Aa
HR, extremely disturbed about this "tapering" off INF theory recently posted
I just read the post about tapering off interferon in order to allow for ones own immune system to re-adjust in order to suppress any remainding viral particles. I firmly believe that is why I didn't have an SVR after 72 weeks of trteatment, as well as the two previous times treating. The reason I feel this way is due to fact that when I finally stopped after 72+ weeks I could actually feel my own immune system "coming back online". Within the first few days I had frequent bouts of fever and sweating. It is also interesting to note that within that first week off the drugs I was experiencing alot of personal stress with loved ones and I now theorize this stress hindered my innate immune system from "mopping up" any latent viral particles. I 'm feeling angry and disgusted with the incompetence of most doctors for not recognizing this simple principle of immune system re-adjustment and viral re-bound.
ala: Well certainly though I am not going to be less successful by treating LONGER than acutes did in the studies.
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No, you will not be "less successful" if the measurement of "success" is only SVR.
However, if the measurement of success is what is best for your general health -- especially in light of all your other medical issues then "yes" you may become less successful if you treat beyond what has been shown to give you excellent odds. And that's because the treatment drugs themselves are not without risks, some of which can be permanent. (BTW this comment is separate from my comments on "tapering" because I'm not convinced that tapering helps (or hurts) SVR. Really don't have a clue here).
Some related comments in this thread here as well as in the thread MerryBe just started: http://www.medhelp.org/posts/show/376543
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No, you will not be "less successful" if the measurement of "success" is only SVR.
However, if the measurement of success is what is best for your general health -- especially in light of all your other medical issues then "yes" you may become less successful if you treat beyond what has been shown to give you excellent odds. And that's because the treatment drugs themselves are not without risks, some of which can be permanent. (BTW this comment is separate from my comments on "tapering" because I'm not convinced that tapering helps (or hurts) SVR. Really don't have a clue here).
Some related comments in this thread here as well as in the thread MerryBe just started: http://www.medhelp.org/posts/show/376543
Remember, acute's have close to a 90-95% chance of SVR, so don't try and monkey around too much with whatever formula produces those numbers.
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Well certainly though I am not going to be less successful by treating LONGER than acutes did in the studies. Or by using more ribavirin. If I am able to stick out a standard course, or a standard course for nine months and use the last three of the twelve to titrate my doses down over the last three, I think I will be safer.
I do have some issues which may make my body work differently than other acutes, so that's a little frightening to me too and I want to be damn sure that this is the only time I ever have to do this. If going the year now saves me from doing this again, I want to do it. Reality is reality though, so yeah - gotta get the consult in and come up, I think, with several different scenarios dependent upon what happens in my tx in the days and months to come. Because its gotten a little dicey lately. The hematology oncology center I go to though, those guys are fabulous. They really want me to do this now. They told me this week they will support me blood count wise and they will help me chelate the iron after tx. And I will never miss even one shot of epogen again.
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Well certainly though I am not going to be less successful by treating LONGER than acutes did in the studies. Or by using more ribavirin. If I am able to stick out a standard course, or a standard course for nine months and use the last three of the twelve to titrate my doses down over the last three, I think I will be safer.
I do have some issues which may make my body work differently than other acutes, so that's a little frightening to me too and I want to be damn sure that this is the only time I ever have to do this. If going the year now saves me from doing this again, I want to do it. Reality is reality though, so yeah - gotta get the consult in and come up, I think, with several different scenarios dependent upon what happens in my tx in the days and months to come. Because its gotten a little dicey lately. The hematology oncology center I go to though, those guys are fabulous. They really want me to do this now. They told me this week they will support me blood count wise and they will help me chelate the iron after tx. And I will never miss even one shot of epogen again.
Guess what I was trying to say in the last paragraph is that if the odds are heavily in your favor, go with what is proven, and not what isn't. To the best of my knowledge, no studies on tapering whatsoever, and while on paper it all makes a lot of sense -- still so much unknown about the immune system and how it works. The immune "hand off" post treatment -- if indeed that has anything to do with SVR (some think "yes", some think "no") is still not understood.
I also thought about tapering at the end of treatment, but in the end calculated my odds of SVR around 80-85% based on my RVR, full compliance, and UND status throughout treatment. I was happy with the odds and therefore didn't want to chance anything let's call it "experimental". On the other hand, had I been a slower responder, and had my odds not been so good, I might have tried tapering -- or who knows what else -- just to add something different to the mix.
Again, in your case as an acute, your odds are I believe around 90-95% (you'll have to chedk the articles) for success. If it were me, I'd try and follow as closely as possible whatever treatment regimens achieve those odds -- as opposed to trying to outhink something that so far has not been out-thunk very well -- that is the HCV virus.
-- Jim
I also thought about tapering at the end of treatment, but in the end calculated my odds of SVR around 80-85% based on my RVR, full compliance, and UND status throughout treatment. I was happy with the odds and therefore didn't want to chance anything let's call it "experimental". On the other hand, had I been a slower responder, and had my odds not been so good, I might have tried tapering -- or who knows what else -- just to add something different to the mix.
Again, in your case as an acute, your odds are I believe around 90-95% (you'll have to chedk the articles) for success. If it were me, I'd try and follow as closely as possible whatever treatment regimens achieve those odds -- as opposed to trying to outhink something that so far has not been out-thunk very well -- that is the HCV virus.
-- Jim
No, my comments were not directed to Deb at all. They were in the context of a general discussion of "tapering" for those treating for chronic HCV. My only comment to Deb was that her doctor wasn't "tapering" but rather simply reducing the dose. At leas that is how I understood it. The two are not necessarily the same.
As to you, I didn't realize you were even contemplating treating 48 weeks as an acute as usual treatment I believe is 24 weeks, and often without ribavirin. Peg being the important component.
Deb's case was different in a number of ways, including some uncertainty of her acute status and something else -- fatty liver??? -- that's just a guess.
What you have to do, at some point, is to spend some time with those studies and then go see a hepatologist to help put it all together for you. Stuff like "tapering" is interesting, but it's a bit like putting the cart before the horse at this point IMO.
Remember, acute's have close to a 90-95% chance of SVR, so don't try and monkey around too much with whatever formula produces those numbers.
-- Jim
As to you, I didn't realize you were even contemplating treating 48 weeks as an acute as usual treatment I believe is 24 weeks, and often without ribavirin. Peg being the important component.
Deb's case was different in a number of ways, including some uncertainty of her acute status and something else -- fatty liver??? -- that's just a guess.
What you have to do, at some point, is to spend some time with those studies and then go see a hepatologist to help put it all together for you. Stuff like "tapering" is interesting, but it's a bit like putting the cart before the horse at this point IMO.
Remember, acute's have close to a 90-95% chance of SVR, so don't try and monkey around too much with whatever formula produces those numbers.
-- Jim
LOL you flatter me. You're lucky you didn't see me this week, nobody was drawing anything - trust me.
Under Deb's post you had said something about cutting tx short, and I just wanted to clarify that you didn't think she was cutting hers short given her acute status.
Because I am thinking about possibly doing much the same, although maybe the riba and the peg at the same time, don't know, but perhaps after month nine beginning to taper off both if my doc doesn't think I can get insurance to let me taper off after 48 weeks. I'd already been thinking, oddly enough, about these issues in the hospital.
It was all due to my IV. I use phenergan every time I'm hospitalized. It's pretty caustic on the skin. But I hold up ok with it. We are talking a BUNCH of surgeries. So, this time I noticed that my arm is having HUGE reactions to the phenergan. There are huge red streaks all the way up each blood vessel every time its administered (I have horrible veins, this is the only time I have ever even SEEN the veins in my arms except at the elbows and wrists). These lines became raised and puffy and large. Both arms became covered and entirely swollen. They almost had to use my neck they'd put in so many IV's. And I was like, what the hell?
Then I realized... oh. The interferon. It is causing my body to react against this caustic substance. Then I thought, I wonder how my body is going to react to the sudden cessation of interferon, particularly with my interesting auto-immmune mix of stuff anyway. And I thought, wouldn't it be better if I eased my body out of this at the end so my own immunity can come back online? I mean my body already doesn't make blood well. Maybe I ought to ease off of this stuff at the end, give it time to adjust...
Under Deb's post you had said something about cutting tx short, and I just wanted to clarify that you didn't think she was cutting hers short given her acute status.
Because I am thinking about possibly doing much the same, although maybe the riba and the peg at the same time, don't know, but perhaps after month nine beginning to taper off both if my doc doesn't think I can get insurance to let me taper off after 48 weeks. I'd already been thinking, oddly enough, about these issues in the hospital.
It was all due to my IV. I use phenergan every time I'm hospitalized. It's pretty caustic on the skin. But I hold up ok with it. We are talking a BUNCH of surgeries. So, this time I noticed that my arm is having HUGE reactions to the phenergan. There are huge red streaks all the way up each blood vessel every time its administered (I have horrible veins, this is the only time I have ever even SEEN the veins in my arms except at the elbows and wrists). These lines became raised and puffy and large. Both arms became covered and entirely swollen. They almost had to use my neck they'd put in so many IV's. And I was like, what the hell?
Then I realized... oh. The interferon. It is causing my body to react against this caustic substance. Then I thought, I wonder how my body is going to react to the sudden cessation of interferon, particularly with my interesting auto-immmune mix of stuff anyway. And I thought, wouldn't it be better if I eased my body out of this at the end so my own immunity can come back online? I mean my body already doesn't make blood well. Maybe I ought to ease off of this stuff at the end, give it time to adjust...
I wasn't suggesting Deb take more Peg, just differentiating what Deb is doing from my understanding of "tapering off the Peg". My comments that a prudent approach to tapering would be that the taper take place *after* SOC was not directed to Deb or any actutes, which as you suggest may adhere to different tx criteria. As to being "overdrawn", I guess that's the burden that all pretty young women face. The Alabama artists must be tired :)
-- Jim
-- Jim
I know you'd rather that it be the reverse, more peg, less riba, but Deb's an acute, along with me, so using the rationale that she could have cut tx at 6 mos and still SVR'd, ANYTHING she's doing now is gravy, no? Or am I missing something. Just got home and haven't had time to pull all of those studies yet. Plus... I'm overdrawn lol
I speculate that tapering at the end of standard treatment might also help the considerable number of people who get post-treatment problems, since those problems seem to have a clear immunological basis. There is no research into this so far, but it would be worthwhile to conduct a study or two IMO
That is sort of my understanding as well, but I consider 72 weeks beyond SOC and different, for example, if someone started tapering at let's say week 40 which would be shortening SOC by eight weeks.
I did 72 weeks at full dose and tapered down the for an additional 4 weeks and relapsed. My doctor said more than likely the taper down idea would have nothing to do with SVR or relapse. The virus was either dead at 72 or not.
The whole immune system is very complex. There is a "Darwin theory" that suggests, the stronger a person's immune system is, the quicker the virus mutates which makes it harder to destroy. That theory fits me, I haven't been sick in at least 10 years.
Jim, I believe Kalio was reducing about 2 months before completing 72 weeks.
The whole immune system is very complex. There is a "Darwin theory" that suggests, the stronger a person's immune system is, the quicker the virus mutates which makes it harder to destroy. That theory fits me, I haven't been sick in at least 10 years.
Jim, I believe Kalio was reducing about 2 months before completing 72 weeks.
Jim, no HR was not advocating anything but answering my question and adding a little insight from his research and knowledge of treatment.
Pro, How are you and your doc going to monitor "careful tapering"?
There will be no careful taper monitoring at the end of my 48 weeks of treatment except the SOC testing at the 3, 6 and 1 year pcr marks. BUT, (The first 2 week blood test which the doctor ordered after EOT (48 weeks) will be the Lab Corp. HCV QuantaSure Plus (serial) Quantitation plus CBC’s and Thyroid test). “Meaning when I complete my 48 weeks in the first week of February, I will have completed the SOC as prescribed by the doctor. BUT, rather than stopping abruptly as prescribed by SOC at the end of treatment, I will in the 49 week (Friday night) reduce the Interferon by a quarter and drop the riba from 600mg evening dose to 400mg and continue the 400mg morning dose regime until the 50th week in which I will cut the Interferon to a half dose of the past tx dose and reduce the riba from 400mg to 200mg (Friday night) and 200mg Saturday morning and follow through the rest of the week with that regime. In week 51 (Friday night) I will reduce the Interferon by another quarter and drop the riba to 100mg in evening and 100mg in am and continue that regime for the rest of the week. In week 52 (Friday night) I will take my last quarter shot of Interferon and no riba because of its half life and then get on with life and hopefully as before treatment.
I had reduced the Riba in week 20 (with doctors ok) because of the sx it was causing so I have all the missed doses in storage and an additional Interferon prescription for a month so that is covered.
I am NOT advocating this to anyone except for myself because it is a best course of action for me and it is a better alternative than just stopping abruptly and suffering the possible consequence of post tx symptoms and HR just confirmed what most of us know as common since. No body knows your body better than you.
The Thyroid test at week 2 will tell me and I will feel if it has gone from Hypo to Hyper but will have to see how that turns out.
The Procrit will be reduced as needed by the 2 week blood test and go from there.
Call me crazy for going the extra 4 weeks but what is the risk and what is the reward.
jasper
Pro, How are you and your doc going to monitor "careful tapering"?
There will be no careful taper monitoring at the end of my 48 weeks of treatment except the SOC testing at the 3, 6 and 1 year pcr marks. BUT, (The first 2 week blood test which the doctor ordered after EOT (48 weeks) will be the Lab Corp. HCV QuantaSure Plus (serial) Quantitation plus CBC’s and Thyroid test). “Meaning when I complete my 48 weeks in the first week of February, I will have completed the SOC as prescribed by the doctor. BUT, rather than stopping abruptly as prescribed by SOC at the end of treatment, I will in the 49 week (Friday night) reduce the Interferon by a quarter and drop the riba from 600mg evening dose to 400mg and continue the 400mg morning dose regime until the 50th week in which I will cut the Interferon to a half dose of the past tx dose and reduce the riba from 400mg to 200mg (Friday night) and 200mg Saturday morning and follow through the rest of the week with that regime. In week 51 (Friday night) I will reduce the Interferon by another quarter and drop the riba to 100mg in evening and 100mg in am and continue that regime for the rest of the week. In week 52 (Friday night) I will take my last quarter shot of Interferon and no riba because of its half life and then get on with life and hopefully as before treatment.
I had reduced the Riba in week 20 (with doctors ok) because of the sx it was causing so I have all the missed doses in storage and an additional Interferon prescription for a month so that is covered.
I am NOT advocating this to anyone except for myself because it is a best course of action for me and it is a better alternative than just stopping abruptly and suffering the possible consequence of post tx symptoms and HR just confirmed what most of us know as common since. No body knows your body better than you.
The Thyroid test at week 2 will tell me and I will feel if it has gone from Hypo to Hyper but will have to see how that turns out.
The Procrit will be reduced as needed by the 2 week blood test and go from there.
Call me crazy for going the extra 4 weeks but what is the risk and what is the reward.
jasper
proactive.....I know, was kidding really. I am following as the Doc say's when finished. Does make you think though as our immunes must go thru a lot to get back to normal after months of the meds.
HELPME........................................
also 'kidding' there, with UND it's 'gone' and we all know it can fast return so we continue with tx. My comment was more as I have to reduce now for the remaining 12 weeks and 'hoping' it's gone :}
I am sorry you haven't reached SVR and hopefully all the studies going on do mean someone 'cares' and that even relapsers will have a chance at newer drugs, in case they have become more resistant to the ones they have done. With this disease..........there is just no predicting so many things.
AND............... we care :}
LL
LL
HELPME........................................
also 'kidding' there, with UND it's 'gone' and we all know it can fast return so we continue with tx. My comment was more as I have to reduce now for the remaining 12 weeks and 'hoping' it's gone :}
I am sorry you haven't reached SVR and hopefully all the studies going on do mean someone 'cares' and that even relapsers will have a chance at newer drugs, in case they have become more resistant to the ones they have done. With this disease..........there is just no predicting so many things.
AND............... we care :}
LL
LL
I think you should keep in mind, as hr mentioned there are no tapering comparative studies.
I unfortunately believed gone gone gone the first time w/inter, then the 2nd time, after the first with peg, and my count is over100,000, I dont believe anything except if it comes back and we keep on going on tx when will develop resistents to these drugs and who will care
Missed the original thread this all came from but you gave a LOT to 'ponder' George! It really does make a lot of sense, the tapering off theory. H*ll, I'm having to lower in tx and NOW thinking about tapering off too! Really is something that needs more research, and as jmjm said ......
"If/when such a test becomes available, then the guesswork out of "when to stop" should be taken out of the equation"..................................
would be a huge difference in tx, SVR rates, QoL and so on.
You got me 'pondering'!
jmjm............
I don't know what I believe but of course *prefer* to believe that if if the virus is gone, it's gone. Gone, dead, gone, kinda gone :) .................................
That's my thinking :} Especially in reducing now.
LL
"If/when such a test becomes available, then the guesswork out of "when to stop" should be taken out of the equation"..................................
would be a huge difference in tx, SVR rates, QoL and so on.
You got me 'pondering'!
jmjm............
I don't know what I believe but of course *prefer* to believe that if if the virus is gone, it's gone. Gone, dead, gone, kinda gone :) .................................
That's my thinking :} Especially in reducing now.
LL
How are you and your doc going to monitor "careful tapering"?
"6 to 8 weeks of careful tapering is what you might want to discuss with your doc."
"6 to 8 weeks of careful tapering is what you might want to discuss with your doc."
Got it. Thanks for clarifying. However, not sure that HR has advocated tapering off before SOC is finished, if that is what you inferred. Actually don't know one way or another. In Kalio's case, she was well beyond SOC before she started the taper.
-- Jim
-- Jim
No, we are in total agreement about “no where in between” with out consulting with the doc.
But after posting and re-reading the “”But I’m sure everyone will come to their own conclusion or at least a thought of, around week 35 after being through hell as to what is best for them at the end of TX. I am glad it was brought up by a notable researcher with more in depth knowledge and hands on aspects of the nitty gritty of hepc treatments for which my lingering questions have been answered as with a few others.””
I thought it came across a little snubbing sarcastic or maybe it’s just the morning after meds messing with me, can't keep that jasper locked up all the time, LOL! Nuff said.
jasper
But after posting and re-reading the “”But I’m sure everyone will come to their own conclusion or at least a thought of, around week 35 after being through hell as to what is best for them at the end of TX. I am glad it was brought up by a notable researcher with more in depth knowledge and hands on aspects of the nitty gritty of hepc treatments for which my lingering questions have been answered as with a few others.””
I thought it came across a little snubbing sarcastic or maybe it’s just the morning after meds messing with me, can't keep that jasper locked up all the time, LOL! Nuff said.
jasper
Meant to say "per two posts ago" where you said
"By all means as jim has mentioned.... AT THE END OF TREATMENT and no where in between with out first consulting with your doctor."
Sounded to me like we were/are on the same page?
"By all means as jim has mentioned.... AT THE END OF TREATMENT and no where in between with out first consulting with your doctor."
Sounded to me like we were/are on the same page?
I don't think I understood your last post enough to be affected either way :) I thought we were in agreement per your post before this one. Was there something I said after you want to put up for discussion?
-- Jim
-- Jim
and by no means was the last post any slant towards you. Your contributions have been and are a grounding base for lots of folks coming here for good solid information.
jasper
jasper
Yeah, I’ve been kinda sick the past 40 weeks “O” and am still wondering if it’s gone. Man, you covered all the bases on that one. LOL!
But I’m sure everyone will come to their own conclusion or at least a thought of, around week 35 after being through hell as to what is best for them at the end of TX. I am glad it was brought up by a notable researcher with more in depth knowledge and hands on aspects of the nitty gritty of hepc treatments for which my lingering questions have been answered as with a few others.
Cheers!
Jasper
But I’m sure everyone will come to their own conclusion or at least a thought of, around week 35 after being through hell as to what is best for them at the end of TX. I am glad it was brought up by a notable researcher with more in depth knowledge and hands on aspects of the nitty gritty of hepc treatments for which my lingering questions have been answered as with a few others.
Cheers!
Jasper
It would be great if more research money went into such tests, but I doubt the profit potential/motivation is anywhere near as great as that a new 'wonder' drug would bring.
There are currently T-cell as well as Nk (natural killer cell ) tests available which measure the rise and fall of these cells. HIV patients use them frequently to gauge their immune fitness I believe.
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