Throwing this out there for some opinions/theories from others.
There are some really knowledgeable people on this site.
I was on Incivek for 12 weeks and missed one single dose only.
I have been on SOC (including the 12 weeks w/incivek) for a full 18 weeks now and
have maintained full adherence to dosing of SOC.
Started TX w/ VL >20,000,000 and AST/ALT 150/350 range for last 5 yrs or so
within 10 days (first PCR) my VL dropped to 40 and close to normalized LFT.
4 week and 12 weeks PCR was UND.
LFT have stayed normal after 3 weeks
Stopping Early Rebuttals:
I know it is not recommended because the only time frame tested in trials was 24 weeks-
I know that I 'SHOULD" just do the 24 weeks just to make sure.
I know many had to do 48 or 72+ weeks (I feel your pain).
And yes, maybe I am just being a baby wanting to stop early.
MY theory (not fact) :
The virus is gone. Has been gone for a while now.
INF/RIBA have done for my body all it can in relation to the Hep C Virus.
I am continuing taking it because that's the only data published.
My Drs. input:
He cannot recommend stopping early because the data only supports 24 week TX time.
He also said if I were to stop anything early, stop the INF and to continue with the RIBA.
He also said if I stopped the INF a couple weeks early, it probably wouldn't have much of an impact on SVR-
BUT- he cannot recommend doing so, nor can he recommend how early would be "probably ok"
My POSSIBLE plan:
Continue with RIBA full 24 weeks, but stop INF at week 20 or 22
I feel like the INF in particular is not beneficial to me at this point.
I am not for sure going to stop, I am a very cautious person (mostly).
And I would hate to retreat- but given the new trials without INF at all, and
if I continue the RIBA I don't think stopping the INF early is going to have much of an effect on SVR.
Anyone care to offer discussion?
I know no one is a Dr., BUT- If you were going to stop the INF early how early?
To help us understand why you want to stop the interferon and not the ribavirin, can you explain your rationale? Are you experiencing side effects from interferon that you can no longer tolerate or you cbc's having major problems?
You say you "feel the pain" of those of us who have treated for an extended period of time. Have you felt the pain of relapsing? I wouldn't wish it on anybody. I can't imagine taking a chance like that unless ordered to quit by my dr. because of a life threatening side effect.
You are very fortunate to be only doing 24 weeks of treatment. You only have 6 more weeks to go. Pull up the boot straps and finish correctly. You will have then followed your docs orders and if you relapse you will know in your heart you have done everything you were suppose to. After all you have already committed to, no real good reason to quit other than being uncomfortable you are taking a huge chance. No one can say what will happen. Dont mess around with this. How can you tell if the interferon is doing you any good at this point? You wouldnt be able to treat again for a while and 6 weeks is a lot shorter than another 24 or 16 or even 12 week treatment if the researchers get that far anytime soon. Please hang in there. Just quit analyzing it and take you meds and your shots and before you know it you will have COMPLETED treatment successfully!! Best wishes for you and a complete golden SVR!
As I see it the trouble with stopping now is you dont know the virus is gone. The vl test in not 100% reliable, and neither is tx. You have gone through the worst of it and have good numbers on your side. I hate this crap too, but I signed up for 24wks and I will not quit before then. I feel like I owe that much to the people in my life that care about me. One thing is for sure, there will be an outcome from your tx, and if you elect to stop early and relapse, you will ware out your shoes kicking your own butt.
First your doctor Did Not Recommend stopping early .. He said if You decided to .. your decision , not a good one in his professional decision .. if so continue the Riba ..
You "Feel" the Ifn is not needed anymore .. don't quite know what to say to this ... All the data we have is derived from science , the guidelines were set up by the scientists and doctors who researched and documented the results these drugs in a controlled manner ... Not by their "feelings" ...
"Missing a dose or two of INF during the course of TX is OK in most cases, so I figure why not at the end? " - if you are referring to the 80/80/80
so called "rule" .. that is not recommended, but, in some cases needed .... what is recommended is 100% Tx compliance ...
Your a grown adult - make an informed choice and take responsibility for that choice .. if you quite early and relapse .. your "feeling's" will have been wrong .. Tx round 2 ...
If you quite early and SVR .. rejoice, life is good ...
BTW, I'm at wk 56 of 60 weeks in my Tx regime .. started before PI's were released .. I feel pretty good overall (knock wood) .. everyone is different ... just talked to my ex boss who did 2 rounds P/R in the late 90's .. worked through both Tx's - SVR'd and he is in great health for his age 62 ..
Not sure why you do NOT consider HepC a deadly poison.
Riba is a booster to Interferon not the other way around. It's kinda pointless to take Riba more than a week after the last Interferon injection.
Missing a dose or two of INF is ok in "most" cases? Even if true wouldn't you hate to be the case where it wasn't? I was told a similar thing when taken off tx for a couple weeks ... 3x's ... I didn't believe 'em then and, related or not, I relapsed.
Speaking of which, to relapse one had to be UND first. Meaning it's not a justification for stopping early when even if you go the full length you may relapse anyway.
You need to get over the 'my body is a temple' thang. The Hep C Virus are the rats overrunning the temple and the rats are bigger than the cats. It's time for rat poison. At stage 3/4 you ought to be feeling the need to finish.
From your Dr. input section it sounds like you are bullying the doc., or at the least presenting him with a done deal and he's grudgingly giving you an answer. He's recommending against stopping but you only hear, I can stop the INF early. Early goes from 2 wks to possibly 4 wks based on a "feeling" you have. Hey, why not stop now? After all you are UND.
IDK but for being cautious guy it seems like a rather caviler attitude you're taking. I hope, we all hope, you make it whatever you decide. All the Best.
Hello, I know this tx is hard but it is working, I am on week 14 of 24 weeks (I think, losing track) and I was UND at 4-12 weeks, next test at 16 weeks.
I did a triple tx in 2008 was UND by week 8 which is nothing now but was great then, did the tx, was UND, then 6 weeks after stopping I relapsed. You can not imagine the pain of relapsing after a triple tx. It was a very promising trial and I know that Trish77 svr'd (so happy for you Trish) why would you want to take a chance and then have to do this all over again? You can read my posts if you like for almost 10 days I haave been going crazy, no sleep, no appetite but I am continuing on because as Hector says, Hep C is benign compared to ESLD or cancer (shout out to Hector, he is a great person)
I'm assuming your doctor says continue with the Riba because your own plan is to discontinue the INF against his advice so he wants you to at least do the riba.
I concur with some of Aaron's comments - it's not "okay" to miss a dose of INF here and there. Full adherence is the goal to be shooting for always.
I'm not sure why you "feel" the INF is not doing it's job anymore, as if the drugs you're taking now are just extra. The reason people relapse after being UND for awhile is because there are low-lying virus that were not detectable but still there. We keep taking the INF/Riba for the length of time we do because it deals with those virons. It's like being on antibiotics that are prescribed for 10 days. Even though you feel better, you take the full 10 days because scientifically, it's been determined that's how long it takes to deal with all the bugs that are still there and can make you become sick again.
INF and Riba are most effective when taken together. IT's as simple as that.
The science so far has the best result scenario for shortened duration treatment based on particular critieria.You are a Geno 1a. The best case scenario of stopping early is not in your favour with your stats- and there is a difference between Geno 1a and Geno 1b - the best chance to clear the virus when stopping early is to start with a low viral load of <20,000 and low fibrosis, among other factors - that's twenty thousand, in case you thought I left out a zero or two or three. You're starting with 20 MILLION. These aren't numbers they pulled out of a hat. Shortened duration treatment has been studied intensively.
The biggest reason you don't want to stop treatment early is that you are taking a PI now. PI's have resistance issues and if you relapse, you will have developed virons that are resistant to the Incivek you took and also to any other PI drug in the same class. The only PI's approved for market are Incivek and Victrelis. And the fact is, Incivek and Victrelis are the same PI class. So you will be resistant to both of the PI's available if you relapse. BECAUSE of the PI's, it has become *particularly critical* to adhere to treatment and to be SURE that you clear the virus first time out if at all possible. If you relapse, while current studies show that Incivek resistant virons will mutate out of their resistant form after two years, this is all so new that it's a helluva chance to take. The KEY is to not be left with resistant virons at all. You're taking a helluva chance in stopping early in that regard.
The only reason I can see for stopping treatment early is that your side effects are threatening to cause some kind of damage that would be permanent or debilitating that would make the continuation of treatment a bigger threat than discontinuing. I don't find anything sound in your other reasons for discontinuing, to be perfectly frank and honest about it.
If you're fed up with treatment and hate putting that needle of interferon into your body each week, I'd say that's a pretty normal "side effect" of treatment. Nobody likes this stuff and it seems everybody hits a point where they're fed up and not sure they can go the duration. However...in YOUR case, you've got the golden ticket of a 4 week UND/RVR, which makes your chance of cure as a Geno 1a incredibly high. You've already done 18 weeks. You've only got 6 weeks to go and you've nearly bagged this. You're taking a huge risk to stop now, unsupported by any science of any kind, risking a relapse AND resistant virus, whereas another 6 weeks and you've got an excellent chance of never having to do this again.
I think the masses have spoken regarding what I SHOULD do. thank you.
I hear the uniform chime.
I know I should finish, just to be cautious.
Also, I was not considering stopping right now,
I was only considering stopping the INF 2 weeks early.
Yes, I said 2 weeks maybe even 4 trying to be greedy, but really, I would have only stopped THE INF one or two weeks early if at all.
I have heard everyone's mostly heartfelt pleas to continue the full course course. A couple of stabs thrown in for good measure, I get it- human nature.
I am not interested in debating opinions at this point and feel (my damn feeling again) I am a rational person honestly trying to do what's best for me and my "temple" I am not being cavalier, I am listening to what I believe is right for me. I was not bullying my doctor I simply asked I could stop early. Once.
I am now considering staying the full course but reducing my 23rd week injection to 135mcg and my 24th to 90. There is data From the INC Trials saying dose reduction has less than 1% to no effect on SVR.
I will let you know how everything goes. Thanks everyone for their input.
I will feel better not stopping, but reducing.
Btw, part of my reason is I have a trip planned 11 days after my scheduled end of my treatment and would like to feel a little better.
I can hear the "what's more important feeling better or getting rid of the virus" no need to say it.
I am grateful for the opportunity to have taken the treatment thus far. .
If you fail the triple or need to stop early and eventually fail, it is possible to do the new all oral regimen. In fact they are recruiting for people who have failed the triple in early 2012 in the Pharmasset trials.
I am not interested in debating opinions at this point and feel (my damn feeling again) "
hey if you quit early and relapse then it's on you, why are you even bothering to ask? Seriously I don't get it? 24 weeks is a breeze do you know how long some people in here have treated to get rid of this virus and then relapsed anyway?
Postpone your trip even if you stop 2 weeks early for some dumb reason (to go on a trip and 'feel good') is that worth it if you relapse? The odds are NOT 100% with these meds why take thata chance!!!!!!!!!!
When I first came on the forum years ago and was considering tx a year was my only option. When triple came out, I jumped on it. I feel so grateful to only have to do 24 when some on here have done two, three tx.s in a row. Yes, I understand wanting to stop early. I was UND at 4,8 and hopefully 12 next week and my friends say can you stop now?? My drug induced brain tells me maybe but my doctors say no. Please hang in there, we will happy dance together then you can go live life....
You have already decided to do the INF for 20 or 22 weeks, by that point you are already 83-91% complete with the treatment...to me, it kind of seems like running a marathon and stopping at 25 miles, cause you know your going to be sore from running so far, you were probably going to be sore after the first mile or 2...it's only 2 or 4 more weeks...if you can do the 20-22 weeks, why not finish? The INF is in your body already, do you have any data that says 22 weeks of INF poison is less damaging to your body than 24 weeks? There is data that says 24 weeks of INF has a good chance of SVR.
It must be so hard, and granted i haven't started treatment yet, but it sounds like you are basing this on an emotional decision rather than a logical one...it seems like it would suck a lot more to have to do the whole thing all over again cause you didn't want to wait 2 weeks.
It does seem kind of ridiculous that you might then have to go through another treatment regimen for months and months. Even if it is more benign in terms of sides, it is still a pain in a.. If you fail your treatment you will be kicking yourself that maybe the reason was because you left two weeks early. On the other hand, if you fail and you went the full course you will be able to tell yourself "I did the best I could".
+1 Candyman with this 'new' treatment it seems that people can just make up whatever protocols they feel like - darn dont you wish we could have treated that way! But nah we were too busy with our 50% odds trying to get to SVR maybe if we had a 75% chance at success we would have figured it was worth the risk to just make up stuff helter skelter.
I guess nobody remembers the other 25%, sadly they probably will be totally compliant.
We all go through periods of questioning and indecision during trt. Its good to hear input from this knowledgable base to point you to the right path. You asked for opinions and got some great input. Everyone wants to see you succeed to SVR. Best of luck to you.
Frijole: "grade 4 of inflammation and stage 3 of fibrosis according to your profile. "
Wow...I didn't check your profile when I posted my opinion. I have to be honest....with your stats, I can't imagine why you would dose reduce and take any risk of any kind with your treatment and give anything less than maximum effort (nod to HCVJames). You're really taking a risk here. If treatment fails, you have at LEAST two years until you can re-treat with another PI. Curiouslady's suggestion that you can do a trial is fraught with all sorts of variables that don't make that anything close to a surety.
f anything, I'd be concerned about doing short course treatment of 24 weeks. That would be the MINIMUM protocol. In fact, the more advanced your fibrosis, the less likely that short course duration of treatment is successful. You have the markers that indicate a lower degree of success for short duration treatment - you're Genotype 1a, your viral load was very high and your fibrosis is very advanced. I'm more than a bit stunned that you'd consider dose reducing with your stats.
I'm sorry that I can't candy coat that for you and tell you that it's okay for you to put how you feel on your trip ahead of achieving a successful outcome on your treatment.
As for what the stats say that reducing interferon doesn't affect SVR, you need to be careful of what the variables to that are. I wouldn't be taking any unnecessary chances at all without a very good reason for doing so.
You're entitled to make your own choice for sure but you'll be hard put to get support for that choice taking into account your circumstances in their entirety.
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