The slow road to recovery for some of us.

[Mugwump]

The more I read about how HCV antibodies can cause certain EHM the more I am convinced that many of us might have a reaction that creates large numbers of HCV antibodies for a period of time during and post successful DAA treatments.

EHM or extrahepatic manifestations of HCV, are a tricky thing to quantify and the studies done on them are only now starting to come to light.

The most important long term studies of those who cleared HCV infection with interferon treatments are a very good starting point.
http://cid.oxfordjournals.org/content/40/6/e49.full

The conclusion to date in this group of studies is that the levels of some forms of HCV antibodies reduce more quickly post treatment but the core HCV antigen takes longer to dissipate. So it is logical that EHM reactions including but not limited to mixed  Cryoglobulinemia  and increased levels of antithyroid hormone might also take longer to settle down for some of us who are now clear of HCV.
This paper sums things up the best:
http://www.jgld.ro/2007/1/10.pdf

Some of us do have a rough ride ahead and it seems that those of us who showed a genetic predisposition to developing EHM during the course of infection might take a long time to find some immune balance post treatment.

Hopefully some form of immune suppression will not become necessary for some of us who seem to be worse off post treatment and the road to recovery from chronic HCV infection will become better understood than it is now.

 
 

[Mugwump]

I just re-read the second Italian pdf and found something very interesting.

"Mooren corneal ulcerations are associated with HCV and can cause pain, inflammation, tearing and loss of sight"

In 2012 before treatment I had this happen. It is strange but what it does is create a distortion which looks very much like a soap bubble in your vision range. It has not completely gone but has become less noticeable over the years since treatment. I remember having sneezed hard and bingo the their was this bubble shape in my left eye field of vision.

The more I learn about EHM of HCV the happier I am to have the little buggers gone once and for all!

Cheers
Eric

[I fightis thetitis]

Hey Eric,

Thank you for the information.
I read the article and I am a little confused. So are you saying that the core antigen is different from HCV antibodies?

My understanding is that once cleared of the virus we will always have HCV antibodies and they do not multiply or reduce. What have you heard?

It seems that (and I am hoping) the further we get away from the date of clearing the virus, the stronger our immune systems become, therefore reducing the EHM.
Is that right?

I am so glad you are on this as the language in the PDF is not written in layman terms. 

Happy New Year!

Greg

[Mugwump]

It seems there is more than one type of beastie to deal with;

"For grade of HCV antibody determined by RIBA, the most significant decrease was observed with anti-NS5 antibody, followed by anti-NS4, anti-NS3, and anti-core antibodies, in that order. Tests for anti-NS5 and anti-NS4 antibodies had negative results in almost 50% of patients 10 years after eradication of HCV. In contrast, the results of tests for anti-core antibody were still markedly positive in most patients."

To clarify RIBA is the method of assay as noted in the study method statement;

HCV core antibody titer, third-generation HCV recombinant immunoblot assay (RIBA) grade (measuring the presence of antibodies for core, NS3, NS4, and NS5 antigens), and genotype-specific antibodies to the HCV NS4 region were measured annually with commercially available kits for these antibodies.

I am not up to speed on differences between the antigens but it is fairly safe to assume from what the study found that some types of antigens will dissipate more quickly thus relieving some of the stresses they can create.

How having persistent anti-core antibodies effects us in the long term is anyones guess but the encouraging news is that they to dissipate to a degree over time.

The study of the levels and post treatment effects of these anti-core antibodies (the ones that are first checked for with the common ELISA tests) as well as advanced assay studies of these and the other antigens HCV creates in us long term is possible for those of us who cleared the virus as the technology to do complex antibody assay does exist.

Something which unfortunately seems to not be on the radar of most North American clinicians but is very much on the radar of the Japanese medical scientists.

If the University Medical people in the US and Canada would only take notice there is much to learn about the human immune system from HCV. As I have stated in other posts the study of exactly how HCV manages to meddle with us could quite possibly lead to some very important medical breakthroughs in the field of immunology.

The really scary part of the other paper I quoted in the original post is that they found that HCV indeed seems to replicate in places other than the liver. So some of the EHM of HCV infections could easily be survival adaptation of the virus. Perhaps if HCV is not eradicated soon it has the genetic ability to mutate into something even more devastating that will eventually overcome the limitations of transmission from blood to blood that has kept it relatively in check to date.

"The biopsy shows a lymphocytic infiltration (CD4+) in the  upper  dermis,  with  vacuolar  degeneration  of  basal epithelium and the presence of acidophilic bodies, probably represented by apoptotic keratocytes (57). HCV seems to replicate in the epithelial (skin and mucosal) cells. Some studies  suggest  an  association  between  HCV-induced
cirrhosis and lichen planus, not infection alone."

This last shocking little tid bit I hope turns out to be a false alarm, but these are scientists and their speculation should be taken seriously. Even in Washington where science is becoming somewhat of a taboo these days!

Anyway here is hoping that in the long term we all see a drastic reduction in the levels of antibodies to HCV because I know they kicked my butt for over 40 years and I was effected more than many with the EHM of this curse.

Cheers
Eric

[WholeFoods]

Very informative and interesting info! I know I'm not alone when I say, I've become nearly obsessive in my post treatment awareness of contact with bodily fluids and open wounds. I once looked forward to not having those concerns, but the end result is quite different! I would imagine a bit of PTSD is playing into that.

[andrew j]

I'm the same (although I'm only 6 months-post).
... I'm still almost OCD in reln. to cleanliness, sanitation etc.

[Referring you your other post] I still seem to have a deep, residual tiredness.
Whether it has developed because of years of physical and psychological stress
(I was full-blown symptomatic for the best part of 20 years) - or whether the mechanism you describe is a factor (Eric), I'm not entirely sure.

I am older now, too, I guess.

[Lynn K]

Well I have my 20 month post treatment blood work back. Platelets still just above 100 at 107 so no improvement meaning I still have cirrhosis and portal hypertension. But on the bright side my upper endoscopy showed no reoccurrence of esophageal varicies and abdominal ultrasound no masses noted. My ALT and AST are also still in normal range.

So no improvement but no worse just steady as she goes.

[Sergey]

Some studies show that HCV replicates in very low concentrations, during many years after SVR, achieved with IFN-RIB treatment, in majority of people... For example -  http://cid.oxfordjournals.org/content/43/10/1277.long ,

Conclusions. HCV persisted and replicated in the livers and peripheral blood mononuclear cells of most sustained responders. Thus, these patients did not experience HCV infection clearance, despite apparent clinical disease resolution.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC415836/. These very low concertrations are detected by special ultrasensitive equipment, not by "routine" PCRs. Some other studies do not show that HCV replication - and situation seems not well studied. Hence, in my understanding, "full clearing of body from HCV after successful treatment" is a hypothesis, it is not a "scientific fact"... Possibly (just as a guess), "total clearing of body from HCV" may be a Big Pharma's "marketing slogan", designed for promoting treatment.

[dragonslayer]

Sergey,   this study is disconcerting to say the least.  I notice that the study was done around 2004, and I havent read any corroborating studies.  I dont have the background to evaluate the details of the study, but isnt it possible that because its a relatively old study, the conclusions drawn may not apply to today's DAA treatments? Isnt it possible that current testing would be sensitive enough to detect presence and replication?  We've always read that the virus replicates rapidly, and if it doesnt do so, it dies out, and this is supported by many more studies, and is the position held by not just big pharma, but by scientists world-wide.   In addition, this study's sample size  was tiny.   

In looking for something to be optimistic about here beside the fact that its an old study, at least we have this:

"it should be stated that 15 patients had continued liver necroinflammation, and 1 patient had liver fibrosis; however, there was an overall improvement in histological damage. So, it is difficult to know whether persistence of HCV infection and replication has a clinical relevance until more data become available."

Why hasn't 'more data' become available in the subsequent 12 years since this study to support it? 

If true, would it mean HCV SVR patients are still infective?

Im just looking for reasons to doubt the study's conclusions and their applicability to today's infections.  The alternative is rather unthinkable. 

[KimInTheForest]

I must admit I have always wondered why, with the earlier IFN/riba treatments, people would appear to clear (be cured), only to relapse many months (or a year) later. Whereas, with the new DAA treatments, SVR12 is considered cured, and indeed SVR24 and SVR-1-yr seem to support SVR12 being a genuine cure - meaning total elimination of virus from body.

We have been TOLD that because of HCV's rapid replication rate, and because HCV does not have a 'dormant' non-replicating state the way HCB and HIV do (correct?), that if there is no virus present 12 weeks post-tx, then there can be no virus left in body. Yet why didn't this also pertain to IFN/riba tx of earlier years? HCV's status as a fast and constant replicator has presumably always been the case, regardless of treatment method.

So I too have wondered how much of this "total clearance of HCV from body" is a marketing slogan for the popular and lucrative new drugs. Not trying to be overly cynical here. It has just always seemed to me like a non-sequitur that SVR12 is a "complete virological cure" with the DAAs but not with the older treatments.

kim

[andrew j]

The mechanism is quite different, of course.

Just a quick note: Lynn,

You seem happy enough with your results - or at least - accepting of them?
(Ha!) ...

It's a pity there isn't significant improvement in areas that you would've liked to see improvement in - but then, as you say - there isn't deterioration where you wouldn't want it, either.

That stabilising thing can be quite good 'going forward', eh?

[Lynn K]

Well was hoping to be among those with cirrhosis who improve in liver function over time but I guess at least for now it doesn't look like I am one of the lucky ones. I guess the status quo will have to do. So as long as I don't develop liver cancer I hope I will continue to be ok. Was just hoping to get rid of the edema so I can quit taking the diuretic that I have been taking for 8 years and of course for my platelet count to get back to above minimum normal of 150. Guess I will see what the coming years bring.

Happy New Year everybody

[andrew j]

Sheesh.

Happy New Year to you, too -
and we'll just keep hoping and praying for improvement, eh?

[dragonslayer]

I must admit I have always wondered why, with the earlier IFN/riba treatments, people would appear to clear (be cured), only to relapse many months (or a year) later. Whereas, with the new DAA treatments, SVR12 is considered cured, and indeed SVR24 and SVR-1-yr seem to support SVR12 being a genuine cure - meaning total elimination of virus from body.

We have been TOLD that because of HCV's rapid replication rate, and because HCV does not have a 'dormant' non-replicating state the way HCB and HIV do (correct?), that if there is no virus present 12 weeks post-tx, then there can be no virus left in body. Yet why didn't this also pertain to IFN/riba tx of earlier years? HCV's status as a fast and constant replicator has presumably always been the case, regardless of treatment method.

So I too have wondered how much of this "total clearance of HCV from body" is a marketing slogan for the popular and lucrative new drugs. Not trying to be overly cynical here. It has just always seemed to me like a non-sequitur that SVR12 is a "complete virological cure" with the DAAs but not with the older treatments.

kim

If this whole notion of SVR being considered a 'cure' were just a marketing sham, wouldnt we have heard about  through the AASLD or EASL or somewhere?  I believe this is one isolated study from back in 2004 based on a tiny sample and the conclusions reached were based on the facts in evidence at the time of the study...  That was 12+ years ago which, in this field, was almost ancient history, so relatively rapid have the advances been.

If the conclusions reached were true, ie, that the virus is hiding out in cells outside the liver, waiting to strike,  wouldnt that effect our infectivity?  And if so, wouldnt we know about it?  For these conclusions to be true, virtually everything weve learned about HCV, the way the drugs work, the length of time needed, etc, would be thrown into question, as would the very meaning of SVR.. 

I have a hard time believing this could have escaped detection and exposure in all this time.

[KimInTheForest]

If this whole notion of SVR being considered a 'cure' were just a marketing sham, wouldnt we have heard about  through the AASLD or EASL or somewhere?  I believe this is one isolated study from back in 2004 based on a tiny sample and the conclusions reached were based on the facts in evidence at the time of the study...  That was 12+ years ago which, in this field, was almost ancient history, so relatively rapid have the advances been.

If the conclusions reached were true, ie, that the virus is hiding out in cells outside the liver, waiting to strike,  wouldnt that effect our infectivity?  And if so, wouldnt we know about it?  For these conclusions to be true, virtually everything weve learned about HCV, the way the drugs work, the length of time needed, etc, would be thrown into question, as would the very meaning of SVR.. 

I have a hard time believing this could have escaped detection and exposure in all this time.

So what do you think the reason is for SVR12 being virological cure for DAA treatment, but not for earlier IFN/riba treatment? If gone is gone, then regardless of mechanism by which virus is eliminated (as Andrew pointed out, mechanism differs for the 2 types of treatment), SVR12 should be virological cure for both. Or neither. That is, if we accept the view that HCV can only exist in a rapidly replicating state.

[dragonslayer]

So what do you think the reason is for SVR12 being virological cure for DAA treatment, but not for earlier IFN/riba treatment? If gone is gone, then regardless of mechanism by which virus is eliminated (as Andrew pointed out, mechanism differs for the 2 types of treatment), SVR12 should be virological cure for both. Or neither. That is, if we accept the view that HCV can only exist in a rapidly replicating state.

I cant explain that..  Perhaps SVR was interpreted differently in 2004.. Perhaps the method by which Interferon worked allowed for such conclusions to be reached such as those in this tiny study.    I dont think SVR was considered a 'cure' back then like it is now. I really dont know.. But common sense tells me that for Big Pharma to have perpetrated a big scam on us, it would have required the complicity of virtually all the professionals and researchers in the field...  Does that seem logical to you?

If you believe its a sham, then do you believe you are still infective?  Do you expect  an HCV reactivation in the future?   For this conclusion to be true, it would mean we've all been lied to, not just by  Big Pharma, but by virtually every professional in the field..   Why isnt this part of the universe of general knowledge today regarding HCV?  Why dont we have modern studies confirming the conclusions reached?  Is it possible they knew something in 2004 that didnt make it into the modern day lexicon?

[elias]

I have often wondered about all this and been haunted by it. Which is why asked elsewhere on Forum where virus exists after undetected result during DAA treatment

Here's a more recent survey of the issues and findings involved:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4523271/

It's fairly long write-up and I found it a bit difficult to follow. But here is authors' conclusion:

Thus, the bulk of evidence suggests that HCV can be cleared not only from plasma, but also from tissue and that PBMCs are an unlikely source of residual replicating virus. The disparity between finding HCV RNA in the PBMCs of the vast majority of recovered subjects (7, 8, 19) and not finding HCV RNA in any subjects in this study and others (16, 17, 22, 23) cannot be fully explained at this time. Nonetheless, we feel the data presented herein strongly support the concept of absolute HCV clearance in most patients with spontaneous or treatment-induced recovery. Further, this study demonstrates that the finding of HCV RNA in the PBMCs of chronically infected patients does not necessarily imply replication within PBMCs. Rather, our data suggest that PBMCs are passive carriers of HCV that is derived from other replication sites, predominantly, if not exclusively, the liver. These findings and the general absence of documented HCV reactivation in presumed recovered subjects provide support for the concept of “curing” HCV infection. Nonetheless, our study is not sufficiently large to exclude the possibility that a minority of patients who are classified as “recovered” by standard criteria may still harbor small amounts of virus for a limited time as documented by Veerapu, et al (24). While, in any given patient, documentation of viral eradication will require serial testing over time, presumed recovered patients can be reassured that the reproducible loss of detectable HCV RNA in plasma generally denotes viral eradication and that any low-level residual virus can probably be contained by their reinvigorated cellular immune response to HCV that is no longer stunted by an overwhelming viral load.

[dragonslayer]

Elias, interesting study.    The one section Im hanging my hat on was in this conclusion reached:

"Conclusion: 1) HCV RNA was detected in PBMCs of most chronic HCV carriers and was predominant in the B cell subpopulation; 2) HCV detected in PBMCs was in a non-replicative form; 3) HCV passively adsorbed to PBMCs of healthy controls in vitro becoming indistinguishable from PBMCs of chronic HCV carriers; 4) Residual HCV was not detected in the plasma or PBMCs of any spontaneous or treatment recovered subjects or in chimpanzee liver suggesting that the classic pattern of recovery from HCV infection is generally equivalent to viral eradication."

I tested 'detected' at EOT.. I also tested 'detected' at 8 wks post..  I didnt reach 'Undetectable' until 12 wks post where Ive been ever since, going on 2 years now... What could be the explanation for this?  Fragmented virions, not replicating and not causing damage perhaps?   Frankly, if HCV is found in PBMCs but are not causing harm, do I care?  I could think of worse thinks that could be attacking me.

I really dont know how else to come to grips with this.

[Mugwump]

Seeing that only certain types of cells are suspected to harbor and possibly have the capacity to allow the replication of HCV, more study of exactly how the disease replicates and can spread is prudent.

For instance studies could also explain if mucosa cells can be a vector for the transmission of the disease. If common mucosa cells do have the capacity for HCV replication this would also explain why some types of sexual activity are know to more easily transmit HCV. 

Here is hoping that HCV has no long term dormant capacity or long incubation characteristics and that HCV can eventually be completely eradicated the way we have with other virus.

It seems that studying the immunological differences between those who naturally clear the virus and those who go on to develop chronic infection is a good place to start. Unfortunately there seems to be no movement to undertake studies into how some people clear this virus naturally or more detailed studies being done about transmission of the disease.

Again why some of us develop EHM more readily also needs more careful examination and could be one of the keys to how the disease can be more destructive in certain segments of the population. Whereas a great many seem go on to have little to no long term effects but still remain carriers of HCV.

[elias]

I tested 'detected' at EOT.. I also tested 'detected' at 8 wks post..  I didnt reach 'Undetectable' until 12 wks post where Ive been ever since, going on 2 years now... What could be the explanation for this?  Fragmented virions, not replicating and not causing damage perhaps?   Frankly, if HCV is found in PBMCs but are not causing harm, do I care?

Hi Dragonslayer:

Was actually thinking of your situation at EOT while reading some of this. There were two explanations invoked for SVR after "detected" at EOT. Such as happened with you. One was "fragmented viral particles" as you mention above. The other was that the host's immune system kicks in and finishes the job after treatment is done. In what I've been reading today concerning "occult HCV" both those explanations were somehow invoked to explain it.

Another point:

I recall that some of the clinical trial for the newer drugs do continue very much longer follow-ups after SVR? Mostly on status of the liver. But I imagine they'd run  (standard) viral load testing as well? So, if this is true, by now they'd have data on relapses over an almost 48 month duration...

[andrew j]

Longer, even.

I think sofosbuvir was being trialed as far back as 2010 / 2011.

[elias]

But are they in fact monitoring a cohort of those and checking viral loads in addition to other parameters. Or are they going with assumption that SVR12 or SVR24 is absolute eradication and not checking those?

[andrew j]

Not sure.
I think the follow-up testing was reasonably comprehensive, though.

[elias]

The conclusion to date in this group of studies is that the levels of some forms of HCV antibodies reduce more quickly post treatment but the core HCV antigen takes longer to dissipate

Hi Eric:

Much of this is a bit over my head, but here's a few questions and simplified ideas. Let me know if I'm off-base on this

--Extra-hepatic manifestations  perhaps do not require that the HCV actually be in the extra-hepatic sites or replicate there. It is the circulating antibodies to the HCV that are wreaking the havoc. So even when HCV is totally cleared, they're still acting or over-reacting? Also, might damage to liver itself be causing these, since the liver is involved in so many metabolic processes. Might help clarify some of this by looking if similar extra-hepatic manifestations occur with non-infectious types of fibrosis/cirrhosis as well

--Clearing HCV is not merely the action of the antivirals and how they mesh with GT, RAV's , the molecular structures of the envelope, etc. etc.  It's probably more than just some "magic bullet" pill doing all that wonder.  It likely involves the host immune system as a whole. Which might explain why some who still have HCV at EOT go on to clear it weeks later. Isn't this often invoked with antibiotics? That after most of the infection is knocked off by the antibiotic, the immune system takes care of the rest.

--Definitely makes sense to  look into how the immune system interacts with HCV ,  during chronic infection, during clearance, and during the post-clearance phase.

We do accept the notion that some illnesses brought on by infections continue even after the infection is long gone. So yeah, it's often the immune system acting out

[Mugwump]

Elias, interesting study.    The one section Im hanging my hat on was in this conclusion reached:

"Conclusion: 1) HCV RNA was detected in PBMCs of most chronic HCV carriers and was predominant in the B cell subpopulation; 2) HCV detected in PBMCs was in a non-replicative form; 3) HCV passively adsorbed to PBMCs of healthy controls in vitro becoming indistinguishable from PBMCs of chronic HCV carriers; 4) Residual HCV was not detected in the plasma or PBMCs of any spontaneous or treatment recovered subjects or in chimpanzee liver suggesting that the classic pattern of recovery from HCV infection is generally equivalent to viral eradication."

I tested 'detected' at EOT.. I also tested 'detected' at 8 wks post..  I didnt reach 'Undetectable' until 12 wks post where Ive been ever since, going on 2 years now... What could be the explanation for this?  Fragmented virions, not replicating and not causing damage perhaps?   Frankly, if HCV is found in PBMCs but are not causing harm, do I care?  I could think of worse thinks that could be attacking me.

I really dont know how else to come to grips with this.

Dragon I read that you were on an eight week TX. So is it not entirely possible that some who are on shorter duration 8 and 12 week TX might also take longer to completely clear the virus? And this is why the recommendation for a short duration TX is considered only for those who have little to no liver damage or at the discretion of specialist whether or not the patient has had long term symptoms that would equate to a disease weekend immune system?

My supposition here is that you were right on the cusp of being one of the individuals who can clear with a shorter duration TX as others on 12 weeks of TX have also had a positive EOT result and then gone on to clear the virus.

Just maybe you are one lucky customer to have gone on to clear with a shorter TX.

I was still detected at 4 weeks and have no idea when I actually cleared the virus because I did not have another test until the 24 week point at EOT. So I might very well have cleared with only 12 weeks of TX, but I am sure as hell glad that I did not take that risk or worse have my TX duration shortened by some pencil necks in an office!

Cheers
Eric

[andrew j]

For sure.
.....................
16 weeks is an interesting tx duration.
That was routinely being prescribed in Australia for potentially difficult-to-treat patients.
... But then, the Australian Govt. somehow managed to secure a super-good deal with Gilead.
Patients have to pay - I think it's $5 a bottle - or maybe it's $5 for the whole prescription!

[dragonslayer]

Dragon I read that you were on an eight week TX. So is it not entirely possible that some who are on shorter duration 8 and 12 week TX might also take longer to completely clear the virus? And this is why the recommendation for a short duration TX is considered only for those who have little to no liver damage or at the discretion of specialist whether or not the patient has had long term symptoms that would equate to a disease weekend immune system?

My supposition here is that you were right on the cusp of being one of the individuals who can clear with a shorter duration TX as others on 12 weeks of TX have also had a positive EOT result and then gone on to clear the virus.

Just maybe you are one lucky customer to have gone on to clear with a shorter TX.

I was still detected at 4 weeks and have no idea when I actually cleared the virus because I did not have another test until the 24 week point at EOT. So I might very well have cleared with only 12 weeks of TX, but I am sure as hell glad that I did not take that risk or worse have my TX duration shortened by some pencil necks in an office!

Cheers
Eric

Hi Eric,  I agree.   And Im not sure those 8 wk preconditions should continue to receive the 8 wks instead of 12 wk treatments. I fit right into the 8 wk profile, ie, treatment naive, stage 0-1 liver damage, viral load of 2.4 mil.   There are some that clear early in treatment but go on to become detected by 12 wks post, and there are some that are detected at eot yet go on to clear by 12 wks post.    Therefore not sure how much treatment duration has  to do with final outcomes in all cases.   I never really understood how Gilead's proviso that doctors must use 'caution' in prescribing the shorter duration should be interpreted... What is Caution?   Beyond the conditions for shorter treatments, are doctors supposed to have the necessary data on which to decide this shorter option?  What would the average doctor bring to the table in making this decision that the researchers at Gilead havent already considered...  It sounds like a Gilead 'hedge'..   Why wouldnt they say absolutely, for   these conditions, use 8 wks, and for those conditions, use 12, and for other conditions, use 24.....   I think putting the onus on the doctor in this case to make that duration decision when the doctor couldnt possibly have all the data the Big Pharma companies do, is a bit of a cop out, potentially, to the patient's detriment.

[Lynn K]

My thought is that your doctor always should have the final decision along with the patient about treatment options.

All the prescribing information sheet does is provide recommendations.

Neither one of my last two treatments were per the prescribing information. I did 12 weeks of sovaldi and olysio which was off label usage. Then after I relapsed I did 24 weeks of Harvoni but after discussion with my doctor we decided later to add ribavirin for my remaining 15 weeks. But 24 weeks of Harvoni with 24 weeks of ribavirin (had we gone that way initially) is not per anyone's protocol.

[Gaj]

Hi Elias,

You said:

"It likely involves the host immune system as a whole."

The problem with HCV is that it replicates at such a high rate that our immune system isn't able to keep up and remove it from our bodies fast enough to 'cure' us so we end up with a 'chronic' infection where our immune system fights a daily battle that it can't win on its own. The inflammation in our livers that leads to fibrosis is a direst result of that daily battle. Because viruses are unaffected by things like antibiotics, etc. our immune system is the key and even the horrible old interferon regimes were basically just a way of artificially boosting our immune system in an attempt to even up the fight.

The various new DAAs such as Harvoni, Epclusa, etc don't directly kill the virus, their main task is to prevent it replicating. Because replication isn't happening (or at least is reduced to very low levels) we see a rapid reduction in levels of viral RNA in serum (blood) but the virus will still be present in body tissue and we are reliant on our immune system's natural ability to mop up those remaining virions. In most (~95%) cases it is able to do that because it is no longer being overwhelmed by massive replication rates.

The strength of the individual patient's immune response possibly partly explains what we see in situations like dragonslayers where they don't become undetected until some time after EOT. That is, their immune response takes a bit longer than most to clear out the last few remaining virions or RNA particles.

[Gaj]

Treatment length data is limited because clinical trials haven't been done for many of the intermediate lengths like 9 or 14 or 18 weeks. So mostly we have 8, 12 and 24 weeks data to back the recommendations. The general trend for most patient groups is 'longer gives higher SVR' but longer is also $$$ and there is also the preference not to overmedicate.

You could argue that more trials should have been done to define this data but personally, (and I'm sure for the majority of members here) I don't want to be told "Well, we have discovered these wonderful new cures but we are still trialling them to see if we should give you 23 or 24 weeks treatment so come back and see us in 10 or 20 years when we have completed them". I suspect that as more data from real world use becomes available we will see more graduations in recommended length of treatment and indeed in the case of GT3 like myself the data is starting to show a trend that we may require longer treatment than other genotypes to achieve the same SVR rates.

But in the real world where $ are limited and we don't want to overmedicate it is currently more cost effective and probably better for the majority of patients to treat for a minimum period of say 12 weeks that gives good results (~93%) for the majority of patients and then go back and mop up the relapses with longer and stronger second or third treatment than it is to treat all patients for 24 weeks to achieve the same overall results. The first method results in costs that are only about 60% of the second so allows insurers, govt, etc to treat more patients within a limited budget. Not ideal but with the huge costs imposed probably the best we'll get for now.

[Gaj]

Hi Andrew,

Costs in Australia are a bit higher than you quote at A$38 (US$27) 'per script' although those on welfare do get it for A$6.
Per script means per bottle (month) for a single tablet combination like Harvoni but for something like Sovaldi + Daclatasvir you would pay separately for each so a total of $76 per month.
Still not too bad overall and while I don't have latest figures it was estimated that 12% of our total HCV positive population commenced treatment in the first 5 months of availability.

[andrew j]

Thanks, Gaj.

Yes - I wondered if it was something like that.
(... Crippling, isn't it?!) ...
I always notice minimum cost!

It's $5 here in N.Z. (per refill, I think) - but the only meds available are V/Pak (for GT 1s) - and Harvoni - for those with advanced liver disease.
(... Oh - and RIBA, of course).

An acquaintance in Perth started tx on the first day that meds were available funded in Aust. (March 1st, was it?) - but I imagine that many, many others started that day, too!

[Gaj]

Hi Andrew,

Yes, 1st March 2016. The gov't was able to negotiate a volume deal that means only restriction they've applied is 18 years or older. Currently the following meds are available:

Sovaldi
Harvoni
Daklinza
V/Pak
Zepatier
Riba

So a good range of choices although Epclusa hasn't been approved yet.

[andrew j]

Amazing!

[Mugwump]

Here in Canada we do not have a national drug policy so we are at the mercy of Gilead the same as in the US. I was very fortunate to have American style drug insurance and was covered quickly only because of the advanced state of my cirrhosis. Although it might have actually been cheaper in the long run for BC to bury me the way they will many if things don't change soon.

The bean counters in BC are still doing their dirty work so: A great many here are much less fortunate than I was regarding obtaining treatment. It is currently estimated that there are a possible 70 thousand cases of HCV in British Columbia and if you do the math this equates to close to 9 billion in drug costs alone, never mind the secondary costs.

So our provincial government in their infinite wisdom and with a current budget surplus of only 1.9 billion has opted this year to only help those affected by over valued real-estate market instead. Which turns out to be a much cheaper alternative to things like curing more of the victims of HCV

http://globalnews.ca/news/2943308/real-estate-sales-help-lift-bc-budget/

Typical but not unexpected considering they are essentially just pandering to the bulk of the population in Greater Vancouver to get re-elected.

I hope this news comes back to bite them in the arse when the truth about how much not treating HCV is going to cost us all in the long run.

http://www.cbc.ca/news/canada/british-columbia/woman-denied-hep-c-cure-pharmaceutical-company-profits-soar-1.3922785

You guys in Australia and NZ are lucky because you saw the possibility of hanging generics over the head of Gilead, we here are cowards who mostly pander to the current US policies. As our current PM's father Pierre Trudeau once said; "Living next to the United States is like sleeping next to an elephant: you just hope it does not decide to roll over!"

Cheers
Eric

[Sergey]

Eric, may people from Canada, in worst case scenario, in cases of denying treatment, fly to other countries with less restrictions and undergo generic treatment in these other countries?

[Gaj]

Hi Eric,

My treatment attempt commencing in Nov 2015 was with generics from a prescription provided by my very supportive and forward looking specialist as Australians didn't have access at that time (other than paying full US price which would have been US$295k for the initial 6 months Sof/Dac/riba in my case). While I didn't SVR the reduction in inflammation of my liver has probably prevented a rapidly escalating sequence of events that didn't look good when I commenced 14 months ago and has also considerably reduced EHMs that I was dealing with. I'm in far better health now to commence a retreatment soon. 

I suspect that the situation in Australia was also assisted by a concerted effort by all our advocacy groups and medicos whether mainstream or not calling for treatment for everyone and there was some tough negotiating to achieve that end by our government. In return the combined pharma industry got a bulk deal covering the whole country for a suitably discounted price.

PS In response to Sergey's question, Canadians who participate in registered clinical trials such as Redemption are able to receive shipments of generic medications without needing to travel.  https://forums.hepmag.com/index.php?topic=4014.msg42015#msg42015

[Mugwump]

Eric, may people from Canada, in worst case scenario, in cases of denying treatment, fly to other countries with less restrictions and undergo generic treatment in these other countries?

Some can take that route but the numbers who cannot possibly afford to go off shore for treatment are huge. What we fail to take into consideration is that HCV over the long term does cause a lower quality of life for very many and therefore decreases the earning potential of many who are infected. I know if I had not had a wonderful wife and family that supported me during my infection I would have become indigent.

The actual cost of producing the drugs is minor, the cost of supporting the money grubbing drug companies is the real problem. If you extrapolate how many could be cured of this disease world wide and how much money they are looking to make out of Sofir's chemical wizardry then you understand why this situation needs to change.

Much like the banks and financial institutions prior to 2008 taking the system for a ride and then causing  unregulated financial chaos that required a government bailout, the drug companies are going to cause financial chaos in the health care sector if not somehow brought to task for their greed.

India threw a monkey wrench in the works for them but in Canada we pander to the interests of corporations the same as the US. We caved in on the issue of generic drugs. What will be interesting is to see how the Russians and Chinese wind up dealing with the juggernaut Gilead especially with the current crop of politicos in the US. 

[Sergey]

Eric, maybe, Redemption trials, mentioned by Gaj, are appropriate alternatives for access to generics for people in Canada? I guess, countries like China and Russia are not top priority for Gilead, because it is unlikely that insurance companies of these countries will pay huge money to Gilead... China just rejected Gilead's patents. Accessibility of generics in Russia is not bad now, but it may become complicated at any moment in future. Full blocking of access to generics in Russia seems unlikely, just because Russia have "transparent" borders with some other countries, which also have access to generics.

[Mugwump]

Finally got to see my GP today for an annual complete physical. HURRAH!!

Best news is that the slight cirrhosis caused portal hypertension I was developing pre treatment is gone! My resting heart rate, BP, PSA levels are about normal for an overweight 64 year old. It is almost like I did not have cirrhosis. I had my PSA checked because there is a major history of prostate cancer in my family on both sides. I do have the male curse BPH to a marginal extent but no sign whatsoever of the usual nasty renal issues, type two diabetes (which is also very common on my fathers side of the family) or any of the other common curses. 

There were times that I know that HCV attacked me heavily especially in 2010-2013 when it progressed to cirrhosis. During those years I was incapable of doing much work, was taking myself of the road frequently because prolonged periods of worsening brain fog and found that I was beginning to not remember even simple things short term. Worse part of those years was becoming long term depressed about living with HCV. I snapped at my wife over small things and at times alienated others by being a depressing grouch of the first order.

I could have run for political office as a republican if I was in the states!

Now to work seriously on the pork factors knowing that I am not likely to blow a gasket in the doing.

I really feel bad for those who continue to suffer badly post treatment and hope we can eventually all see as wonderful an outcome as I have by removing HCV from the equation.

It took well over a year get here but it is possible to overcome much of what HCV caused cirrhosis and the EHM of what the antibodies created by long term HCV infection can do. Even the level of hypertensive tinnitus is backing down.

Here is to a great 2017 for all of us grouchy heppers!
Eric

[Sergey]

Eric, congratulations! Hope you will be fine and enjoying good health!

[elias]

Great news, Eric!!

I try to keep up with any lifestyle recommendations to help recover from HCV once the infection clears. So I do pay close attention to your reports and experiences.

Would be helpful if there were a : "Liver Health" section on this forum. Since such discussions are scattered under different topics here and often hard to find

You do have a wonderful writing style. Especially when trying to explain some of the more abstruse ideas

[Sergey]

Eric, regarding to issue of extrahepatic manifestations, I feel that it is quite complex and not well studied... There are many different situations - various treatment regimens, different mutations of virus, different overall health of HCV-infected people, various treatment responses and treatment history, possibility of residual low-level replication of virus after successful treatment, not well studied role of HCV antibodies and role of changes in immune system due to HCV infection and due to treatment... Some extrahepatic manifestations may disappear after successful HCV treatment and some may not disappear...Difficult questions. It may be unlikely that Big Pharma will invest big money into deep investigation of such things, because it is unlikely to have big profit from such studies for them... We can choose - to treat HCV or to wait, and have a deal with possible extrahepatic manifestations of HCV and/or with possible consequences of treatment...

For me, it was important recent understanding that for many extrahepatic manifestations it is just hypothesis that HCV may cause them, not proven fact. Reported association between HCV and some diseases does not necessarily mean causative relation, because it may be other causes for such diseases/disorders. Such understanding eliminated many unnecessary fears in my case. Of course, some extrahepatic manifestations of HCV (for example, like serious cryoglobulinemic vasculitis with symptomatic damaging of kidneys, with increased creatinin in blood etc.) are real and look like proven fact, but such situations may seem relatively rare. I know only two cases of serious symptomatic cryoglobulinemic vasculitis with damaging of kidneys, they were greatly improved after successful interferon-based HCV treatment.

Also, just as a guess, I am a bit suspicious that Big Pharma may use issue of extrahepatic manifestations for marketing purposes, using some degree of "disease mongering" strategy. Wikipedia says that such practices (among others) may be used for "desease mongering":

-Defining a disease such that a large number of people have it
-Associating a disease with a public relations spin campaign
-Directing the framing of public discussion of a disease
-Intentionally misusing statistics to exaggerate treatment benefits
-Setting a dubious clinical endpoint in research
-Advertising a treatment as without side effect
-Advertising a common symptom as a serious disease

It may be easy to convince majority of non-cirrhotic HCV infected people that they are very sick, using conception of "extrahepatic manifestations". If desired, almost every negative health condition or disorder may be represented as "extrahepatic manifestation of HCV", despite lacking of good evidence about it. For example, if somebody will broke his hand, or will have pneumonia - his problems may be represented as "results of HCV infection". As a result, all existence of majority of HCV-infected people may be "pathologized", they may start to  continuously worrying about "inevitable extrahepatic manifestations"... Personally, I feel that it may be helpful to be aware about real level of evidence about extrahepatic manifestations, for overcoming such possible psychological problems.
 
With warm wishes,
Sergey

P.S. Article from BMJ, about disease mongering and "motivational deficiency disorder" (probably it was First April joke) - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1420696/

[dragonslayer]

Eric, Sergey, et al.

I find this whole thread to be one of the most fascinating conversations Ive read on this forum.  Really high quality stuff pointing to loads of questions, but few answers.  Hopefully in not too many years, we'll get to the bottom of all this.

As for 'motivational deficiency disorder', is this what they used to call 'failure to thrive syndrome' or even common laziness?  Sounds like a new take on simple depression, but as for neurological basis, sounds like a stretch, or 'disease mongering' of the first order.

[andrew j]

Illness has a depressing effect - psychologically as well as physically (whether or not a person is symptomatic).

[Also] - many people seem to be convalescing after Tx.
... That's an old-fashioned word that means 'recovering from illness and / or treatment'.

[dragonslayer]

Illness has a depressing effect - psychologically as well as physically (whether or not a person is symptomatic).

[Also] - many people seem to be convalescing after Tx.
... That's an old-fashioned word that means 'recovering from illness and / or treatment'.

Fine.  Granted... But does the syndrome require a whole new disease name?  What youre describing is different than 'Motivational Deficiency Disorder', the need for which seems highly in doubt.

[Mugwump]

Sergey I hope that the best researchers at Universities that are not as heavily influenced by the pharmaceutical industry keep working on HCV even though it can now be cured. With the inexplicable high incidence of HCV in places like Egypt there is little chance that the current overpriced solutions to HCV infection are going to make much of a difference.

Even in places like Pakistan there are good scientists at work on major diseases and not just working on things like nukes. Even though the stock of the nuke production industry just went up in both Russia and the US, maybe China will develop a wonder pill to protect their soldiers from more than just the effects on the thyroid when attacking after using nukes

I am not counting on the answers to these questions coming from just the US or Canada.

It is safe to say that HCV can cause what seems to be completely unrelated antibody reactions. For instance the mechanisms of why much higher than normal levels of HCV infected individuals have persistent elevated levels of antithyroid proteins that go on to cause hormone regulation problems is not at all understood. But the study of this one aspect could uncover much about how HCV tricks the human immune system over the course of infection.

Now that I am free of HCV it would be very interesting to see if my levels of antithyroid hormone have dropped. It was persistent elevated levels of antithyroid hormone for no reason that lead to a diagnosis of Graves disease in 1989. I even had one scan that showed nodules in my thyroid gland. Before I had my thyroid irradiated it was starting to become quite fibrous from sustained antithyroid damage.

One of the major signs of HCV infection is inexplicable ongoing fatigue and flu like symptoms. This fatigue is very hard to nail down as to cause, but seems very closely related to what antibodies created to fight other disease like the flu are known to do. It is well understood that HCV victims can present with persistent flu like symptoms but no signs whatsoever of liver damage or abnormal elevated liver enzymes.

The GI that treated me explained this to me and in his experience claimed that individuals with slow progressing HCV are at a much greater risk of having HCV suddenly attack if they are exposed and contract other disease like severe colds and flu. He is the most experienced infectious disease specialist we have where I live.

I took the opposite road some take during my infection and did not lock myself up worrying about every little ache and pain or incidence of cold and flu. But a great many who have chronic HCV lock themselves up because of fear of other diseases causing them to go on to ESLD prematurely.  We can become obsessive hand washers, what one might call over stimulated worry warts and even full blown hypochondriacs. Either that or refuse to talk to others about our infection.

Having know someone who took his life and left both grieving wife and young child behind because of this disease, I cannot say that this is a disease that creates few serious problems for many. As the bean counters in the health care for profit industry would lead us to believe.

I guess I am not completely over being a curmudgeon at times

Cheers
Eric





 

[andrew j]

Dragon,

I think we are talking about a number of different things now (as somebody? above says).

[Gaj]

Eric, so pleased to hear the news of such good results from your annual checkup particularly that your portal hypertension seems to have resolved. I'm sure that with your resolve and determination even your pork factors will abate with time. (I know someone of the medical persuasion who I'm sure would prescribe as much wading and casting as possible for that so you can tell your wife that you are "just following the doctor's orders." )

I'd also like to add my thanks to dragonslayer's for your contributions to this thread. Lots of good information and questions about future directions to ponder and your honest and revealing commentary on the impact of HCV on your health and emotions prior to treatment provide a useful insight into the impact of this disease that I'm sure others will recognise in themselves or their loved ones.

[Gaj]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1420696/

Just wanted to note that Motivational Deficiency Disorder and Laziness are two totally different ailments, I should know as I suffer from both!

.....but it is always good to read such a well written paper by that well known Australian research neurologist Leth Argos on 1st April. It's just a shame that he's written so few since he was struck down by LethArgy.     


On a more serious note, both fatigue and depression are well documented impacts of HCV and I often wonder how much of the latter is a result of not only being unwell but also our reluctance to share the information that we have this virus with those around us due to the stigma associated with it.

[Lynn K]

Hi Eric
Great news on your checkup congrats!

Just a quick question you said "Best news is that the slight cirrhosis caused portal hypertension I was developing pre treatment is gone!"

How were you diagnosed with portal hypertension and how did they determine yours is gone?

I was diagnosed with portal hypertension because I have symptoms from it my esophageal varicies and small amount of ascities. I haven't had a reoccurrence of the varicies since they were banded back in 2012 but I still have a small amount of ascities even though I was cured almost 2 years ago.

I found this on WebMd

How to diagnose portal hypertension?
Usually, doctors make the diagnosis of portal hypertension based on the presence of ascites or of dilated veins or varicies as seen during a physical exam of the abdomen or the anus. Various lab tests, X-ray tests, and endoscopic exams may also be used.

Low platelet count can also be a symptom.

I thought you never had any of those symptoms?

[Sergey]

Having know someone who took his life

If not a secret, what was the reason for such his decision? Did he had untreatable metastatic HCC with unbearable pain or something like that?

[Mugwump]

If not a secret, what was the reason for such his decision? Did he had untreatable metastatic HCC with unbearable pain or something like that?

Sergey;
None of the above it was simply the fear of spreading the disease and the fact that his business failed because he was distracted by having the disease. He became paranoid of everything and everyone around him.

Lynn;
The reading on my ultrasounds from 2010-2014 showed progressive dangerous swelling and pressure on my portal vein. My platelets did drop down to below 100 before treatment but recovered slowly during treatment. My current platelet levels are still in the low normal range. My bilirubin slowly crept up over the normal level for 4 years and then was all over the place then very slowly normalized for over a year after treatment. So my progression to cirrhosis was slow indeed but because my doctor stayed on top of having the exams done the cirrhosis was caught early on. How long before it may have progressed to ascites or bleeds is anyones guess. I would rather not find out

Remember that super silly episode of CSI Los Vegas where the guy with HCV would blow his nose and splatter blood all over the place? I ACTUALLY fell for that bullshit and tried to nose blast once when I had a bloody nose. So I am really glad that my level of cirrhosis never became so dire that things started to leak.

My biopsy in 2004 was confirmed pre cirrhotic F2-F3 so I had regular yearly ultrasounds focused on the liver functions, bile duct and the blood circulation to the spleen. After 2010 when things started to go south I had ultrasounds, CBC, enzymes done every six months. I am still on a semi anual standing order for CBC and enzymes. Thank heavens at least these costs are covered by our MSP.

.......

About the effects of long term brain fog, when I discussed this aspect with my doctor and called it hepatic encephalopathy he laughed and said what I had was nothing. I am really glad that losing my mental clarity and ability to focus was the only thing I went through during the years of having advancing cirrhosis. We call it brain fog the but our doctors by and large wait until someone has an accident behind the wheel before doing something like revoking a patient's driving license. Out here in Lotus Land if you take the drivers license away from someone over 50 you can cause as much of stink as what happens in Florida except we don't by and large carry guns. So doctors are hesitant to pull the trigger until the police are brought into the equation. But I know that I was becoming a real road hazard at times because of brain fog!

The best description that I can give of my brain fog was that it was like being constantly drunk or having a drink to get over a hangover. Because this aspect of low level cirrhosis is exactly the same chemistry that goes on by having huge numbers of liver cells dying all the time. HCV was indeed a real creeper for me it slowly robbed be of my ability to do a great deal for very many years.

The real eye opener was how clear my thinking suddenly became during treatment and realizing exactly how the abnormal chemistry of HCV caused cirrhosis was effecting every aspect of my quality of life.

I still believe that early effective treatment of this disease is a best answer for all of us now that it can be cured.

Eric

   

[Lynn K]

Totally agree the best if found early especially now that we have effective treatment.

I was having biopsies every 5 years went from F1 to F2 to F3 and finally F4 in Jan 2008. I was having ultrasounds every year until I was diagnosed with F4 cirrhosis since then I have them every 6 months plus I had an upper endoscopy as soon as I was diagnosed with cirrhosis. My ultrasounds show normal blood flow so the portal hypertension has not got to  to the point of blood flow reversal. My ultrasounds make no mention of portal hypertension. As I said my portal hypertension was diagnosed based on having symptoms.

Happy for you that you are backing away from the precipice. My platelets are still low at 107 but slightly improved from my 90 before treatment.

[Gaj]

"The real eye opener was how clear my thinking suddenly became during treatment and realizing exactly how the abnormal chemistry of HCV caused cirrhosis was effecting every aspect of my quality of life."

^^^ This!

To some extent I knew I was struggling but it was difficult to gauge and I put at least some of it down to the aging process. Finding out that it wasn't and the speed of the return to clarity made me realise the amazing job our livers do in regulating our bodily processes and removing toxins, etc. that effect our brain.

My Doc also makes use of u/s to check for portal hypertension. From what he explained, he is not just looking for flow reversal but also enlargement of the vessels (some) and bypasses where the pressure forces new paths that take shortcuts rather than infiltrating the liver tissues. I don't have varices but was starting to develop abdominal oedema pretreatment and platelets were in the 90s but now fluid retention has gone and plts are stable around or just under 150.

[Mugwump]

Eric, so pleased to hear the news of such good results from your annual checkup particularly that your portal hypertension seems to have resolved. I'm sure that with your resolve and determination even your pork factors will abate with time. (I know someone of the medical persuasion who I'm sure would prescribe as much wading and casting as possible for that so you can tell your wife that you are "just following the doctor's orders." )

Off the topic but just as relevant IMO. We are going to see a weather change with January rain and rising rivers this year according to the recent forecast! What this means for me is a possibility of doing river drifts and spey casting for catch and release Steelhead. So I might just be able to follow doctors orders shortly .

I will post some pics of the drift on the river. Winter Steelhead fishing is a beautiful peaceful quite time on the upper Cowichan River. Without the noise and nonsense that accompanies the party crowds and booze frenzy that goes on with plastic rafts and bikini clad teenyboppers during the summer. 

I see you have had one tough ride, GT3a and all, I will put in a few spey with a snake roll for you on the best water with my fingers and toes crossed. If I don't blow the anchor who knows I might even hook a fish or two!

Here is looking at you and a full cure soon.

Tight lines!
Eric

[Sergey]

Gaj, good luck with your treatment!

[Gaj]

Thanks Eric, Ive been very lucky with early intervention and now increasing access to new tx so grateful for that and looking forward to the road to recovery, whether fast or slow.....sadly not all get the opportunity.

OT again, I'm on the other side of the world so summer here and even down south the trout are deep in the lakes. Hoping to get north again around April this year to chase Barra(mundi), missed the last couple of years due to these issues. Mostly what you would call jerkbaits but will take a 9/10 weight as well. No problems with plastic rafts and bikini clad teenyboppers up there but we don't wade much due to the crocs. 

Sergey, thank you for your well wishes too. Don't wait too long to decide.

[Mugwump]

Thanks Eric, Ive been very lucky with early intervention and now increasing access to new tx so grateful for that and looking forward to the road to recovery, whether fast or slow.....sadly not all get the opportunity.

OT again, I'm on the other side of the world so summer here and even down south the trout are deep in the lakes. Hoping to get north again around April this year to chase Barra(mundi), missed the last couple of years due to these issues. Mostly what you would call jerkbaits but will take a 9/10 weight as well. No problems with plastic rafts and bikini clad teenyboppers up there but we don't wade much due to the crocs. 

Sergey, thank you for your well wishes too. Don't wait too long to decide.

Funny that you mention being in danger while fishing from crocks, we have other issues with the wildlife to deal with.

In October 2010 one of the triggers that I am certain advanced my cirrhosis rapidly was my reluctance to go fishing with the grizzlies by myself without bear spray. The day before they had chased me off the river, so I chickened out and instead visited with some friends. Turned out that they had a bad case of the flu that killed a whole swack of seniors here in BC that year! I caught it and got sick as a dog for over a month and a half. When I went to get my enzymes checked in December of that year they were through the roof and my doctor told me I now had advancing cirrhosis. Before that I had never experienced brain fog but after 2010 it started to really effect me.

I have had a flu shot every year since including the year I was treated. Unfortunately they missed the mark and the shot during the 2014-15 season didn't protect me so I caught a nasty flu bug during the last few weeks of treatment. So I had one hell of a rough ride by EOT with Harvoni, even though it seemed at first that treatment was going to be a breeze.

What I am alluding to here is you cannot know how other diseases will weaken your immune system when you have HCV. I know that if I had not reached SVR, for me the risks of catching even a mild cold could have become deadly.

Give em some sore lips in April Gaj, Damn the crocks full speed ahead! If they get in the way just stick em with good stick and hook and then you will be in for a real fight. I always wondered if you can fly fish for them crocks, might be one hell of a show eh? Well at least for a few seconds

Here is what we have to put up with other than the crowds of party animals, whether or not the animals are the humans is the question when it comes to fishing further north in Alaska at least
https://www.youtube.com/watch?v=7Ny3O_EpgJY

Then again pull this kind of stunt in Canada and you might wind up being charged as these clowns in Alaska should have been!

This is the attitude that we believe in.
https://www.youtube.com/watch?v=HjXGI6-iKlU

Then again sometimes this is what I would like to do instead when I get hungry enough.
https://www.youtube.com/watch?v=CVS1UfCfxlU

Who knows I might just get to Tasi for the trout some day always wanted to go there.

Well enough off topic Sergey, I truly wish you the very best in what ever decision you make.

Eric



 

 

[Sergey]

Eric, Gaj - thank you for your wishes. I think about treatment, but not yet ready to start.

[Lynn K]

Just went in for my annual liver center visit. As I am now 2 years post cure I has a discussion with the nurse practitioner who I see for these. I asked her about my prognosis if she thought I would improve time and she was not optimistic about my possibilities as I have had cirrhosis for 9 years now and enough portal hypertension to cause a long standing low platelet count and esophageal varicies back in 2012. She said her expectation is that at some point she expects I will decompensate and develop either ascities or hepatic encephalopathy in the future. True my liver isn't being harmed but it is not in great shape and it lives in an aging body that with each year will have a harder and harder time recovering from even minor illness.

Needless to say this was not the kind of news I would like to hear. That even though I am finally cured of hep c I still have a good chance of not living a full live span and dying earlier than I could have from liver failure.

So looks like for me the No road to recovery.

[KimInTheForest]

Very sorry to hear that news, Lynn! If I were in your circumstance, I would take it with a grain of salt (well, maybe not salt, since that is problematic health-wise).

I say that because I believe there is always hope, and that we always have the ability to change our circumstance through our own actions and decisions, and because the view we hold of our future will often define our future (i.e., it is mutable), and most of all because doctors and other medical professionals are so often WRONG in what they believe and what they tell patients.

I mean, they are working with the best knowledge available to them and within the paradigm they have been programmed to believe is the sole map of reality where human health is concerned. But that is part of their problem. They can not conceive of a patient changing the narrative through her own actions and choices. Diet, outlook and exercise are my big go-to techniques for changing the narrative. Most doctors see no validity in any of these as tools to use against major health problems. I know from repeated personal experience that they are wrong.

Best of luck to you Lynn!

kim

[Lynn K]

Thanks Kim

We did discuss I need to lose some weight and get back into exercising but even so that she does feel I will eventually begins to decline. I did say I have done ok so far so I don't think it will happen. That I will stay on the good side of the statistics.

We also discussed subclininal HE which I guess happens in about 70% of patients with cirrhosis.

Really for me developing HE is my greatest fear. I keep thinking about the book I read in my youth "Flowers for Algernon". The idea of slowly losing ones self, ones mind as you have known it to be. 

Go not softly into that good night rage, rage at the dying of the light.

[KimInTheForest]

I remember "Flowers for Algernon" - made a big impression on me too. I hear ya about the HE fear.

kim

[dragonslayer]

Lynn, youve been through so much in your search for a cure, and youve survived it all.. Clearly, youre a fighter.  Statistics, odds, etc, are just that.. They dont have to necessarily apply to you and define your future.   Please, just keep living your life keeping a positive mental attitude, and see what happens.    Also I agree with what Kim said regarding taking a positive attitude in finding things to do to improve those odds.. Be proactive about exercise... Just do it.   Believe me, in short order, it will become the norm, and you wont want to be skipping days...

Im really not trying to be pollyannaish about this..    But with all youve been through, you  deserve a big time break, and I just want you to do everything you can to give yourself the best odds.. You can beat this!!

[andrew90]

Hey Lynn im sorry to hear this terrible news, i wish you the best! do you think a second opinion would be an option? i was just thinking it cant hurt to have a fresh set of eyes on you. the new doc could have a more optimistic outlook on the future like Kim said with Exercise and Diet being a important roll in your health

[I fightis thetitis]

Hey Lynn,

First of all, she is a nurse practitioner and not a REAL GI dr giving you a prognosis. No dis respect to her but you may know more about cirrhosis then she does.

Second, I was told by a previous GI that once my liver is clear of hep c, (I'm F4 considered cirrhotic) and as long as I eat right, exercise, don't drink or do drugs, My liver will always try to repair itself, even when it has bridged, is noduled and has severe scar tissue.
I believe that you "may" have received an "ill advised" bad prognosis.

A positive predictor for us cirrhotics is healthy exercise and a lower bmi. Are you on an exercise routine or program? 
I bet adding more physical activity, even longer walks will help with any ascites and for certain the mental side...
For me..no matter how bad I feel, A good workout with some deep breathing is like hitting the reset button.

Fight on and live!

Greg

[I fightis thetitis]

Opps sorry.. I just read your second post where you addressed exercise.. At least I was on the right track..

[Mugwump]

Lynn the good news is that subclinical HE does not actually kill brain cells.

Structural Brain Damage Associated With HE
HE associated with chronic liver failure (regardless of whether the liver disease is caused by alcohol or other factors) does not result in significant loss of nerve cells (i.e., neurons) in the brain or in other readily observable structural damage to the neurons. In contrast, liver failure causes significant changes to supporting brain cells called astrocytes. These large star–shaped cells are essential to the functioning of the central nervous system because they help maintain the proper composition of the fluid surrounding the neurons.

https://pubs.niaaa.nih.gov/publications/arh27-3/240-246.htm
Unfortunately the best info available on the net about HE is related to alcohol induced cirrhosis.

Before treatment and cure of HCV there were times that I experienced hand tremors, euphoria, loss of short term memory, and worst of all depression. All classical symptoms of subclinical HE. 

I believe that you can go on without reaching the decompensated state because you have very little effects from the portal hypertension caused shunting of blood. Just maybe you have a little more leaky pipes to deal with.

It might very well be that some with cirrhosis develop ascites faster without having the brain altering effects of portal hypertension caused HE happen first.
Either way heres to you and no more worries about losing the beautiful mind that is on top of that sweet head of yours!
Cheers
Eric

[Lynn K]

yeah I have exercised in the past but not for several years now and my BMI has crept up there to 30.0 or low end of obese.

The other issue is I will be 59 this spring so I'm not getting any younger and it is harder for older bodies to heal in general especially when already compromised with advanced liver disease.

Also I was diagnosed with cirrhosis by liver biopsy back in Jan 2008 so over nine years now I had esophageal varicies enlarged to the point the required banding back in 2012 so I have been sick from liver disease for a long while now.

She is not just a nurse practitioner but one who specializes in liver disease as she does work in the liver transplant center of one of our major hospitals here in Seattle. I do agree with her opinion but one can spin my situation one way or the other. It was more of a reality check that I still can end up dying from my liver disease.

On the other hand statistically it is not set in stone and yes I can help by losing about 30 lbs to get to a BMI of 24.9 high normal.

Tough to find the time for exercise as I am working and going to college full time (online) so I will just have to dig a little deeper and find a way as it seems my life depends on it. Come to think of it the last time I lost weight was when I was originally diagnosed with cirrhosis back in 2008. lost about 20 lbs that time and ran a 10K.

Just wanting to lean on a shoulder right now kind of sad and scared and hoping to see 60 years old and beyond....   :-(

[andrew j]

Hi Lynn,

I have been thinking about you all day.

Ah ...

First impressions?

All sorts of things, I guess.

You know me -

It's thoughts and prayers.
Grace is close by - whatever happens.

I agree with Dragon.
You really can beat this.
... and yes - healthy living does help!

What else?

Just -
Lots of love,
A.

[Sergey]

She said her expectation is that at some point she expects I will decompensate and develop either ascities or hepatic encephalopathy in the future.

Lynn, what is the reason for such her expectations? Are your liver function tests (like MELD, albumin etc.) becoming worse with time? Do you take diuretics?

[Lynn K]

My MELD score is 7 my liver enzymes and albumin are normal.

Yes I do take a diuretic have been since 2008 for some lower leg edema and also I have had some small amounts of ascities which is only observed on ultrasound testing.

The reasons are is because I have had liver cirrhosis for 9 years now and developed portal hypertension as evidenced by my low platelet count and esophageal varicies. Old bodies and systems don't recover from illness and injuries as well as when we are young. Making it that much less likely my liver will improve.

For people with advanced cirrhosis we are considered to be in frail health in general that is why I have gotten both the pneumonia vaccines done early in life and am told to get my flu vaccine as early as possible  every flu season. Basically if I should develop any illness it could result in my becoming fully decompensated which would result in my developing ascities HE or both and then being placed on the transplant list.

So really all it would take is some bad luck and I am done.

As far as transplants by the way from what I have read there are about 16,000 people waiting for new livers in the US and about 6,000 transplants performed per year. Many people will die waiting for a new organ.

[Sergey]

Are some other causes of ascites possible (for example, some heart problems)? Which was your albumin before starting diuretics? I guess, with MELD 7 and with normal albumin, probability of liver failure is not big in near future. You need regular HCC screening and screening of esophageal varices. It seems, your liver works, this is not situation of low albumin and high MELD.

I hope you will be fine.

[Sergey]

Personally, I don't understand reasons for poor prognosis, with normal albumin and MELD 7... My MELD is stable 8-9 since diagnosis, during 11 years. Just as guess, it may be good to lose excessive weight and get rid of diuretics (because they may cause adverse effects). Possibly, second medical opinion may be helpful.

[Lynn K]

When I was first diagnosed with cirrhosis I read that after 10 years of infection there is a 50% chance of a patient becoming decompensated and requiring transplant.

I am at 9 years  since diagnosis it is just a statistical thing. Having had cirrhosis for so long does not make for great odds. Just because we feel fine now doesn't mean we couldn't with any negative heath event could overload what is left of our livers and become decompensated. All it could take is a bout of the flu or food poisoning. Really can't quit the duretics every time I try my toes swell up like little sausages I am taking them because I have cirrhosis to treat my edema and mild ascities.

And yeah I have been stable at MELD 7 only thing was the varicies but lab work has been consistent. But like they say past performance is not a guarantee of future results.

These people are my second medical opinion. My previous doctor was saying I could develop HE at any time today, tomorrow, one year, five years, or maybe never. He was saying that only 4 years after I was diagnosed with cirrhosis. I didn't have anything exciting in my lab work either. Low platelet of 80 to 90, ALT and AST around 20 above max normal and INR 1.1. I have never had ALT and AST test results above 100.

That was why I changed to this office that I go to now. I started here in 2013 right after I had my varicies banded.

[Sergey]

I don't know much about HE, I feel that it more often may appears in decompensated state - with high MELD, low albumin etc. It is possible to test yourself with "number connection test" - http://apef.com.pt/dmdocuments/hepcalc/encefalopatia_teste_de_conexao_numerica.pdf

[gnatcatcher]

. . . It was more of a reality check that I still can end up dying from my liver disease.

On the other hand statistically it is not set in stone and yes I can help by losing about 30 lbs to get to a BMI of 24.9 high normal.

Tough to find the time for exercise as I am working and going to college full time (online) so I will just have to dig a little deeper and find a way as it seems my life depends on it. Come to think of it the last time I lost weight was when I was originally diagnosed with cirrhosis back in 2008. lost about 20 lbs that time and ran a 10K.

Just wanting to lean on a shoulder right now kind of sad and scared and hoping to see 60 years old and beyond....   :-(

Lynn, you have definitely earned the right to a "pity party." But already in these past few days, your posts show that you are gearing up to do what you know you need to do to prevail. They also show that you are inventorying the things that make this fight necessary as well as the characteristics of the opposing forces.

Knowing that it is a matter of life or death is THE best motivator for successful weight loss. Dieting will be tough, with age and gender working against you biologically. But you've successfully lost weight before, you've trained for a 10K, and you've endured incredible torture en route to SVR.

One huge obstacle for you now is going to be getting at least 7 hours of good sleep per 24. Inadequate sleep is a major cause of weight gain. As you prepare to embark on a dieting and exercising routine, you may have to reorder more than just your pantry. Are you still working a night shift? Is the lighting fluorescent or LED (gives off more blue light than incandescent)? From the Harvard Health Letter: "If you work a night shift or use a lot of electronic devices at night, consider wearing blue-blocking glasses or installing an app that filters the blue/green wavelength at night." http://www.health.harvard.edu/staying-healthy/blue-light-has-a-dark-side

The scientific knowledge about successful dieting and productive exercising has really taken off. It's possible (and usually more successful) to ease into a diet rather than quit all of the bad stuff cold turkey. On the exercise front, if you don't have cardiac factors preventing very high-intensity workouts, they can achieve equivalent results in much less time.

We're rooting for you, Lynn. L'chayim!

Gnatty

[Sergey]

High-intensity exercises with advanced cirrhosis may cause additional risks and burden for liver... I prefer weight loss by dietary restrictions of carbohydrates.

Physical exercise increases portal pressure in patients with cirrhosis and portal hypertension - https://www.ncbi.nlm.nih.gov/pubmed/8898644

[gnatcatcher]

Thanks, Sergey.

[Mugwump]

High-intensity exercises with advanced cirrhosis may cause additional risks and burden for liver... I prefer weight loss by dietary restrictions of carbohydrates.

Physical exercise increases portal pressure in patients with cirrhosis and portal hypertension - https://www.ncbi.nlm.nih.gov/pubmed/8898644

Certainly this is a big part of why we have a tough road ahead. I just did a full day on the river and the day before 10 hrs on my feet cooking. I know if my doctor had told me to take it easy on my last physical I would have still gone fishing but put the nix to the work part

If I am going to blow a gasket I would rather have it happen in the serenity of what is left in this world that is beautiful. Mind you getting my stiff out of the bush would be a royal PITA for someone but then again making some other people get serious exercise getting my body out of the bush would kind of even things out IMO

[I fightis thetitis]

I hear ya Lynn,

You always have a shoulder to lean on here.
here is a more recent link from Karen Hoyt regarding exercise and all stages of cirrhosis. http://www.ihelpc.com/exercise-with-cirrhosis/
I believe the link Sergy pasted is from 1996.. although would still seem relevant.

Karen has some great and positive exercise advice for anyone with cirrhosis who wants to feel better.. and to get in shape.

Here's to feeling better!!!

Best always,

Greg

 

[Lynn K]

Thanks all I will check the links. I hear walking is free and very helpful in losing weight longest journey starts with the first step right?

Actually I have an app for that Stroop Test Encephalapp. I do self check with it occasionally.

Actually subclinical aka minimal HE is found in about 50% of patients with early cirrhosis. Development of overt HE is often the first symptom of a patient moving from compensated to decompensated cirrhosis. I found this about HE triggers


What Triggers or Can Cause HE to Get Worse?

http://he123.liverfoundation.org/diagnosis/what-triggers-or-can-cause-he-to-get-worse/

"An episode of HE may be triggered by any of the following things:

Infections
Constipation
Dehydration: This happens when you don’t get enough water or other fluids.
Bleeding from your intestines, stomach or esophagus (the tube that connects your mouth to your stomach). This is referred to as gastrointestinal, or GI, bleeding.
Medications that affect your nervous system, such as sleeping pills, antidepressants or tranquilizers.
Kidney problems
An alcohol binge
Surgery
Having a portosystemic shunt: This is a tube that’s placed in your liver, sometimes called a TIPS, or a surgical procedure to reroute blood flow and relieve high blood pressure in the veins in and around your liver, a condition called portal hypertension."

I left the swing shift career job last October for a new career. My current job is weather and how many students I have on any given day dependent. I am also taking 3 college classes which is considered full time online.

Still having some trouble getting used to sleeping early especially when I have an assignment due for school. These are some of my challenges in finding time to up my activity but one step at a time right?

Anyway thanks guys just like you not many people I can discuss this stuff with and especially who will understand ya know

My best to you all

 

[Sergey]

I was told by a doctor that walking is safe in my case (beginning cirrhosis), high-intensive activities (for example, such as lifting of heavy weights) should be avoided. It seems, it is important to be active, but do not overload yourself and liver.

[Lynn K]

Sergey

As far as your decision about to treat or wait I just wanted to remind you I was without any symptoms for the first 4 years after I was diagnosed with early cirrhosis. To me the risks you are concerned about of treating are not as great of waiting with having cirrhosis. Because I had to wait because there was nothing for me to treat with I am now in a more difficult situation than I had hoped.

Your cirrhosis will progress with time as long as you have hep c.

[Mugwump]

Lynn I don't think that HE is as much of a concern for those who clear the virus and have little history of developing elevated ammonia and the other toxins that cause HE.

The brain fog associated with long term liver damage is something which you seem to have avoided so it must be that the damage done to your liver though more vascular in nature is perhaps less structural otherwise you would have experienced HE to some extent already. It is going to take those of us with more severe liver damage much longer to asses how much we are capable of healing. I have the feeling that your ascites will back off now that there is no more damage being done to your liver.

Here is a test of a different https coded image hosting site to see if it stays reliable and will work correctly with jpegs, gif or avatars.

If the link holds over time then I will keep using it because it is a secured registered .org instead of a .com site.

Lynn brain fog from altered blood chemistry is something which you would know if you had the problem. The first signs are not being able to concentrate for more than a very short time or remember things short term. You become very prone to distraction and wandering thoughts, for me like I said it came to a point where I would ask my wife to drive because I knew I was becoming a real road hazard.
I think you are going to be just fine girl!

Cheers
Eric

[Sergey]

Lynn, progression of your fibrosis was relatively fast... You had platelets 96 in 2014, such platelets often associated with damaged liver. How much platelets you had at time of cirrhosis diagnosis? Initially, before cirrhosis, do you have normal platelet count?

My situation seems relatively stable during 11 years, and I was ready to start treatment year ago. But after appearance of new controversial data about HCC risks I started to feel that it should be more negative things than just abnormal transaminases and fibroscan value - for taking possible risk of increased posttreatment HCC rate. Recently, I had read some tweets about discussions on "HCC summit 2017", and some tweets seem not very optimistic:

"Sufficient data to withhold DAA in compensated HCV patients to avoid increases HCC risk? Controversial discussion" -
https://twitter.com/Jo_Mertens/status/827815596628779009

If my situation  was stable during past 10 years, possibly, just as guess, it may remain stable during next 10 years...  If situation will become worse (for example, if platelets will fall below 150, or if it will be problematic to drive a car - as described by Eric) - hope treatment may be started at any moment. I am planning to lose some weight, repeat fibroscan and ultrasound in a near future and discuss situation with hepatologists, to hear their opinions - and make decision after that.
 
Also, some good news - new study (http://onlinelibrary.wiley.com/doi/10.1111/apt.13961/full) shows relatively optimistic data about HCC risks with cirrhosis - it may be possible, that HCV carriers have only 4% per 10 years risk of HCC. This is much lower than previously reported 2-4% per year!

With best wishes,
Sergey.

[Lynn K]

Ok so I was assuming you were only diagnosed with cirrhosis in  2014 from your dignities. I do t have data from my platelet count when I was diagnosed but I do know in the past it was normal. Don't know what you mean fast I have had cirrhosis for over 9 years and the progression I have had is not uncommon. The low platelet count is usually a first indication of cirrhosis.


Really for he HCC is not my biggest concern as it is less likely to occur and really could be a good thing as it could qualify a patient a transplant  when they are otherwise in physically good health otherwise vs being very sick with a MELD over 30. My concern for myself is the higher possibility of decomposition withbadvanved ascities and HE which is far more dibilifatuin than not being able to drive a car. How about forgetting how to operate a tv remote control or every other simple everyday task?

Anyway I just personally think you are taking a larger risk by not treating before you develop symptoms especially given the low risk of HCC and the greater risk of decompensation making you more difficult to be successfully treated and at greater risk of further decompensation even with cure as I have been told is a possibility. But not my life so I just hope you don't come to regret your decision to wait and I hope you don't wait until it is too late.

[Lynn K]

Thanks Eric

Yeah I end up second guessing myself about every small memory error. Really if anything I seem to be making less of those where did I leave my keys kind of things. I was working on second shift for several years but that ended in October. I have had a bit if difficulty establishing a more normal sleep schedule which is somewhat concerning as sleep inversion is also a symptom of HE. But then again my family and I tend to be night owls when I visit my brother we often end up chatting the night away have done that for years.

What is normal life for cognitive ability as I am in my late 50's? What is my natural state of being a night owlet sleep reversal? And what is possible minimal HE?

[Sergey]

Regarding to HE, yes, it can be very debilitating... I am not familiar with this thing. Just as guess - our performance in psychometric tests (like number connection test, EncephalAPP etc.) will be declined before onset of minimal HE. Aggressive diuretic treatment may cause HE. If I correctly understand, mild ascites (only detectable by ultrasound), do not require diuretic treatment, according to EASL guidelines - http://www.easl.eu/medias/cpg/issue4/English-report.pdf

[Mugwump]

Thanks Eric

Yeah I end up second guessing myself about every small memory error. Really if anything I seem to be making less of those where did I leave my keys kind of things. I was working on second shift for several years but that ended in October. I have had a bit if difficulty establishing a more normal sleep schedule which is somewhat concerning as sleep inversion is also a symptom of HE. But then again my family and I tend to be night owls when I visit my brother we often end up chatting the night away have done that for years.

What is normal life for cognitive ability as I am in my late 50's? What is my natural state of being a night owlet sleep reversal? And what is possible minimal HE?

For me minimal HE at first was a noticeable loss of concentration and awareness. Like when you were young and looked out the window during a boring lecture in school and drift away until the teacher rouses you.

A significant and sustained loss of situational awareness regardless of sleep patterns was for me the first signs that something major was going on. Sure enough my levels of ammonia were up slightly and my bilirubin was climbing. This happened at the same time as progressive physical weakness with no rapid recovery from exercise, weakened and rapid pulse with constant slight myalgia in my major muscle groups. My pulse rate resting was in the 80s for over 3 years. 

These are the first signs of the shunting of blood past the liver. I am glad this is as far as cirrhosis got for me and the confirmation that my blood flow to the liver and spleen is now close to normal was very reassuring to say the least.

I have to work tomorrow because one of the cooks cannot get out of their driveway. Perhaps if I serve up oven roasted Punxsutawney Phil Sowerby groundhog stew with sour dough biscuits it might help even things out a little with the snotty little snub nosed, confabulating but somewhat accurate rodent prognosticators.

Keep your stick on the ice Lynn.
 

[Lynn K]

Thanks guys

Hey Sergey I am taking 50 mg of Spironolactone so a low dose. I have been taking it since 2008 for edema. If I try to quit taking it other than uncomfortable/mildly painful foot swelling I also start to have swelling in my knees which also becomes painful. As much as I wish I could quit the low dose Spironolactone I don't think I can at least not right now.

Eric funny you mention pulse rate. My pulse rate is the main reason I was banded vs taking a beta blocker for my esophageal varicies. The goal with beta blocker therapy is to get the pulse rate below 60 but my resting pulse rate is already less than 60 BPM so using a beta blocker was a no go for me. Really though had I had a choice I prefer the banding to eridicate the varicies seemed to me like better to fix the blood vessels.

Here is a great video about HE called "Wrestling the Monster"

Everything you never wanted to know about hepatic encephalopathy

http://www.hesback.com

[Mugwump]

Thanks guys

Hey Sergey I am taking 50 mg of Spironolactone so a low dose. I have been taking it since 2008 for edema. If I try to quit taking it other than uncomfortable/mildly painful foot swelling I also start to have swelling in my knees which also becomes painful. As much as I wish I could quit the low dose Spironolactone I don't think I can at least not right now.

Eric funny you mention pulse rate. My pulse rate is the main reason I was banded vs taking a beta blocker for my esophageal varicies. The goal with beta blocker therapy is to get the pulse rate below 60 but my resting pulse rate is already less than 60 BPM so using a beta blocker was a no go for me. Really though had I had a choice I prefer the banding to eridicate the varicies seemed to me like better to fix the blood vessels.

Interesting that your pulse rate is low. This could very much explain why you have not experienced the shunting of blood past the liver that leads to toxin caused HE. It is know that those who have elevated BP shunt blood quicker with the onset of cirrhosis so this explains completely why I experienced shunting before ascites and could also explain why you experienced the opposite effect.

[Lynn K]

Well actually my blood pressure at the arm is elevated from what I used to be but I need to lose about 30 pounds for a better comparison of data. Also the slow pulse is a relatively new  thing all my younger life my pulse was 70 to 80 so per my younger years my BP is slightly elevated and my pulse is decreased.

I do have portal hypertension as evidenced by my slightly enlarged spleen and my below normal platelet count and especially indicated by my grade 3 varicies. I have never had my ammonia levels tested but I have read there is not a perfect correlation between ammonia blood levels and HE symptoms. My bilirubin has always (knock on wood) been in normal range.

[Sergey]

Lynn, is it possible to use 25mg of spironolancton?

[Lynn K]

I doubt it would be effective enough. Even with the 50mg I still have some edema. I wear socks all the time at home because if I try to go barefoot my feet swell and even the small amount of pressure from the socks helps to minimize the swelling.

Pretty sure the Spironolactone is probably the cause for my killer leg and foot cramps that I sometimes get.

[Sergey]

Is it possible that special compression stockings (like www.sigvaris.com) may be helpful? I have some varicose veins on leg and wear such stocking every day.

[Lynn K]

Yes I have those I use them if I am on a long flight.

Just read this from the AASLD recommendations for follow up for those who achieve SVR with F3 F4 I should point this out to my NP

http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

"Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR, decompensated liver disease (with the exception of hepatocellular carcinoma) rarely develops during follow-up, and overall survival is prolonged. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients who have advanced fibrosis or cirrhosis continue to be at risk for development of hepatocellular carcinoma after achieving an SVR, although the risk in these patients is lower than the risk in persistently viremic patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis who achieve SVR experience increased survival (compared with patients with cirrhosis who are untreated or in whom treatment fails), but still may be at some risk for hepatocellular carcinoma; thus, they should continue to undergo regular surveillance for hepatocellular carcinoma despite the lowered risk that results after viral eradication. (Bruix, 2011) The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma. Alpha-fetoprotein (AFP) is considered an inadequate screening test for HCC. (Bruix, 2011)"

For me the key point is:

"Among patients with advanced liver fibrosis who achieve an SVR, decompensated liver disease rarely develops during follow-up, "

So why does she expect I will decompensate eventually?

[gnatcatcher]

. . . So why does she expect I will decompensate eventually?

Maybe she's just trying to scare you into losing weight?

. . . Pretty sure the Spironolactone is probably the cause for my killer leg and foot cramps that I sometimes get.

Dunno -- I get intermittent killer leg and foot cramps, too, but I've never been on Spironolactone or any other diuretic. Also, my FibroScan scores keep going down:
5/13/15: 19.5 kPa
6/29/16: 11.4 kPa
2/01/17: 9.4 kPa
but the killer leg and foot cramps still happen.

My hepatologist wants me to have a final FibroScan in a year and says if it's below 9.0, I won't need the twice-yearly ultrasounds. Thanks for letting me know that AASLD disagrees.

Gnatty

[Lynn K]

Actually she didn't lean on my weight much she even commented about how hard to get motivated to lose the baby weight she gained.

Maybe she didn't lean in me because she is more or less about where I am as far as slightly overweight hard to chastise someone else when you need to do the same thing.

She didn't say anything about losing weight would help

I dunno maybe because she is a nurse and not a liver doctor. I am sure over the years she has seen a lot of parients who were ok but who eventually decompensated. But that would have been before we could cure hep c.

Ps lost 5 lbs this week