Hi, I received my first UND in July and then my Peg/riba treatment was interupted off and on the next few months due to illness. I am still receiving treatment for an opportunistic lung infection which is apparently very stuborn. I am post transplant also so my immune system was pretty low. Also I worked in a hospital in a highly infectious area. Won't do that again. Anyway I have had no treatment for the HCV since Sept. My November VL came back UND. I was thrilled but a little surprised
I asked my doctors if I could start the Peg/riba again so as not to loose this opportunity to acheive SVR but they all seem to put the question off or refer it to another doctor for approval. Final say was to come from the transplant team in Miami. They don't see me until Dec 12th and was told to wait until I was seen. My nurse co-ordinator is out ill and no one is responding to my plea for more immediate help.
I feel better than I have in months. No doctor has givin me a reason for any kind of interaction with the ribasome I am taking. Last Wed I had blood drawn and my liver enymes had elevated from 14 to the 50's. Scared me. I took the peg and riba on Thanksgiving on my own. Seemed bad to wait for appointments when the meds are in the fridge. After about 6 hours I had a bad flu-like reaction but the next day I was better and am continuing to do well.
Do you think I messed things up> I am planning to take it again on Thursday. By the time my Dec 12th appointment rolls around I will have taken it 3 weeks. If I feel ok which uspectI will should I tell the
The tests were Bayer and only down to 615 IU/ml. I am 1a genotype. I treated for approx 70 weeks to get my first UND in July, then had to stop treatment and Aug it came back 750,000. Started treatment and it was UND in Sept, not tested in Oct. Became ill and had to stop treatment again but it was still UND in Nov. I don't want to loose this opportunity especially since I have the meds. I think the doctors are just trying to cover themselves but I don't think the virus cares much when my appointment is. When I saw the liver enymes jump I just did it. So far no problem. Just don't know if owning up to it will cause a problem or maybe solve theirs. Thank you so much for answering
Sally,,,sorry to hear you are having problems. If I was you,,,I would get a PCR as soon as possible if that means having your family dr do it and if you are detectable then make your appointment next month to decide best stragedy for you go on this. Once you have stopped the meds for a period,,,,you pretty much have to start back from square 1. I understand what you are saying about having them in your fridge but I don't think I would take them now until you find out if you have a viral load.
I think if you're in the middle of fighting a 'stubborn' lung infection, the doctors are doing better than "just trying to cover themselves" - sounds like they might have an honest interest in your well-being.
Thanks for all response. I guess I still have time next week to decide if I will continue. Maybe I will press to talk to my doctor again. I just really hate to start over at this point. I have 10 more days on the ribasome and I really feel much better. I will take all you say in to consideration. Wishing you well
I had spent hours looking for a study that I had bookmark a while back and could not find it. It dealt with controlled interruption of tx, and how subjects achieved SVR with it. People were treated, then tx stopped for two wks and then restarted. It allowed for the immune system to develop a way to keep hcv away. maybe you did too. it could be that the interruption and restart is all you needed to get svr. I will be at work tomorrow and that is where I have that bookmark, I'll see if i can find it. Two months off tx and you are still neg, is a good sign. but it could come back or it could stay down, no way of knowing unless they do better testing.
Link below to the 2004 abstract on the "controlled interruption" approach mentioned. I found this approach very intriguing and followed up on it some earlier this year. Reliable sources then suggest that while they achieved non-detectible virus up to 4 months post controlled interruption or "pulse" therapy, all relapsed and therefore no SVRs. My understanding is that this work may still be continuing as a "missing link" may be looked for -- perhaps combing SOC pulsed therapy with a third agent such as an experimental vaccine, VX-950 or even Alinia. The last two mentioned agents just my opinion.
That said, your situation is different as your first tx didn't conform to the pulsed approach as it was much longer. Still, who knows how these things work. Fact is your non-detectible for two months and that should be encouraging. Personally, I wouldn't start taking any drugs at this point without getting your doctors onboard.
Here's the link to the abstract. Scroll down to Poster 398.
I mentioned this approach to "HR" a few weeks ago, so flagged him in case he hasn't run across this approach.
The approach appealed to me because of it's elegance, i.e. customizing tx duration due to immune system response. Some might require just one "pulse", someone else two pulses, other more. But no one getting more meds than they need.
Each "pulse" being the time it take to become non-detectible given I believe weekly VL tests. Then the drugs are stopped and monitoring continues until either it comes back (when the second pulse would start) or until SVR is reached.
Elegant in *theory*, yes, but since no SVRs, the pulse approach is not yet ready for prime time :)
Do you know the name of the drug that is from India that boosts the effects of interferon? I know it's not approved here, but your designer tx intrigued me....I wish the darn dr's weren't so scared to try a few off label drugs on us, especially if we are at risk of not SVR or relapse.
aha! I was hoping you had bookmark that one and were peeking in at some point. It is funny how I come accross some of these studies, obscure ones sometimes, while looking for other stuff altogether, but when I actually try to do a web search for it specifically it does not come up in any of the results. I hate search engines! I am glad you saved it at home. I have more stuff saved at work than at home, and i end up needing them at the wrong time. I remember the study as being one with very few subjects in it.
It seems to be an approach used mostly with HIV mono or coinfected.
The therapeutic approach of stopping treatment to let a newly upcoming viremia induce a stronger immune response has been used also in HIV - it was called "structured treatment interruptions" - and in HBV where they called it " in vivo therapeutic immunization". "Pulse therapy" where the retreatment was started according to a fixed schedule independent of reoccurrence of viremia, was also used. Unfortunately, none of these approaches worked as well as hoped. The main reason for this is, that in any viral disease - while the immune response is best elicited by moderate amount of viral particles - the dominant aspect is that you must never let the virus regain "genomic power" that is the capacity to adapt using massive amounts of genomes as base. You want particles as immunostimulants, but they need to be without genomes within. Here comes in the concept of therapeutic vaccination - a broad field with good efforts but little success to date, both in HBV, HIV and HCV. What mostly riles up the immune system is extrahepatic presence of virions, fully structured viral particles, not component vaccines. Intercells vaccine for HCV remains to be further evaluated....
I used to fear any chance of reinfection after getting my SVR, and went to great lengths not to reuse any old scissors, cosmetic items, workshop tools, toothbrushes, safety pins, etc. I am not sure anymore that those things are really worthy of much concern. From recent comments, articles, and events, I am now more concerned about HCV 're-activation' than re-infection. I think that we need to be very wary of immuno-suppressive medications, extreme immune system events (someone who does a binge drinking celebration after SVR, or becomes very ill from some other cause, etc), and anything that might be able to allow any remaining virus that is in 'remission' or 'in-check' phase to re-emerge or cross this 'barrier' known as SVR. I am beginning to really believe that this is an actual possibility, even though the percentages are probably very, very low. If it does work this way, there are probably a handful of things that all of us will want to absolutely avoid throughout our future lives.
HR:...Here comes in the concept of therapeutic vaccination - a broad field with good efforts but little success to date, both in HBV, HIV and HCV. What mostly riles up the immune system is extrahepatic presence of virions, fully structured viral particles, not component vaccines. Intercells vaccine for HCV remains to be further evaluated....
I think the idea was next to combine the structured treatment interruptions with the experimental vaccine, but not sure if that has been done yet. It is interesting that while no SVRs, they did achieve prolonged EOT viral negativity for up to four months, with relatively little exposure to the SOC treatment drugs. Again, maybe the experimental vaccine -- or some other third agent like VX or Alinia -- may be the missing link. Meanwhile, these short-term transitory "SVRs" might be construed as "super maintenance therapy" although no follow-up studies on liver histology I'm aware of.
In reference to RTS's post below "HR-Question about re-treatment" -- do you give any credence to his supposition that his relapse somewhere between 3 and 6 months post treatment was caused by a dental procedure? Apparently he was VL negative via Heptimax at 3-months post treatment and then positive at six months. Also, how common do you think this is? I've read recently that the 3 month post correlates very closely with the six months so this would put him in a very small group I would think.
Related -- I SVR'd as measured by Heptimax three months ago after 54 weeks of tx and an RVR (via Heptimax) at week 6. In another month or so I'm planning on having a tooth implant which of course requires surgery placing the implant device into bone or sinus. Do you think this might have any negative consequences virus-wise and would you put the procedure off?
Ah, the dental fear. I went as far as to tell my dentist to make sure not to reinfect me, and asking questions as to how they sterilize their tools. I had extensive dental work during and after tx. Still negative by PCR. It would have been ironic to get re infected with my own virus at his office. It did not happen. Ask freely about their sterelizing procedures. I have seen receptionists handle the tools without gloves sometimes...unacceptable.
I would definitely get a more sensitive viral load test. I am geno 1a post transplant also, and I cannot get undetectable at less than 25 ml/iu even though I have been below 615 iu/ml for the last eight weeks:
My concern with the dental procedure is not reinfection, but reactivation as suggested by RTSs thread where he relapsed somewhere between the 3 and 6 month post treatment point and mentioned his dental work as a possible cause.
The tooth implant or any surgery exerts some stress on the body with temporary reduction in immune effectiveness.
In the future we might have temporary no sides HCV shielding drugs for such occasions. You could even now use a 20% Pagasys dose in and around that time to be really safe.
But if you fear reinfection from an external source - your chances should be about the same as for anyone in these procedures. If no vaccine will be found, there will be 20 Million HCV cases in the USA by 2018 or so....
Chances are obviously still quite small and it probably is better not to be overrestrictive- do what really needs to be done, but dont tatoo " I beat HCV"....
Sorry not much time today.
Jim , could you possibly supply a list of actual literature citations - papers- that deal with the isuue of durability after SVR - up to 10 years.? The ones that I have so far look good - but not that good - as you mentioned at several occasions.
Obviously, the point made so convincingly by another member a few threads up - that reinfection from the outside needs to be considered and figured in- must be searched for carefully in the methods section of these papers...
How come Peter Ferenci ( with whom I worked in Vienna BTW, long time ago) did not find anyone with increased HCV RNA considering that some of those should have been iv drug users, with all that risk of reinfection.. A few numbers and methods here need careful investigation.
No fear of reinfection, the question only related to "reactivation" of virus due to what you term reduction in immune effectiveness. Specfically, would you recommend the surgery now (I'm 9 months non-detectible since stopping the treatment drugs) or would you wait until after the one year mark. Taking any type of interferon drug prophalacitvely is not an option I would even consider. The second part of that question is have you ever heard of an actual relapse after SVR for something like a dental procedure or simple operation. Thanks.
The reason for the second part of the question is that I assume a certain proportion of SVRs have dental work in the year following treatment and yet we all know the HCV durability studies. I'm not trying to answer my own question -- or perhaps I am :) -- but simply concerned because of RTSs relapse with a dental procedure mentioned as a possible cause. So on one hand I don't believe there's a problem, but on the other I'd like as much info as possible. I understand the theory behind reactivation, but if indeed documented cases are either non-existent or rare, doesn't that shoot holes in the theory?
Child:Jim, I am not on the right path here? having "persistant"
virus in tissues and such after being non-detectable then comes back right? 3- 6 mo right?
If something comes along like surgery or such would that not reactivate the virus,even if undec. for a year or so, if it is like hiding somewhere?
That's the theory but IMO it has to be balanced by the incredible sparcity of relapses after six months -- and especially one year post treatment. If no one is really relapsing -- as defined as detectible HCV RNA in serum -- then where is the reactivation? I believe there are one or two documented cases but IMO that's too small a number to draw firm conclusions from.
Jim, you said:
As to HCV coming back after "some years" I only know of one or two documented cases, so one really has to be suspicious of what one hears in this regard. What double dose and others are talking about is altogether different. They're talking about "persistent" virus meaning it's non-detectible in your blood but seemingly present in tissues and the lymphatic system. So far there are proven clinical consequences for the persistent virus and for all we know it may be totally benign. Time will tell.
No, what I am talking about with the virus coming back after years of SVR (in the immunosuppressed cases), has everything to do with 'persistent HCV after SVR'. This persistent virus after SVR may be the 'remission' form of the virus, which is now being held in check by the immune system. If an extreme shock to the immune system takes place, thus effectively shutting it down for a period of time, the virus might then re-activate, and begin to reproduce beyond the control of the immune system, thus being 'reactivated' and becoming the chronic, active HCV infection that we all are very familiar with.
My conjecture is that the 'persistent virus' is exactly what causes those cases of rare relapse. Similarly, the people who have 'spontaneously cleared' the HCV virus, by the way, also seem to have the same evidence of 'persistent HCV' in their bodies in various tissues, etc. (and similar symptoms) These people would also be at risk for a 'reactivation' of the chronic infection if they became immuno-compromised, but again, since they cleared it initially years before, they might just clear it again. Those who got their SVR from combo medications would probably not be so lucky.
Hopefully, I clarified my statment in C25 above. In any event I think we are now in agreement on both the definition of "persistent" virus and "reactivation". It was the reactivation issue I was addressing in terms of immuno-suppresive type events like surgery and how they may or may not affect SVR. But again, so that we're clear, I'm defining "reactivation" as a change from HCV RNA negative to HCV RNA positive in serum after SVR.
Assuming we both agree on that definition, what study(s) are you basing your following statement on:
"No, what I am talking about with the virus coming back after years of SVR (in the immunosuppressed cases), has everything to do with 'persistent HCV after SVR'. This persistent virus after SVR may be the 'remission' form of the virus, which is now being held in check by the immune system. If an extreme shock to the immune system takes place, thus effectively shutting it down for a period of time, the virus might then re-activate, and begin to reproduce beyond the control of the immune system, thus being 'reactivated' and becoming the chronic, active HCV infection that we all are very familiar with."
To the best of my knowledge there have been only one or two cocumented cases of this type of "reactivation" and it seems that you really can't draw conclusions from one or two isolated cases.
That compared to several studies -- over 1000 patients -- that suggest SVR is durable around 99 per cent over a 5-10 year period and closer to 100 per cent after being non-detectible for the one year mark.
if we are going to assign post tx dental work a place in RTS's relapse, then how is it that we are not acknowledging the role of surgery in other post tx members and their SVRs. We can't address post tx stress as a factor, but ignore those of us who underwent extensive dental work that included root canals, extractions, bridge prep and mounting, surgery for the arm or the hand, celebration with alcoholic beverages, etc, all BEFORE the year was up post tx. You can't focus in one and not the other. If I am still negative, after all these procedures and medications and drinks, prior to my first yr post tx, and I am sure I am not the only one, how is it that we are placing so much value in the dental work being a factor in rts' relapse? it makes no sense. He is one person and I am one person. 50/50. hardly able to make a connection one way or the other.;
Cuteus, you do understand we are in agreement here? I only raised the issue of RTSs dental work because he did, and because others have been suggesting (like DD and HR) that this type of event could potentially cause a "reactivation". I say where is the "meat", the studies, the data that supports this. Still, still, on a personal level I admit to a very small amount of anxiety regarding my impending dental work based on these discussions, even though my "rational" mind (and my doctors) don't see any issues. Since I'm going to have some dental work done sooner or later, I think a reasonable compromise might be to wait another three months until I'm one year SVR. Then, if I relapse, I will become the rarity that some researcher will write about :)
Your own caution about the dental surgery highlights your ambivalence about eradication, to some extent. Hey, we are all nervous about this issue...how could we not be, in light of all the recent research on persistent virus, findings of tissue based virus, relapsing SVR's on immuno therapy, etc. We can all hold up the garlic or the cross to the vampire and say 'its durable, its durable' etc. until the cows come home....but down deep we are all nervous about this issue. Your own concerns about medical procedures bring this home pretty clearly.
I am not saying the SVR is not durable...it has surely proven to be pretty much a 99%+ solution. What I am saying is: the virus may not be eradicated. It may be in remission. And if this is true, as most researchers are now implying, if not saying outright, then we would be prudent in asking some serious questions, and being cautious about certain medications...until we know much more. Jim, I have to believe that if there are just TWO relapsers, who were truly SVR on PCR for multiple years, then it is cause for looking much more closely at what SVR really implies.
DD: I am not saying the SVR is not durable...it has surely proven to be pretty much a 99%+ solution...(But the virus may be) in remission... And if this is true... then we would be prudent in asking some serious questions, and being cautious about certain medications (and procedures).
For discussions sake I'll accept the "99%+" solution. I figure at my age (almost 60) I have way more than a 1 per cent chance of succuming to more serious conditions than a theoretical relapse of the virus, and I imagine the same with you too. So, on a personal level then -- and please take this as a question from a friend -- why the worry and energy expense about something with less than a one per cent chance of happening? As to why I am concerned about the dental procdure, I think I've already categorized that thought process as a bit irrational, especially beyond the one year mark where the chance of relapse apparently falls from around one per cent to close to zero. So that's what I might do, wait another three months (the one year mark) since the dental implant is elective. This doesn't mean I undervalue research into this subject. Just don't think worrying about the durability of SVR in terms of medications and medical procedures is very rational.
Sometimes being cautious isn't being logical. Logically, I don't think I have anything to worry about with dental work, whatever, as studies suggest the durability of SVR. It just seems that the durability climbs from around 98-99% to close to 100% as you become non-detectible one year post treatment. As to HCV coming back after "some years" I only know of one or two documented cases, so one really has to be suspicious of what one hears in this regard. What double dose and others are talking about is altogether different. They're talking about "persistent" virus meaning it's non-detectible in your blood but seemingly present in tissues and the lymphatic system. So far there are proven clinical consequences for the persistent virus and for all we know it may be totally benign. Time will tell.
Here's a Ferenci study that has a 77% success rate for short course but it uses Pegasys not Peg Intron as I believe the Jensen study might have. In a similar fashion, studies with selected geno 2's and 3's using Peg Intron have shown similar SVR rates for 12 versus 24 weeks while the Pegasys studies used 16 weeks versus 24.
Apologies for the fragmented posting but unfortunately I've never saved these studies in an organized manner so I have to look them up from memory.
Here's a reference to a promising five-year study that cites SVR data between 99.2 per cent and I believe 100 per cent for the combo group. Also discusses the reinfection issue:
Lastly, the study I think I was looking for that goes ten years out which states in part:
"...All but one patient who achieved SVR (> 99%) still had undetectable HCV viral load after a mean follow-up period of 2.3 years (range 0.3-10.3). The authors concluded that advances in hepatitis C therapy have produced higher sustained response rates in the clinical setting. They also suggested that since this response appears durable, medium and long-term follow-up of patients with SVR is
Anecdotally, Dr. Ben Cecil, a hepatologist who is publically forthcoming with his practice data states:
"I have several hundred patients with sustained viral response and 2-3 have relapsed 12 months after their last injection. No one has relapsed later than one year, and I have been doing this for almost 7 years now."
I have heard similar anecdotal stories on SVR durability from others posting what their doctors told them.
Thank you, there is some variability here, but overall, considering the reinfection issue, the stability of SVR is quite remarkable. This issue is evenmore important if one considers the need to treat some of the ongoing side effects after tx and the question to what extent can we be "mildy immunosupressive" and not fear relapse.
Here is something, citing a Jensen study, right after the stability chapter in your ref. that puzzles me and makes me think of the reliability of some of this "second hand" reporting:
In this study of patients treated with Pegasys plus Copegus, data from 729 genotype 1 patients with week 4 results were available and analyzed. Of these, 146 patients had an RVR
Why would dental procedures be risky? As I said earlier, my x was told to take antibotics every time he had a dental procedure done after a heart valve infection. This was years ago, but what is it that stirs up virus/bacteria while doing dental work? Is it hiding in our teeth? How would these procedures compromise our immune system, unless it was already.
Here's one five-year study:
This one goes 9.18 years out:
Here is a compliation of articles on a number of SVR durability studies: http://www.natap.org/2004/HCV/083004_06.htm
I believe there is also another recent study that mentions 10 years which I will post if I can find again.
Also, Dr. Donald Jensen specifically speaks of studies suggesting the durability of SVR "5-10" years out in his video "Doc Eye for the Hep Guy" at the Clinical Options Website. You can fast-forward to the 8 minute mark for this portion of the presentation. I'm sure an email to Jensen from another doctor should produce the studies he's referring to.
Jensen mentions a figure 96% figure which seems to me quite conservative based on both some of the five years studies and what I have read anecdotally from doctors in the field. Perhaps the lower mark -- I've heard the close to 100% figure -- may be due to older studies initially using less sensitive testing, possibly monotherapy, fixed dose riba, and even HIV co-infection being mixed in -- or the reinfection issue already addressed. Just speculation on my part as I haven't read the full-text, only abstracts. Hope this is helpful.
I think the reference is to some of the shorter course studies for geno 1's that suggest 24 weeks of treatment is as effective as 48 weeks if two conditions are present -- RVR and low pre-tx viral load. The 89% SVR figure cited seems consistent with other shorter course studies such as the one the European Union? based their shorter course recommendation on.
I do agree, however, on the pitfalls of relying on "second hand" reporting. But sometimes even worse is relying on badly written and therefore potentially misleading abstracts. Fortunately, unlike myself and most here, you have easy access to the full-text.
I've spent a pretty penny myself during tx for full-text when
the articles I found related to important tx decisions. I have urged others to do the same and not rely on abstracts which is mostly what gets posted here.
I think the risk at the dentist is from improper care and sterilization of instruments. Procedures that involve "bony fragments" are riskier like tooth procedures or heart surgery. Dentists and heart surgeons have higher incidence of HCV than other specialties. The risk of contracting HCV through these procedures is far greater for the doctor than the patient I would think. The key problem as I see it with HCV is the fact that can live for 4 days (I've read up to 10 days in certain conditions)on any surface is significant. It is very durable virus. This is why clinical settings seem a logical mode of transmission due to the sheer numbers of people who pass through them. In these settings the poorest paid personnel are responsible for these tasks.
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