this -- either in the medical community or here.
I don't know what PI's are. I just started treatment. Can someone tell me what PI's are?
Sorry, but I put wrong name in comment to Isabella - what are PI's. Thanks
Are Boceprevir and Telaprevir available yet? I still don't know what PI's are. I wasn't tested at 4 weeks only 6. So I don't kno yet. I will be starting my 11the week Wednesday I sure would like to quit or add the new drugs to treatment. My viral load was about 1,000,000 when starting treatment. ALT and AST's in 20's. Everything totally normal. Hope I can stop. I just don't know
Still new at this. Sorry about the "all" comment. I'm not a dr. I hope you are right. I really want to stop at 24 weeks if still undectible unless I can add one of the new drugs.
"PI" is short for Protease Inhibitor. These are the newer drugs in trial such as Telaprevir and Boceprevir. It is doubtful you will be able to add them into your treatment program as they currently are only used in trial settings. As to whether you can stop at week 24 or not, there are many variables and considerations such as pre-tx viral load, week UND, amount of fibrosis, how your're handling side effects, etc, etc. The two best people to help you make such a decision are: (1) a well-versed hepatologist (not a family doc or gastro); and (2) a well-versed you, assuming you want to put the time and effort into doing some independent research including studying data.
Thank you. You give me hope. I am going to attack this aggressively. In fact, I am going to see my doctor soon and even if I have to start over with a new drug added, I will.
Side effect for me so far no big deal. I'm a little itchy, a little tired sometims and dry. That's about it except my hair is a little thinner, but okay. Don't take any other medication except for the pegainterferon and ribavirin. I don't even take ibuprofin (sp?). Exercise about 6 days a week, a total of 10 to 12 hours a week of exercise. It is a little difficult to do the cardio, but it's getting easier. I don't smoke, eat organically, no meat, chicken or pork. Even make my own juice. I believe this plays a large role in my recover.
You have any suggestion on what to data to study? You seem well informed and poisitive.
not sure if you understood jim. the new drugs are in trials only. there are no new drugs to add to peg-interferon & ribavirin at this time. so don't stop your present treatment. i think you said you did a 6 week pcr test, did you get the results? were you still detectable? is this why you want to add another drug? personally i would be looking at a plan that includes pcr's at 12, 16, 24 weeks, if not UNdetectable then stop treatment, regroup and wait for the new drugs coming out in a few years. Best of luck
I was undetectible at 6 weeks, with ALT and AST's in the 20's. I live in Taiwan and wasn't familar a treatment plan. I very well may have been undetectible at 4 weeks but not tested.
I want to stop this treatment and add one of the new drugs. I know I would have to start all over again but the odds are not that good now. I know PI's are still on a trial basis but from what I've read sounds so bad for 1a's. What if I am detectible after finishing treatment - what a waste.
I am going to see if there are any trials in Taiwan and I will definitely go for it.
I see your point but what if you do get cured with the drugs you are taking now? being undetectable at 6 weeks gives you a very good chance. Then if you relapse you could wait for the new PI's.
As for the trials most are for those that have never treated before, obviously you have. There a few trials for relapsers & non-responders but this is not you either because you are responding.
So I dont see any other choice for you but to continue with the present drugs and get viral load tests every 4 weeks. If you are going to stop no matter what your doctors or us say at least try and hang in there to 24 weeks then quit.
There is one drug you could add to your present combo called Aliana. There have been some great results reported when adding it to interferon & ribavirin. It is approved for other things but was found to help with HCV. You could ask you doc to prescribe "off label".
When I spoke to my hepa about this....it was in the context SOC only. The conversation with my hepa was regarding my daughters tx =(.
Sorry for the confusion....I was on a PI and am (somewhat) hoping for 24 weeks.
Thanks. I was thinking the exact same thing. I will continue treatment for six months and stop if undetectible or detectible. If detectible, see if I'm elibible to start a new trial medicaion treatment. I think Scherring has trials for relapsers but may not yet be available. Thanks for the good advice. I am going to check with my dr. about Aliana.
You have time to rethink a decision to stop in six months if undetected. By that time, you will be more than half way done and being undetected since week six is a pretty good advantage. If you were to stop at that time and somehow get into a PI trial you'd still have 6 more months of peg, riba and something else ahead of you after prpbably marking time for 6 motnths or so in between. You might consider leaving the dance with who brung you..
"Copy" is correct, you may have misunderstood what I said. I do not recommend stopping treatment and then re-starting with a PI.
If you were UND at week 6, stopping treatment most probably doesn't make any sense at all, unless you've had a change of mind whether or not you should treat or not.
Keep in mind the new drugs will still require you to treat for 24 weeks with the addition of an additional drug.
As it is now, the prudent thing would be to treat for 48 weeks, but gi en the fact you were UND at week 6 (and not tested at 4) you could conceivably gamble that you were UND at 4 and therefore only do 24 weeks this time although your viral load is not considered low. Again, this would be a bit of a gamble because the requirements for the shorter course are UND at week 4 and a low (under 600,000) pre-tx viral load.
Personally, in your place, I would not consider 24 weeks unless you had very little liver disease and/or bad side efffects from the tx drugs. Do you know what stage liver damage you have from your biopsy? If it's stage 3 or 4 don't even consider the shorter course and even if stage 1 or 2, make sure you consult with a good hepatologist before making any decisions. And again, the decision to stop now and then re-treat with a PI doesn't make a lot of sense at this point.
You gave me a good laugh "leaving the dance with who brung you". I know what you mean, but I'm 1a and rather wait for the better medication if what I'm doing now doesn't work. I honestly don't know what's best - 24 wks, 48 wks. So much to absorb and I'm am a beginner. I still want to do more statistical reseach and medical reseach. Right now mentally exhausted. I have such a headache just thinking about all the info I've processed in the last few days. Thanks for making me smile. You very well may be right. Like I said - just don't know.
Never had a biopsy. Never tested at four weeks. I know it's standard in the U.S. but I'm getting treated in Taiwan. The 1st doctor I went to said it wasn't necessary that I needed to start treatment right away. I didn't know as much then as I do know. Needlesstosay, I changed doctors. That's how I missed my 4th week viral blood test. I will have a biopsy at the end of 24 weeks. According to those results, I will decide what to do.
Every day I learn something new. This forum has been a great source of information and I have checking everything I possibly can.
Of course, if I stay non-detectible, I will not go on a trial treatment program or new medicaion.
You have to understand that being UND at week 24 does not mean you are cured (SVR). You will have to wait at least 12 weeks after you stop the treatment drugs to be pretty positive although you will get a good indication at 4 weeks after stopping treatment. Given your pre-tx viral load, no week 4 test, no biopsy and age -- I think the prudent thing is to treat for 48 weeks. As to the biopsy at week 24, are you thinking about having it while on the treatment drugs? This is unusual and you just can't go on and off the drugs without lessening your chance of SVR. My suggestion is to learn some more before making decisions and try and hook up with a good liver specialist. Self treatment without knowledge will get you into trouble.
I believe your best chance at SVR is to treat for 48 weeks. Particularly due to your geno type, suspect UND date, and pre tx viral load. As it stands with your early response you have a reasonable chance at SVR. You don't want to risk having to go through this again, so 48 weeks is your best shot. Good luck with your journey. Regards Emi
I'm not making any decisions without more research. Like I said, it's different in Taiwan for me because I do not speak Chinese. I am not an idiot and will not have a biopsy or change treatement without thorough research and talking to a specialist. Also will not stop treatment if I continue to be undetectible. Before I didnt know you couldn't jsut add the protease to existing treatment and I know it's on a trial basis.and I know you have to wait.
I am new at this and iin a foreign country. How long have you been dealing with treatment? You sound like you have done this for some time. Have you relapsed or not responded?
Dar: I will have a biopsy at the end of 24 weeks. According to those results, I will decide what to do.
No one is saying you're an "idiot", but when you make declarative statements -- like above -- people here will try and help clear up any misunderstandings you understandably may have since so you're relatively new to treatment. For example, the difference between being UND during treatment and being SVR (cured) which is when you are UND three months (officially six months) after you stop treatment.
As to your question, I treated once around three years ago and the treatment was successful. I therefore have been SVR (cured) a little over two years now.