Aa
News items, other thoughts, thanks, open thread
Here are a few things that caught my eye recently:
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16251813&query_hl=9">Hepatitis C virus populations in the plasma, peripheral blood mononuclear cells and cerebrospinal fluid of HIV/hepatitis C virus-co-infected patients</a>
This study suggests some troubling items: HCV RNA independently replicating in cerebrospinal fluid. And differing genotypes of HCV RNA in different 'compartments' of the body, suggesting each compartment may possess the ability to be an indepenent replicatory breeding arena.
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16144125&query_hl=7">Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a>
This story points out the need for any SVR to keep an eye on the state of the health of their liver over time - based upon the experiences of occult HBV.
(post continued below)
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16251813&query_hl=9">Hepatitis C virus populations in the plasma, peripheral blood mononuclear cells and cerebrospinal fluid of HIV/hepatitis C virus-co-infected patients</a>
This study suggests some troubling items: HCV RNA independently replicating in cerebrospinal fluid. And differing genotypes of HCV RNA in different 'compartments' of the body, suggesting each compartment may possess the ability to be an indepenent replicatory breeding arena.
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16144125&query_hl=7">Occult viral hepatitis and noncirrhotic hepatocellular carcinoma</a>
This story points out the need for any SVR to keep an eye on the state of the health of their liver over time - based upon the experiences of occult HBV.
(post continued below)
<u>mikesimon</u> - always good to see you, Mike. Congratulations on the continuing good news via your most recent PCR. I didn't do ex-tx, so I'm just a lightweight when it comes to interferon hangovers. I hope that your recovery from both tx and the accident is still going well. For some strange reason, everytime I watch "American Chopper" on TV you come to mind.
<u>DoubleDose</u> - likewise, good to see you here also. I think with the small amount of research dollars and attention that are currently focused on chronic HCV infection and it's associated sx's, expecting any of those dollars to migrate to the study of the effects of occult is hopeful thinking. So, let's both be hopeful. Best to you.
<u>chevygal55</u> - glad to hear things are doing well with you. Thanks for asking about me and my garden. The garden is in much worse shape than me. It got pretty well annilated over the last few months from the combination of voles, deer and drought. I don't know how the farmers do it.
<u>Eisbein</u> - amazing to think that you (and Sandi) have been going at it this long. Continue to hang tight and daydream of dead virons and repaired hepatic infrastructure. When I think of long-distance and interferon I can't help but think of a friend of mine who was diagnosed with Chronic Myelogenous Leukemia (CML) and spent the next 6.5 years doing DAILY doses of interferon - until the drug Gleevec came along. The interferon took a toll on him, but he's still around for his wife and kids, thank God. This after he was told back in 1995 that the average life span post-CML diagnosis was 6 years. Hold on, SVR is in your not-to-distant future.
TnHepGuy
<u>DoubleDose</u> - likewise, good to see you here also. I think with the small amount of research dollars and attention that are currently focused on chronic HCV infection and it's associated sx's, expecting any of those dollars to migrate to the study of the effects of occult is hopeful thinking. So, let's both be hopeful. Best to you.
<u>chevygal55</u> - glad to hear things are doing well with you. Thanks for asking about me and my garden. The garden is in much worse shape than me. It got pretty well annilated over the last few months from the combination of voles, deer and drought. I don't know how the farmers do it.
<u>Eisbein</u> - amazing to think that you (and Sandi) have been going at it this long. Continue to hang tight and daydream of dead virons and repaired hepatic infrastructure. When I think of long-distance and interferon I can't help but think of a friend of mine who was diagnosed with Chronic Myelogenous Leukemia (CML) and spent the next 6.5 years doing DAILY doses of interferon - until the drug Gleevec came along. The interferon took a toll on him, but he's still around for his wife and kids, thank God. This after he was told back in 1995 that the average life span post-CML diagnosis was 6 years. Hold on, SVR is in your not-to-distant future.
TnHepGuy
the limitations of fast typing, points get accross at half speed!
Well, that is an interesting theory on the weakening by the alcohol consumption which often goes along with faulty nutrition, none of which can be any good, even without hep c.
There was one person that kept spreading this rumor that a drink could zap hep c back into your blood, so I was making sure, your comment was not based on that rumor. ;-}
I had an occasional drink prior to tx, had special days(mother's day, xmas) mimosas or wine during tx(after my PCR came negative), and had my first beer after my negative 3 mo post tx PCR. PCR at 10 mo is still negative. If you have no liver damage, are SVR, and no addiction problems, occasional red wine(good for cardiac health) should be no problem. If hcv hasn't zapped back in by now in my blood...
I will share a cyber glass, once you are clear.
Well, that is an interesting theory on the weakening by the alcohol consumption which often goes along with faulty nutrition, none of which can be any good, even without hep c.
There was one person that kept spreading this rumor that a drink could zap hep c back into your blood, so I was making sure, your comment was not based on that rumor. ;-}
I had an occasional drink prior to tx, had special days(mother's day, xmas) mimosas or wine during tx(after my PCR came negative), and had my first beer after my negative 3 mo post tx PCR. PCR at 10 mo is still negative. If you have no liver damage, are SVR, and no addiction problems, occasional red wine(good for cardiac health) should be no problem. If hcv hasn't zapped back in by now in my blood...
I will share a cyber glass, once you are clear.
I've only been on the Lunesta for about 3 wks. On the days that I take it, it does help me sleep for longer intervals, however, I still wake up at least once in the middle of the night to go to the bathroom. I've noticed a bit more of a hangover with the Lunesta than I did with the Ambien so, if I'm going to be driving on any extended car trips, I have to skip the Lunesta the night before. I actually had the last really good sleep cycles back when I was off of treatment for 5 mon. I had some good 7 hr in a row, sleep nights.
Susan
Susan
Well, I never really believed SVR was a "cure", but I'd take it, yes indeed! (10/24, 80k/wk Procrit). Huzzah to all SVR's!!!! I'm glad I started to take care of myself when diagnosed in 1993. I was never a big drinker so it was ironic that I had to pretty nearly totally cut it out. So, I'd like to have a glass of wine, etc., in moderation.
If SVR, I will closely follow SVR/occult infection, assuming (in my SVR dreams) I'll need to re-treat down the road with some less toxic knock-out punch.
Procrit, my mean, mean best friend.
Ease to all
deb
If SVR, I will closely follow SVR/occult infection, assuming (in my SVR dreams) I'll need to re-treat down the road with some less toxic knock-out punch.
Procrit, my mean, mean best friend.
Ease to all
deb
<u>cuteus</u> - the Gordon paper is mostly speculation, looking to what is known of HBV occult infection and throwing out a warning flag for HCV occult infection. I hope that some researchers pick the ball up, find funding and go after long-term studies of the effects of occult HCV. Once again, we are all the guinea pigs.
I don't know if co-infection with HIV would make one more likely to have cerebrospinal fluid infection. I would speculate that it would also be found independantly in HCV mono-infected individuals, as well. Besides the finding of another area of compartmentalization of viral replication, this study points to a direct neurological link with the virus - and the beginnings of a possible explaination for certain related sx's and conditions previously unknown, overlooked or 'poo-pooed' by doctors and researchers.
<u>jmjm530</u> - SVR should no longer be viewed as, or spoken of, as a pure 'cure'. Occult HCV appears to be a fact-of-life for some (perhaps all?) SVR's, and maybe even for spontaneous clearers. So little is know about the effects that such a low-level chronic infection poses, that the best researchers can do at the moment is to look at HBV patients and gleen what little than can from their experiences and try and apply that to HCV occult.
In general terms, I now see HCV infection as being 'two-tiered'. Prior to achieving SVR (or spontaneous clearance), the chronic infection has completely overwhelmed the immune system and has the ability to cause massive liver damage and other many non-hepatic concerns. Post-SVR, one is left with a chronic viral infection that still has the ability to replicate, but at an enormously lower level - possibly being held in check/balance by the immune system. Sadly, as has been shown in HBV patients, it can come roaring back when the immune system becomes greatly compromised (transplant, etc). But so little is known about it's effects on the body and immune system that it just cannot be written off as being something merely 'benign'. Having achieved SVR - and being extremely thankful for all of the great and huge benefits that come with being such - as much as I'd love to, I do not consider myself to be either 'cured' nor 'virus-free', by any means. And as such will be paying close attention to my own personal situation and to any new research in the area.
As far as the future of blood testing and occult infection goes, I think a wonderful step forward would be if they could determine at an individual level the exact point a patient 'tips over' from full-blown HCV to the occult stage, which would better allow what you suggest - being able to time the actual end-point of tx.
I was diagnosed in 1992 - shortly after it officially became HCV. Later that year I got my first taste of interferon and became one of the more than 90% of non-responders to the initial mono alpha interferon. When I learned that the odds for me (geno 1) were in the 50% range with the new peg and riba combo, I was thrilled. When I learned even more through looking at various papers, studies, etc and realized that my personal starting odds were even higher (more likely in the 60% range), I was ecstatic. Now, having reached SVR, I am both thankful for the great gifts it brings, yet cautious of the future.
TnHepGuy
I don't know if co-infection with HIV would make one more likely to have cerebrospinal fluid infection. I would speculate that it would also be found independantly in HCV mono-infected individuals, as well. Besides the finding of another area of compartmentalization of viral replication, this study points to a direct neurological link with the virus - and the beginnings of a possible explaination for certain related sx's and conditions previously unknown, overlooked or 'poo-pooed' by doctors and researchers.
<u>jmjm530</u> - SVR should no longer be viewed as, or spoken of, as a pure 'cure'. Occult HCV appears to be a fact-of-life for some (perhaps all?) SVR's, and maybe even for spontaneous clearers. So little is know about the effects that such a low-level chronic infection poses, that the best researchers can do at the moment is to look at HBV patients and gleen what little than can from their experiences and try and apply that to HCV occult.
In general terms, I now see HCV infection as being 'two-tiered'. Prior to achieving SVR (or spontaneous clearance), the chronic infection has completely overwhelmed the immune system and has the ability to cause massive liver damage and other many non-hepatic concerns. Post-SVR, one is left with a chronic viral infection that still has the ability to replicate, but at an enormously lower level - possibly being held in check/balance by the immune system. Sadly, as has been shown in HBV patients, it can come roaring back when the immune system becomes greatly compromised (transplant, etc). But so little is known about it's effects on the body and immune system that it just cannot be written off as being something merely 'benign'. Having achieved SVR - and being extremely thankful for all of the great and huge benefits that come with being such - as much as I'd love to, I do not consider myself to be either 'cured' nor 'virus-free', by any means. And as such will be paying close attention to my own personal situation and to any new research in the area.
As far as the future of blood testing and occult infection goes, I think a wonderful step forward would be if they could determine at an individual level the exact point a patient 'tips over' from full-blown HCV to the occult stage, which would better allow what you suggest - being able to time the actual end-point of tx.
I was diagnosed in 1992 - shortly after it officially became HCV. Later that year I got my first taste of interferon and became one of the more than 90% of non-responders to the initial mono alpha interferon. When I learned that the odds for me (geno 1) were in the 50% range with the new peg and riba combo, I was thrilled. When I learned even more through looking at various papers, studies, etc and realized that my personal starting odds were even higher (more likely in the 60% range), I was ecstatic. Now, having reached SVR, I am both thankful for the great gifts it brings, yet cautious of the future.
TnHepGuy
It's not. It a separate test called an iron study. They'll usually order a ferritin test too. Mine was ordered to make sure there was enough iron for procrit - but it went the other way - enough for procrit with enough left over to armour the Merrimack.
yes the iron issues concern me for many reasons. my last ferritin was 890 up from the previous 725. i emailed the Dr expressing concern because they had ordered a test for hemochromatosis and i questioned if it was because of the iron abnormalities citing the fact i have thalassemia as a reason for iron aberrations. his response was that if the saturation (total iron as a % of iron binding capacity) was above 45% with an elevated ferritin level then i should be tested for hemochromatosis. the two tests i saw were 43% & 46% so being i had the script i had the test done yesterday. also as you mentioned (my mom an RN did as well) the iron may become more of a problem because of the thalassemia and ribavirin causing even more rbc damage elevating the levels further. i'm no Dr but at this point am really getting ticked at the stuff i'm running across. the problem of hijacking is why i was trying to get people such as yourself on another board where there are no restrictions. there's a lot of good input from members here that needs to be disseminated better. i don't care if "there are no doctors here" as i've stated before you don't need a Phd to be intelligent and most of the people here have a greater vested interest in beating this virus as opposed to anyone else.
thanks
thanks
Thanks. I have my next week lab orders. I'll put a check mark next to any iron test I see.
I take a pretty relaxed attitude to this. I try to bounce between thighs based on the last one I put that med in (peg, procrit, neupogen), but I might also go for the one that wasn't hit the last time around regardless of the med. I have a couple little bruises that I avoid, and one old scar, but that's about it.
I've read here about dots, X'es, charts, and who knows what all. I just ready, fire, aim - attempting to spread things around. Is this an issue if I have no outward signs of trauma (no dots, no red, no bumps, no nothin')? Do I need to be more careful about not repeating the same spots?
I've read here about dots, X'es, charts, and who knows what all. I just ready, fire, aim - attempting to spread things around. Is this an issue if I have no outward signs of trauma (no dots, no red, no bumps, no nothin')? Do I need to be more careful about not repeating the same spots?
FWIW i've been pretty much the same just trying not to wear a spot out. i started on my abdomen then went to swapping thighs after a bit i'll probably go back to the abdomen and give the thighs a rest...i don't see it as a real science. one thing is that i was doing injections right from the fridge. then i started letting them warm for a bit and after speaking with my mom she mentioned that she had read something that claimed as much if not more scarring can occur from the injection being cold then the actual injection.
did i mention i hate needles? =8^(
did i mention i hate needles? =8^(
According to my instructional video, you GENTLY roll the syringe in your palms for one minute to warm it up.
Also, my Peggasist nurse said that the current protocol no longer requires you to pull the plunger back to see if you have hit a vein. I didn't say it, but my goodness, update your stinking video then! Plus, the video doesn't mention to leave the needle in for a few extra seconds to make sure you get all of your meds. Also, while injecting, release the pinched skin. Neither of these items were mentioned in my video.
P.S. Todays' pet peeve: If my used needles are such a bio-hazard, why is getting rid of them so hard? Only the local (many miles away) health department takes them...not my Dr. or pharmacy. Does this make sense in the name of public safety?
MerrieJane
Also, my Peggasist nurse said that the current protocol no longer requires you to pull the plunger back to see if you have hit a vein. I didn't say it, but my goodness, update your stinking video then! Plus, the video doesn't mention to leave the needle in for a few extra seconds to make sure you get all of your meds. Also, while injecting, release the pinched skin. Neither of these items were mentioned in my video.
P.S. Todays' pet peeve: If my used needles are such a bio-hazard, why is getting rid of them so hard? Only the local (many miles away) health department takes them...not my Dr. or pharmacy. Does this make sense in the name of public safety?
MerrieJane
In response to your comment about more alcohol drinkers relapsing, I do not know of any studies, I was only attempting with my logic to understand why, in fact, they tend to relapse more often than non drinkers.
I guess that what I have come to believe is that perhaps those who are exposed to Hep C and who manage to kill every last virus and are not suffering with chronic Hep C, may very well have not used alcohol daily and therefore did not had a weakened, stressed liver and immune system and thereby were able to kill every virus in their body.
I guess, that I am thinking that perhaps part of the treatment involves "assisting" the body's natural immune system and that perhaps the poisons that initially kill the virus may perhaps be aided by our own improved liver and our hopefully improved immune system and that if we do not take up daily alcohol consumption again, that perhaps our own body will do final battle with the virus thereby preventing relapse.
And based on my own experience, I believe that perhaps once I find my body free of the nasty virus, I might like to return to occasional wine at dinner again, but am wondering if that might in fact be a very bad idea! I would think that people who have come to enjoy alcohol might find it very difficult to give it up permanantly and that may be part of the reason for the relapse, not past use but the tendency to continue to use it in the future, post treatment.
Pirate
I guess that what I have come to believe is that perhaps those who are exposed to Hep C and who manage to kill every last virus and are not suffering with chronic Hep C, may very well have not used alcohol daily and therefore did not had a weakened, stressed liver and immune system and thereby were able to kill every virus in their body.
I guess, that I am thinking that perhaps part of the treatment involves "assisting" the body's natural immune system and that perhaps the poisons that initially kill the virus may perhaps be aided by our own improved liver and our hopefully improved immune system and that if we do not take up daily alcohol consumption again, that perhaps our own body will do final battle with the virus thereby preventing relapse.
And based on my own experience, I believe that perhaps once I find my body free of the nasty virus, I might like to return to occasional wine at dinner again, but am wondering if that might in fact be a very bad idea! I would think that people who have come to enjoy alcohol might find it very difficult to give it up permanantly and that may be part of the reason for the relapse, not past use but the tendency to continue to use it in the future, post treatment.
Pirate
I got very little info on the study they are proposing for my husband. It is called the InterMune 003 whatever that is. I have looked and I know InterMune will involve infergen but that is all they could tell me for now. They said they will know more in 2-3 weeks. Said it was suppose to start in january sometime.
Anybody hear of this one?
Thanks!
Anybody hear of this one?
Thanks!
TnHepGuy: Glad to see you back again! Your input and research links are always highly appreciated!
Of course, the links above, as you might expect, do not shock me at all, because I still believe that there is much, much more to learn about the insidious ways of the HCV virus. I have always been concerned at the number of SVR's who seemingly continue to experience a wide range of HCV-like symptoms. Viral memory.....interferon hangover.....circulating immune complexes that just have not yet learned to behave.....these are the standard doctor answers.
My take is that maybe all these studies showing viral persistence, compartmentalized virus, cellular immunity to HCV in various patient tissues, and often in tissues of close contacts who are anti-HCV 'negative'....that maybe all these studies are on a path to something...something we may not want to know about.
I have been more relaxed lately about this whole issue, maybe more fatalistic...figuring that over time the puzzle pieces will all fall into place...with proper worldwide research and corroborating studies. I have been watching the odd findings produced by these studies, and taking in all the forum feedback from SVR's...to see if there is some pattern, or set of issues common after SVR. Discovering the underlying causes and mechanisms will be the real breakthrough. At this point I am happy to have an 'apparent' zero viral load, and a liver without any inflammation after almost thirty years of elevated lft's.
I sometimes doubt that I will ever feel fully 'right' again, and maybe that has to do with unproven persistence issues (which I suspect), and maybe not....but I do feel lots better than during the years leading up to my two tx'es.
I personally think we all need to keep this issue in the open, and keep an open mind on the implications. We need to follow the trail and get more answers, but at the same time, we need to restart our lives and experience the healing and change in health we have achieved. Kind of celebrate and rejuvenate, but with an eye to the future, and discovering ways to continue getting even 'more cured'.
Great to hear from you!
Jim: Best wishes to you as well. I know you have put in a lot of work on your tx, and are a strong support and voice on this forum. When we 'debated' a bit in the past, regarding some of my more audacious theories, I think it was very healthy. I see some scary patterns, and follow the logic in most cases, but I also get way ahead of myself and the research world in some of my speculation. I by no means mean to say that some of my very drastic concerns are in any way validated or proven by any research. I am only trying to follow the stream of logic based on some of my observations and anecdotal evidence.
Do keep me honest, and feel free to challenge off the wall stuff whenever it warrants. It is the only way we can get the breakthrough thinking we need to understand what is or is not really happening.
My concern about compartmentalized/ localized transmission, outside the bloodstream, is still just that: a concern based on some very strange observations, and fueled by research that sometimes indicates the virus MAY potentially reproduce in these other tissues/ organs/ systems. It is not a stretch to envision virus that reproduces in salivary tissues, then moving to other salivary tissues when there is sufficient contact. BUT, the underlying assumption, that the virus reproduces in these tissues, is still in dispute, being questionned, and fuzzy....though a variety of studies say it actually DOES! That would be disturbing...and point to 'occult' infection in many, that may not be in the blood or liver. But again, my aggressive speculation only...but supported by findings of cellular immunity in tested tissues of close personal contacts, etc.
So, bottom line, I am now quietly waiting to see which shoe drops next. I don't have the means to validate or rebut any of my concerns. So I am trying to speculate less, and enjoy more. I know that will be relieving to many on the forum. I have tried to not be provocative for it's own sake, but to explain odd observations I have noted among various 'non-HCV infected' contacts and relations. I may be WAY out in left field ultimately, and I REALLY hope that is the case, to be frank about it. But I do not like the research that keeps pouring out, around the world. Disconcerting at least.
Keep up the great fight, and get CURED! By any standard, it is where you want to be...and will be!
Best to all of you on the forum.
DoubleDose
Of course, the links above, as you might expect, do not shock me at all, because I still believe that there is much, much more to learn about the insidious ways of the HCV virus. I have always been concerned at the number of SVR's who seemingly continue to experience a wide range of HCV-like symptoms. Viral memory.....interferon hangover.....circulating immune complexes that just have not yet learned to behave.....these are the standard doctor answers.
My take is that maybe all these studies showing viral persistence, compartmentalized virus, cellular immunity to HCV in various patient tissues, and often in tissues of close contacts who are anti-HCV 'negative'....that maybe all these studies are on a path to something...something we may not want to know about.
I have been more relaxed lately about this whole issue, maybe more fatalistic...figuring that over time the puzzle pieces will all fall into place...with proper worldwide research and corroborating studies. I have been watching the odd findings produced by these studies, and taking in all the forum feedback from SVR's...to see if there is some pattern, or set of issues common after SVR. Discovering the underlying causes and mechanisms will be the real breakthrough. At this point I am happy to have an 'apparent' zero viral load, and a liver without any inflammation after almost thirty years of elevated lft's.
I sometimes doubt that I will ever feel fully 'right' again, and maybe that has to do with unproven persistence issues (which I suspect), and maybe not....but I do feel lots better than during the years leading up to my two tx'es.
I personally think we all need to keep this issue in the open, and keep an open mind on the implications. We need to follow the trail and get more answers, but at the same time, we need to restart our lives and experience the healing and change in health we have achieved. Kind of celebrate and rejuvenate, but with an eye to the future, and discovering ways to continue getting even 'more cured'.
Great to hear from you!
Jim: Best wishes to you as well. I know you have put in a lot of work on your tx, and are a strong support and voice on this forum. When we 'debated' a bit in the past, regarding some of my more audacious theories, I think it was very healthy. I see some scary patterns, and follow the logic in most cases, but I also get way ahead of myself and the research world in some of my speculation. I by no means mean to say that some of my very drastic concerns are in any way validated or proven by any research. I am only trying to follow the stream of logic based on some of my observations and anecdotal evidence.
Do keep me honest, and feel free to challenge off the wall stuff whenever it warrants. It is the only way we can get the breakthrough thinking we need to understand what is or is not really happening.
My concern about compartmentalized/ localized transmission, outside the bloodstream, is still just that: a concern based on some very strange observations, and fueled by research that sometimes indicates the virus MAY potentially reproduce in these other tissues/ organs/ systems. It is not a stretch to envision virus that reproduces in salivary tissues, then moving to other salivary tissues when there is sufficient contact. BUT, the underlying assumption, that the virus reproduces in these tissues, is still in dispute, being questionned, and fuzzy....though a variety of studies say it actually DOES! That would be disturbing...and point to 'occult' infection in many, that may not be in the blood or liver. But again, my aggressive speculation only...but supported by findings of cellular immunity in tested tissues of close personal contacts, etc.
So, bottom line, I am now quietly waiting to see which shoe drops next. I don't have the means to validate or rebut any of my concerns. So I am trying to speculate less, and enjoy more. I know that will be relieving to many on the forum. I have tried to not be provocative for it's own sake, but to explain odd observations I have noted among various 'non-HCV infected' contacts and relations. I may be WAY out in left field ultimately, and I REALLY hope that is the case, to be frank about it. But I do not like the research that keeps pouring out, around the world. Disconcerting at least.
Keep up the great fight, and get CURED! By any standard, it is where you want to be...and will be!
Best to all of you on the forum.
DoubleDose
While I don't share all your concerns, your studies and out-of-the-box thinking on occult virus opened my mind to whole new avenues of thought on this disease. Please keep coming back with more stuff or just to chew the fat. Glad you also feel more relaxed about things. Stress is a killer, perhaps even more than the virus.
-- Jim
-- Jim
I too have a lower than normal Hmg. Mine is 12.8 as of 10/27/2005 and my RBC is 4.01 which is also a bit low. I've been off TX since June 27th, 2004 so I too am having one long hangover. Like you (I think) I did extended TX and my surgeon warned me that I might have a residual anemia from all the TX but I just wanted to clear and was willing to risk it. I feel okay with a Hmg of 12.8 and wouldn't even know I was low were it not for the labs. My WBC is >6 so that's no problem and overall my labs look great - and my Heptimax of 10/27 was clear too. Mike
the study was not done on SVRs it seems. Last yr there was a debate here about the brain barrier and whether hcv could cross it and interferon too...it got heated(surprise). The feeling is that if the blood can reach the tissue, so can the meds and thus eliminate the hcv.
as for the case and the steroid, it seems that the person might not have been a true SVR, we don't know what PCRs were performed and how sensitive they were, but it apparently was not sensitive enough to detect a very low viral load this woman was harboring. So when steroids were given, the virus was able to replicate more, when they stopped the med, the VL went undetected again. I think this is a case of a unique immune system and not so much of an SVR relapsing, but it makes for good speculation and leads to a publishing which always is the goal of researchers.
as for the case and the steroid, it seems that the person might not have been a true SVR, we don't know what PCRs were performed and how sensitive they were, but it apparently was not sensitive enough to detect a very low viral load this woman was harboring. So when steroids were given, the virus was able to replicate more, when they stopped the med, the VL went undetected again. I think this is a case of a unique immune system and not so much of an SVR relapsing, but it makes for good speculation and leads to a publishing which always is the goal of researchers.
that seemed to be the conclusion of the person I spoke to at VRTX. I missed last year's discussion as I didn't even lurk then. I am currently re-scouring the abstracts at AASLD to see if I find anything.
Sorry to hijack...wanted to convey some links to crushed.
Best place to start in looking for info on thalassemia is
www.thalassemia.org and www.cooleysanemia.org
There's an inherent conflict in treating Hep C in thal patients due to iron buildup. To be quite honest, I'm not exactly sure how it works. My general idea is that because our RBCs aren't as efficient and don't live as long as normal RBCs, they tend to spill their iron into the bloodstream, which in turn can cause hemachromatosis, leading to iron buildup in the liver (which causes scarring, and could cause cirrhosis -- a problem my mother, dx'd with thal beta intermedia, was dealing with) and/or the heart.
As far as tx for Hep C is concerned, it's my understanding you don't want to have too much iron as it will inhibit the efficacy of the meds.
HOWEVER...(and this worries me)...when you have a patient dealing with hemolytic anemia from the riba and you're trying to counter that effect with Procrit, Procrit actually needs iron to do its magic in stimulating the marrow to make new RBCs.
So if your docs are telling you (like my reg doc is) that thalassemia is not a concern, not even a factor, don't listen to it. Persist in pursuing it. I saw a thalassemia specialist, after feeling ill at ease with my docs waving off the thal factor, who is absolutely adamant I get rid of the Hep C no matter what it takes because of the inherent risk down the road of buildup of iron, which will be a double-whammy on the old liver combined with those little viruses.
BTB, my mom treated for hemochromatosis after she insisted...INSISTED...that there was something wrong when her routine blood tests showed outrageously high ferritin levels. By the time she got a proper liver bx, she was already showing signs of cirrhosis. Mind you, she doesn't have the complications of Hep C, nor was she a drinker, or have any other liver damage risks.
Fortunately, she was able to treat with desferol (sp?), which chelates the iron from her liver, and she's doing fine. Actually goes to spinning classes. Better woman than me. :)
Hope this helps.
Best place to start in looking for info on thalassemia is
www.thalassemia.org and www.cooleysanemia.org
There's an inherent conflict in treating Hep C in thal patients due to iron buildup. To be quite honest, I'm not exactly sure how it works. My general idea is that because our RBCs aren't as efficient and don't live as long as normal RBCs, they tend to spill their iron into the bloodstream, which in turn can cause hemachromatosis, leading to iron buildup in the liver (which causes scarring, and could cause cirrhosis -- a problem my mother, dx'd with thal beta intermedia, was dealing with) and/or the heart.
As far as tx for Hep C is concerned, it's my understanding you don't want to have too much iron as it will inhibit the efficacy of the meds.
HOWEVER...(and this worries me)...when you have a patient dealing with hemolytic anemia from the riba and you're trying to counter that effect with Procrit, Procrit actually needs iron to do its magic in stimulating the marrow to make new RBCs.
So if your docs are telling you (like my reg doc is) that thalassemia is not a concern, not even a factor, don't listen to it. Persist in pursuing it. I saw a thalassemia specialist, after feeling ill at ease with my docs waving off the thal factor, who is absolutely adamant I get rid of the Hep C no matter what it takes because of the inherent risk down the road of buildup of iron, which will be a double-whammy on the old liver combined with those little viruses.
BTB, my mom treated for hemochromatosis after she insisted...INSISTED...that there was something wrong when her routine blood tests showed outrageously high ferritin levels. By the time she got a proper liver bx, she was already showing signs of cirrhosis. Mind you, she doesn't have the complications of Hep C, nor was she a drinker, or have any other liver damage risks.
Fortunately, she was able to treat with desferol (sp?), which chelates the iron from her liver, and she's doing fine. Actually goes to spinning classes. Better woman than me. :)
Hope this helps.
As far as tx for Hep C is concerned, it's my understanding you don't want to have too much iron as it will inhibit the efficacy of the meds.
----------------------------------------------------------
Yup - heard that too. Thing is, I have high iron on tx - but didn't before. They're saying it was the massive die off of RBC, and that makes sense. I think it's in the riba literature. But then doesn't everyone with riba induced anemia have the iron situation? Apparently not. Anyone know why not?
----------------------------------------------------------
Yup - heard that too. Thing is, I have high iron on tx - but didn't before. They're saying it was the massive die off of RBC, and that makes sense. I think it's in the riba literature. But then doesn't everyone with riba induced anemia have the iron situation? Apparently not. Anyone know why not?
I don't dispute the discovery of occult virus in some individuals although if I remember correctly, some studies suggest not in all individuals, which raises a number of other issues.
It's the significance of the finding that remains very open to speculation and certainly further studies are needed. There are many viruses co-existing with we humans in a non-destructive way. Hopefully, this is the case with the Hep C occult virus. If not, the little occult buggers deserve to die and hopefully we will get them soon.
Personally, I will consider myself "cured" if I do SVR because SVR it's the best we got right now and studies do show it often stops or even reverses fibrosis and brings the odds of HCC closer to what they would be if you never had the virus. SVR may not be perfect, but neither is the rest of my beat-up 58-year old body. :)
I really appreciate what your your research and thoughts bring to the forum.
-- Jim
It's the significance of the finding that remains very open to speculation and certainly further studies are needed. There are many viruses co-existing with we humans in a non-destructive way. Hopefully, this is the case with the Hep C occult virus. If not, the little occult buggers deserve to die and hopefully we will get them soon.
Personally, I will consider myself "cured" if I do SVR because SVR it's the best we got right now and studies do show it often stops or even reverses fibrosis and brings the odds of HCC closer to what they would be if you never had the virus. SVR may not be perfect, but neither is the rest of my beat-up 58-year old body. :)
I really appreciate what your your research and thoughts bring to the forum.
-- Jim
I'd just be happy to at least, once, be considered an SVR, much less worrying about little viruses hiding. I've never heard the words, 'undetected' and I would love to hear them at least once, with as many times as I've treated. My last viral load dropped quite a bit, but still waiting to see if it's undetected when I get to 6 mon. PCR. I'm currently double dosing on the Ribavirin and doing daily Infergen and Procrit. Yes, I know, it's off label. The Procrit is keeping me from being anemic. I'm not on any antidepressants. I'm just taking Ultram, Tylenol for the fever and Lunesta for sleep. So far, I'm hanging in there, but not without praying a lot. I had a down moment this morning, had a cry and prayed hard and it went away. Every year around the holidays, I always feel depressed and then, when it's over with, I'm back to my normal self. It's mostly related to the fact that my son is usually unable to be with me with the extended family. He's 24 years old and is extremely mentally ill and has to live in a psych. state hospital. It's been a real heartbreaker for many years, but I have the Lord and he gives me the ability to press on. Anyway, I wish everybody well and a Christmas present of SVR to everyone on the boards this year.
Susan
Susan
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
