Aa
Stopping Treatment Early Possibly
Throwing this out there for some opinions/theories from others.
There are some really knowledgeable people on this site.
Background:
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.
Geno 1a
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?
In particular-
I know no one is a Dr., BUT- If you were going to stop the INF early how early?
Thanks,
Aaron
There are some really knowledgeable people on this site.
Background:
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.
Geno 1a
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?
In particular-
I know no one is a Dr., BUT- If you were going to stop the INF early how early?
Thanks,
Aaron
Best Answer
Why take the chance if you are tolerating tx, it's a pretty big gamble considering you have already exposed to a PI for 12 wks.
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. .
Wishing everyone the best on their journey.
A
Why does one feel the need to come here and hope to get people to agree with them....... Look if you can't handle it quit! Its that simple.
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.
Your call. Good luck with this decision.
Trish
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.
Your call. Good luck with this decision.
Trish
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)
Good luck
Dee
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)
Good luck
Dee
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.
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.
since you are asking for input :
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 ..
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 ..
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