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Chances of re-emergence after a year of SVR?
I have now been a year SVR and am very worried because it seems like every week a new crop of strange symptoms appear. Lately I have been feeling extremely fatigued , toxic feeling and shaky. Also, experiencing alot of brain fog. I know the chances after a year of SVR of the virus coming back is slim but are there cases of just such a thing happening? The only thing I can attribute my symptoms to other than the virus being back is that my body may still be harboring residual medication (Riba). I figure that the literature states that it takes up to 6 months for Riba to leave the body entirely and I did do 3 treatments almost back to back. Do you guys think maybe its just the residual riba causing this toxic fatigued feeling and not the virus rearing its head? I honestly feel sicker and sicker every week since being off the meds. I shoulsd also note my last viral load test(Heptimax) was 1 month ago and it came up negative for the virus. Any thoughts, insight or experiences would be helpful thanks.
Thank you willing I just had that same "how can it be that long" moment when I read Brent say it's his one year since treatment. Man i'm not happy about how quickly I'm getting older but - I'm very glad that I am as the other option just ain't so swell!
for all practical purposes worrying about re-emergence seems about as practical as worrying about getting a call from your calculus teacher regarding a final you took many years back - 'hmm.. the answer to problem 4 doesn't look quite right.. we might have to reconsider that degree.."
still, for those still following the occult hcv debate, the war rages on. There's a recent overview from the Michalak lab
http://www.ncbi.nlm.nih.gov/pubmed/20070513
which is as adamant as ever about their results, and after reviewing various sensitive ways detection assays can fail cautions
"Taken together, the experience accumulated in recent years indicates that the detection of small amounts of HCV RNA, as it is the case in OCI, is a highly complex task which, because of the high sensitivity of the molecular approaches used and usually limited availability of viral genomic material, requires extreme care in preparation of samples, strict contamination-controlled conditions, and highly skilfull personnel paying diligent attention to procedural details."
also two new sources of data. A French long-term follow up with strong data (including mitogen stimulation of PBMCs) arguing nay (which Mike already posted a while back)
http://www.ncbi.nlm.nih.gov/pubmed/20002658
and a recent Italian study arguing aye:
http://www.ncbi.nlm.nih.gov/pubmed/19956542
In principle this shouldn't be a metaphysical debate - the PCRs either detect or they don't and chaining two researchers, one from each camp, to the same lab bench until they agree should yield an answer. A more likely outcome is that new sequencing technology will answer the question. I recently heard a talk by Bob Schafer, a virology researcher at Stanford who has been using new "ultradeep" sequencing technology to track viral resistance and other variation in viral subpopulations - here are slides from an '07 talk:
http://www.informedhorizons.com/hepdart2007/pdf/hepdart07_presentations/Tues_03_Shafer.pdf
Seems that by increasing coverage enough, they can sequence variation right down to the error-rate of the polymerase (about 1/10**4?) - which should make it possible to track minute minorities in viral populations. In fact, for those participating n clinical trials, chances are Vertex/Merck may already have some of this data from your blood draws as part of resistance screening - not that they're likely to share it with you.
nygirl - 3 years - already? CONGRATULATIONS!
still, for those still following the occult hcv debate, the war rages on. There's a recent overview from the Michalak lab
http://www.ncbi.nlm.nih.gov/pubmed/20070513
which is as adamant as ever about their results, and after reviewing various sensitive ways detection assays can fail cautions
"Taken together, the experience accumulated in recent years indicates that the detection of small amounts of HCV RNA, as it is the case in OCI, is a highly complex task which, because of the high sensitivity of the molecular approaches used and usually limited availability of viral genomic material, requires extreme care in preparation of samples, strict contamination-controlled conditions, and highly skilfull personnel paying diligent attention to procedural details."
also two new sources of data. A French long-term follow up with strong data (including mitogen stimulation of PBMCs) arguing nay (which Mike already posted a while back)
http://www.ncbi.nlm.nih.gov/pubmed/20002658
and a recent Italian study arguing aye:
http://www.ncbi.nlm.nih.gov/pubmed/19956542
In principle this shouldn't be a metaphysical debate - the PCRs either detect or they don't and chaining two researchers, one from each camp, to the same lab bench until they agree should yield an answer. A more likely outcome is that new sequencing technology will answer the question. I recently heard a talk by Bob Schafer, a virology researcher at Stanford who has been using new "ultradeep" sequencing technology to track viral resistance and other variation in viral subpopulations - here are slides from an '07 talk:
http://www.informedhorizons.com/hepdart2007/pdf/hepdart07_presentations/Tues_03_Shafer.pdf
Seems that by increasing coverage enough, they can sequence variation right down to the error-rate of the polymerase (about 1/10**4?) - which should make it possible to track minute minorities in viral populations. In fact, for those participating n clinical trials, chances are Vertex/Merck may already have some of this data from your blood draws as part of resistance screening - not that they're likely to share it with you.
nygirl - 3 years - already? CONGRATULATIONS!
My doc isn't testing me for viral load anymore either - last test was 10 months after end of treatment, he gave me a paper certificate of successful completion of treatment with SVR as the result and told me to get out of his office and don't come back. This was in a major treatment centre in my area as well and this doc knows his stuff.
Have you seen a doctor and gotten a workup done? You might have other issues going on there that need to be addressed. Thyroid? Testosterone check? Keep digging and keep hanging in there.
Trish
Have you seen a doctor and gotten a workup done? You might have other issues going on there that need to be addressed. Thyroid? Testosterone check? Keep digging and keep hanging in there.
Trish
First: Congratulations on slaying the dragon!
Alcohol can damage your liver, but the idea that it can reinfect you with the virus or reactivate is pretty far fetched. So, don't drink, but don't worry about reinfection from it.
You can be reinfected by the same routes that causes original infections: IV drug use, blood transfusion (not very likely these days), or other ways that would expose your blood to the blood of an infected person. Just stay away from blood, in general. Note that medical care professionals always treat blood as though it might be infected. You should, too. Tattoos might be ill advised as well.
FWIW, quite a few people report some symptoms long after finishing treatment. I am not sure anyone really knows if it is a direct result of treatment or not. I finished treatment exactly on year ago tomorrow! I still have a few issues regarding brain fog and fatigue that I think might be TX related, but there is really no way to know.
Good luck.
Alcohol can damage your liver, but the idea that it can reinfect you with the virus or reactivate is pretty far fetched. So, don't drink, but don't worry about reinfection from it.
You can be reinfected by the same routes that causes original infections: IV drug use, blood transfusion (not very likely these days), or other ways that would expose your blood to the blood of an infected person. Just stay away from blood, in general. Note that medical care professionals always treat blood as though it might be infected. You should, too. Tattoos might be ill advised as well.
FWIW, quite a few people report some symptoms long after finishing treatment. I am not sure anyone really knows if it is a direct result of treatment or not. I finished treatment exactly on year ago tomorrow! I still have a few issues regarding brain fog and fatigue that I think might be TX related, but there is really no way to know.
Good luck.
I posted this earlier for another question but thought it pertinent to your question.
I frequented this forum several years ago when I started the pegasys treatment. I believe it has been 5 years now since I did the 52 week protocol. Unfortunately, I did not sustain remission.. finding out 3 months after ending treatment. So, I ended up still having Hep C geno type 1 with a bunch of side effects from treatment that I still suffer from 5 years later.
I had to quit my job as a teacher and still struggle with my life’s purpose. The hardest thing for me to deal with is the cognitive problems, focus, memory and depression. Most of the aches and pains I have been able to control with Reiki, a Japanese form of relaxation and stress reduction. I highly recommend it.
It has been a crazy journey over the last 5 years and I never thought I would still be suffering side effects from drugs I took so long ago. If I could go back and change it I would never have tried the interferon. I was only at a stage 1. My doctor could of recommended for me to wait for something better...with more than a 50/50 chance to sustain remission. I had plenty of time, there should have been no hurry. But, he was doing a study . I was gullible and sure I would eradicate this disease from my system.
Before the treatment, my main symptom was fatigue. If only that was all I had to deal with now. I have learned not to trust doctors and to take my health in my own hands. Eat healthy, get rid of as many chemicals in the house and switch to more natural products (ie. cleaning, body care ect). I studied natural alternatives, essential oils, massage, yoga, meditation, Reiki. I finally quit taking my last and final medication… my anti depressant a few months ago. My doctor had a fit saying that all of the symptoms I am experiencing is because I have a chronic disease, hepc, and with chronic diseases you always have depression. She said that the depression was causing my problems with memory, focus, concentration, pain…and everything else that it was not from the interferon. “Here, let me give you another pill….don’t worry about the side effects it may create.”
She also told me that none of her other patients who used interferon were dealing with theses issues so… in effect it made me feel like I was crazy… it was all in my head.
I was so frustrated that I decided to go to a natural path with a MD. She ran a series of blood work on me and found out that my adrenals are in crisis, my thyroid is not working properly, my liver is totally inflamed again, among several other problems….and guess what all of these conditions cause.. anxiety, depression, sleep related problems ect… So now I am taking supplements to put everything in balance and hopefully all will be better. If I would have listened to my OLD doctor, I would be taking another antidepressant while various systems of my body were suffering and shutting down.
I have been on disability through the school district I used to teach for , for the last 3 years. They are taking Social Security to court to get back some of the money they invested in me.SS already turned me down once , the first time they filed. I talked to their lawyer last week and she told me that she has represented many clients who treated with interferon who are suffering the same lingering side effects as I do. Thank you GOD for the validation…thank goodness I decided to get a second opinion instead of taking another “harmless little pill”
Moral to the story: be careful trusting doctors, get second opinions, research, research, research. There are a lot of tools out there to help you help yourself. Try to find one that heals the problem…not the symptom.
I frequented this forum several years ago when I started the pegasys treatment. I believe it has been 5 years now since I did the 52 week protocol. Unfortunately, I did not sustain remission.. finding out 3 months after ending treatment. So, I ended up still having Hep C geno type 1 with a bunch of side effects from treatment that I still suffer from 5 years later.
I had to quit my job as a teacher and still struggle with my life’s purpose. The hardest thing for me to deal with is the cognitive problems, focus, memory and depression. Most of the aches and pains I have been able to control with Reiki, a Japanese form of relaxation and stress reduction. I highly recommend it.
It has been a crazy journey over the last 5 years and I never thought I would still be suffering side effects from drugs I took so long ago. If I could go back and change it I would never have tried the interferon. I was only at a stage 1. My doctor could of recommended for me to wait for something better...with more than a 50/50 chance to sustain remission. I had plenty of time, there should have been no hurry. But, he was doing a study . I was gullible and sure I would eradicate this disease from my system.
Before the treatment, my main symptom was fatigue. If only that was all I had to deal with now. I have learned not to trust doctors and to take my health in my own hands. Eat healthy, get rid of as many chemicals in the house and switch to more natural products (ie. cleaning, body care ect). I studied natural alternatives, essential oils, massage, yoga, meditation, Reiki. I finally quit taking my last and final medication… my anti depressant a few months ago. My doctor had a fit saying that all of the symptoms I am experiencing is because I have a chronic disease, hepc, and with chronic diseases you always have depression. She said that the depression was causing my problems with memory, focus, concentration, pain…and everything else that it was not from the interferon. “Here, let me give you another pill….don’t worry about the side effects it may create.”
She also told me that none of her other patients who used interferon were dealing with theses issues so… in effect it made me feel like I was crazy… it was all in my head.
I was so frustrated that I decided to go to a natural path with a MD. She ran a series of blood work on me and found out that my adrenals are in crisis, my thyroid is not working properly, my liver is totally inflamed again, among several other problems….and guess what all of these conditions cause.. anxiety, depression, sleep related problems ect… So now I am taking supplements to put everything in balance and hopefully all will be better. If I would have listened to my OLD doctor, I would be taking another antidepressant while various systems of my body were suffering and shutting down.
I have been on disability through the school district I used to teach for , for the last 3 years. They are taking Social Security to court to get back some of the money they invested in me.SS already turned me down once , the first time they filed. I talked to their lawyer last week and she told me that she has represented many clients who treated with interferon who are suffering the same lingering side effects as I do. Thank you GOD for the validation…thank goodness I decided to get a second opinion instead of taking another “harmless little pill”
Moral to the story: be careful trusting doctors, get second opinions, research, research, research. There are a lot of tools out there to help you help yourself. Try to find one that heals the problem…not the symptom.
I'm still pretty young (36) and I'm not taking Lexapro. My diet is excellent but the last few months I have actually been slowly going down hill and feel like I did when on treatment(lethargy,fatigue,liver pain) instead of getting better I feel worse. I still feel like my body is in major detox mode, you know. Could I still be detoxing this long after treatment has finished?
There was a time that you wrote that you were taking lexapro (or similar). Still taking it? Are you getting older? How's the diet, weight, exercise and related factors like BP and blood sugar, other health factors. Don't just fixate on hcv, that's in your past.
I can tell you that I’m about 1.5 years out, and my doctor will no longer test for HCV; that’s how convinced they are of SVR durability. I treated with a large research and transplant center; this isn’t a local GI making these statements.
As far as ribavirin is concerned, I think any residual after six months is far-fetched. The half life in serum/plasma is reported at 12 days; non-serum compartments for as long as it takes to turn over red cells. This occurs art roughly 90-100 days; I know this because I’m diabetic, and the A1c test is a ‘glycosylated hemoglobin’ test; it relies heavily on this timing.
As HCV is a virus, I can’t imagine alcohol somehow ‘reactivating’ a viral infection. When it’s gone, it’s gone. There have been anecdotal reports of immonusuppression possibly interacting with ongoing low-level viremia; in that case, it’s doubtful that SVR had been achieved to begin with. Of course, this opens up the door for discussion of occult/persistent virus. And most importantly, these are anecdotal reports; I’m unfamiliar with any documented reports.
If it were me, I’d discuss this with the doc; most likely, there are other issues at play.
Good luck—
Bill
As far as ribavirin is concerned, I think any residual after six months is far-fetched. The half life in serum/plasma is reported at 12 days; non-serum compartments for as long as it takes to turn over red cells. This occurs art roughly 90-100 days; I know this because I’m diabetic, and the A1c test is a ‘glycosylated hemoglobin’ test; it relies heavily on this timing.
As HCV is a virus, I can’t imagine alcohol somehow ‘reactivating’ a viral infection. When it’s gone, it’s gone. There have been anecdotal reports of immonusuppression possibly interacting with ongoing low-level viremia; in that case, it’s doubtful that SVR had been achieved to begin with. Of course, this opens up the door for discussion of occult/persistent virus. And most importantly, these are anecdotal reports; I’m unfamiliar with any documented reports.
If it were me, I’d discuss this with the doc; most likely, there are other issues at play.
Good luck—
Bill
PS remember our bodies have been through living hell on the meds - they aren't ever going to be younger than they were before we started down the road.........unfortunately!
if a glass or two of wine made that big a difference we'd all be relapsed by now - believe me. I'm sure it's probably just a coincedence.
To this date I have good days and bad - mostly I forget all about it. But unfortunately LOTS Of us have developed stomach issues we never had before, they can mimic the idea of liver pain pretty well (like once I convinced myself I had a lump and kept poking and poking until I actually DID have pain cause I"m an idiot ;)
I am of the mind if you don't have the virus you could drink a bottle of Jack and how could it come back? If you don't have the flu you aren't going to get it from a couple glass of wine right?
I don't believe much i the occult virus stuff - mostly because of just these reasons I've never seen anybody just come down with the virus again cause they had a glass of Crystal. Isn't feasible.
I don't know what could be causing the brain fog except stressing probably isn't helping at all. If you are REALLY concerned go get the test then you'll see you are fine and maybe all the symptoms will resolve. I am thinking positively here!
To this date I have good days and bad - mostly I forget all about it. But unfortunately LOTS Of us have developed stomach issues we never had before, they can mimic the idea of liver pain pretty well (like once I convinced myself I had a lump and kept poking and poking until I actually DID have pain cause I"m an idiot ;)
I am of the mind if you don't have the virus you could drink a bottle of Jack and how could it come back? If you don't have the flu you aren't going to get it from a couple glass of wine right?
I don't believe much i the occult virus stuff - mostly because of just these reasons I've never seen anybody just come down with the virus again cause they had a glass of Crystal. Isn't feasible.
I don't know what could be causing the brain fog except stressing probably isn't helping at all. If you are REALLY concerned go get the test then you'll see you are fine and maybe all the symptoms will resolve. I am thinking positively here!
What really has me spooked is that these awful symptoms of fatigue, liver pain and swelling along with brain fog have intensified in the last few weeks ever since I had a few glasses of wine and haven't gone away since. Could drinking alcohol somehow re-activate the virus? NyGirl do you still experience any of these symptoms still?
Saint don't worry I don't believe there is a snowballs chance that you relapsed after a year.
Many of us find that after so much interferon for so long (face it a normal typical tx isn't what we've really done any longer) that all sorts of things crop up. Tomorrow is my three year SVR anniversary and yes while I get these things sometimes I've always been UND - even just six months ago.
The odds have to be staggering against it happening and honestly I don't remember one person that we knew well in here that it has ever happened to. Ever.
Many of us find that after so much interferon for so long (face it a normal typical tx isn't what we've really done any longer) that all sorts of things crop up. Tomorrow is my three year SVR anniversary and yes while I get these things sometimes I've always been UND - even just six months ago.
The odds have to be staggering against it happening and honestly I don't remember one person that we knew well in here that it has ever happened to. Ever.
In wondering if there was any connection between feeling the after effects of treatment when the meds were stopped and little research out there about Ribavirin that I had started doing a little research myself and had come to the conclusion that the miracle of ribavirin is still a mystery to everyone. It did seem to me that if the ribavirin was locked in the red blood cells until the cell was replaced some 6 months after the last dose and 40 more days after that until the cell was replaced why wouldn’t it be logical for it to remain in the brain aqueous compartments even longer, yup just a mystery.
http://aac.asm.org/cgi/reprint/32/1/117.pdf
It appears
that aerosol administration of ribavirin allows the drug to go
directly to the brain via the carotid arteries, while the
parenterally administered drug must first pass the liver,
where much of it is eliminated from the serum. Accumulation
of ribavirin in the brain suggests that ribavirin is trapped
within the aqueous compartments of the brain and has a
greater half-life than it does in serum. Since the active
intracellular form of ribavirin is ribavirin triphosphate, it is
important to determine if the higher, sustained levels of
ribavirin also are reflected in higher ribavirin triphosphate
levels.
http://aac.asm.org/cgi/reprint/32/1/117.pdf
It appears
that aerosol administration of ribavirin allows the drug to go
directly to the brain via the carotid arteries, while the
parenterally administered drug must first pass the liver,
where much of it is eliminated from the serum. Accumulation
of ribavirin in the brain suggests that ribavirin is trapped
within the aqueous compartments of the brain and has a
greater half-life than it does in serum. Since the active
intracellular form of ribavirin is ribavirin triphosphate, it is
important to determine if the higher, sustained levels of
ribavirin also are reflected in higher ribavirin triphosphate
levels.
Also, I forgot to note that I have been having liver pains as well as that "swelling" feeling in my liver.
Glad to hear the third time was a charm. I have also wondered about the riba as it has taken me 18 months to start to feel as close to normal as before treatment. The fatigue, insomnia and muscle weakness still came in waves after tx but has finally settled down. Hope symptoms subside for you going forward.
jep
jep
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