Interesting anecdote from my Hep docs office

For what its worth....
During general discussion today about my Hep status , the PA at my docs office said that even though no one really wants to come out and say it.. she is finding clinically that patients with little or no side effects from treatment , particulary anemia ,are not clearing the virus and remaining clear. She indicated that she is seeing the same result over and over again.

I discussed the issue of type 2 Hep patients not remaining clear after 24 weeks and the possibility of type 2 patients needing to go to 48 weeks , she indicated she is not seeing that result clinically at all. She didn't quantify the statement , only said that largely type C heppers are clearing at 24 weeks.

My docs office has a treatment protocol that doesn't call for a PCR at 4 weeks , but studies indicating 72 weeks of treatment if not clear at 4 weeks is being evaluated.

All of this was in conversation , so take it with a grain of salt , or possibly the entire salt shaker.

[genedog]

i think its true i did 55 weeks of tx with almost no sx at all and virus came back while on tx week 40. around week 34 i dam near felt normal on tx think meds quit working

[Forseegood]

I'm kind of a chronicler of sorts, and a researcher (used to be by profession) and I'm paying special attention to posts of all kinds, and I've heard this over and over again, from patients saying their docs and treatment nurses told them this, and from certain patients...

I've said it before (and it is mostly anecdotal speculation, so maybe I rightly got hammered for even mentioning it before) if youre not feeling any side effects, or very, very little from the meds, youre body might not be not putting up a big immune defense/response that the meds are supposed to cause...with a particular nod to the anemia, as was mentioned...

My ex-boyfriend, that I got this with, felt no symptoms from the disease at all, and he got to be borderlind cirrhotic, and he treated 3 times with hardly any side effects at all, to no avail, though he did help his liver by treating...I've heard this kind of stuff from other people before...

Ive even heard it speculated that you could say the same thing about people with the disease itself, often people who feel no symptoms at all from the disease/ their bodies aren't putting up a big immune defense against the disease and it's quietly eating their livers...When you get a virus like the flu, and your body tries to fight it off, you get certain "flu like" symptoms....Ive had more than a few friends tell me they didnt get any symptoms at all and they are much more advanced then I am, and I do suffer symptoms with low liver damage....

Now before everyone gets their panties in a knot, course there are people who do not go along with these paradigms, people who don't feel any symptoms with the disease, and are still low to no liver damage because they aren't that sick from it yet...and people who take the meds with hardly any symptoms, and still SVR anyway...and people who get lots of side effects and don't clear...I've just found this phenomenon interesting, to say the least...

[debfromoakland]

48 y/o f 2b, 2/2, w/ little progression from my '93 bx to my '05 bx,  2m vl @ start tx, finished treating 3/2/06, undetectable at end of tx and @ 6m !!!! I went into severe hgb drop at 3weeks, procrit  for rest of tx.  On the other hand, I had almost zip sx during 25+ yrs of infection.

[tulsatime]

Hi Mark, just wanted to see how you was doing. did you go to the dermatoligist? I have spots on my legs too. But I think there are related to my cirrhosis. The look like small raised flat moles and they are on my lower legs. It started years ago even before I did treatment the first time. So I can't blame the treatment. Let me know what your Dr says, I was worried cause I haven't seen you post much lately. Hope your doing OK, I am on week 3. not been too bad yet. Talk to you later, Debi

[52TELE]

I meant to say type 2 heppers are clearing at 24 weeks.

[fishdoc]

look in the archives under fishdocs consult... that is exactly what he indicated, which is why I am on 8 riba a day... and my HBG is still holding at 11.6....it is a fairly interesting thread..

[tulsatime]

Hey congrates on the UND!!! wonderful news, Thanks for sharing your info, Take care, Debi

[52TELE]

Hi tulsa , thanks for asking. As you know , sometimes during tx you just kind of go into survival mode to keep a handle on things , and thats where I've been. I didn't follow my own preaching and let myself get dehydrated and it increased the sx intensity at least two fold. I'm bouncing back.

I moved out of Dallas a few years ago to a small town about 50
miles south. My Mayberry . We have one dermotologist in town and the soonest I could get in was November 28th. My doc gave me a couple of  derm docs I could probably see sooner. Thats the next step.

Take care Debi

Mark

[tulsatime]

Glad to hear your bouncing back. Talk to you later
good night, Debi

[Snookmiester]

I'll let ya know how much weight this theory carries next week, when I have my one year post tx PCR.. 1 month and 3 month Heptimax where undetectable.
I had almost no sx's, and never became anemic. Hemoglobin actually never droped below 12, well it did drop to 11.7 at week 42's CBC..And I remained 100% active and worked fulltime for the 48 week duration.
Sx's are completely irrelevant in determining who will obtain SVR..

[painterlady13]

Hmmmmm  if this is true then I should be clear already lol 7/48 and now on both procrit and neupogen due to low blood counts.  On a good note My doc finally did request an VL test,  done today, so I should hear one way or the other in 2 weeks or so.  I think that is about how long the heptimax test takes....  Also last blood test showed very high feritin levels (752, I think high was supposed to be 450) and they are doing more tests for  hematomachrosis (sp?)   Not really sure where they'll go from there.

[52TELE]

Hi Beagle , good morning.
Beag.. the reason I asked the question was in your behalf. I knew what you had been through and I knew you were seeing a trend and the trend was relapse. When I brought it up , she said ,and I paraphrase ,

" what you are seeing on the forum can not be interpreted as a trend in treatment outcome either way. You are seeing a very very small example of the total number of type 2 patients that are treating and by and large , the 24 week treatment protocol is resulting in SVR".

It does seem rather coincidental that we have seen so many relapse in such a short period of time , but I really cant argue with her answer. It's seems logical.

I hope your able to get the answers your looking for.
Have a good one,

Mark

[52TELE]

Its very frustrating isnt it? There aren't very many things that I can remember seaking out reliable information on and not being able to come up with any. Contradicting studies , contradicting Doctors , unpredictable side effects and on top of that , a little better than a snowballs chance in west texas that its going to work at all.

Snook- You and a few other folks here caused me to think twice about posting that information , but I tried to qualify what was being said as anecdotal. I really hope your right and their wrong.

[Forseegood]

I know what youre saying, but one person's experience does not a maxim make, I would be interested to see some real data on masses of people, if the pharma would just keep better tabs on this stuff....which they prob aren't...what drug co wants to say their product gives you sides and you might be better off overall if you have them? I do know another person who had practically no sides and SVRed as well, but it is interesting...

[Snookmiester]

Absolutely no correlation between sx's and whther or not a person SVR's.... Most people that come to forums such as this are ones in which are experiencing serious sx's, etc. Those in search of support. The ones not experiencing sx's, usually don't seek help, support, etc. They just go about their business. From being on this forum and a few others over the years and discussing this EXACT topic with my Doc, I have a firm opinion in the statement I made above: "There is not correlation between sx's and whether or not a person SVR's"..

Just a thought, but the first treatment for HCv was administered three times a week. Speaking with individuals that have undergone that old tx, the newer combo tx is a walk in the park as far as sx's are concerned. That tx only brought about maybe 10-30% SVR rates. Hey, but if theory mentioned above was correct, wouldn't these individuals that experienced such severe sx's have cleared?
NO CORRELATION whatsoever!!!

[Mister beagle bailey]

I have to diagree, as many 2's will also.  I'm a 2B, starting VL 318,000, stage 0 and grade 1.

Still, I did 24 weeks of tx, was UND, HGB at any given time was below 10 and my lowest was 6.1 durning tx.  I had bad sxs from tx and never reduced my dose.  My 3 month post tx showed I relapsed.  I did every thing right and still relapsed.

Almost same story for many here:  FLguy - type 3 relaped after tx
                                  Tulsa - type 2 relapsed  

I think I'm going to open a thread for 2's and 3's that relaped, to see how many of us there are.

Beagle

[Snookmiester]

I just wanted to add one more thing in regards to the statement you made above:
"often people who feel no symptoms at all from the disease/ their bodies aren't putting up a big immune defense against the disease and it's quietly eating their livers..."

As you know, I was seen by one of the most well respected Dr's in the world in regards to HCV and liver disease. He stated the EXACT opposite of your analogy. I was thought to have a supercharged natural immune system. That is why I never got sick, felt no symptoms of HCV, and had such a remarkably LOW starting VL.. Possibly even why I had cleared the virus on my own previously without tx. My immune system was able to fight the virus, and suppress it by not allowing it to replicate without the presence on any medications. Thus the 4000 VL.
Now his theory was that the actual immune system may have played a major role in the progression of my fibrosis. Just as AIH patients see accelerated fibrosis, those with over active immune systems such as mine can cause damage when they are actively battling an underlying threat, such as HCV..They are fighting so hard, they are actually CAUSING inflamation (inflammation), just as patients with AIH..
I know what your trying to say, and your analogy of a person who gets the flu is substantial....But it does not apply to all.

[mikesimon]

I have an article that supports your premise. It states that it has been documented that at times where there are relatively few liver cells infected with the virus there is a lot of cell death - bystander cells get killed by the immune response. It's collateral damage on a cellular level. Mike

[Upbeat]

Hum
      I wonder it this might play a role when first infected.  Some people get sicker than a dog and their body may be putting up a fight and then there are those whose body puts up no fight.  I have heard people who do clear on their own are very sick from the virus to start with. lots left to learn.

                                                        Ron

[52TELE]

I think the information you just passed on about the autoimmune system and the bystander cells is the single most important thing I have learned about this disease so far. The rest of my lights came on and I think I have a better glimpse of the bigger picture. Thank you.

[52TELE]

Snook , have you ever seen any data , or possibly something from your doc , thats would indicate how common it is to have the "super immune" system? Does it happen very often?

[mikesimon]

I'm not sure that your question can be answered in the context you're looking for. The immune system is not one-dimensional. I haven't had a cold or the flu since 1980. Somewhere between 15% and 25% clear hepatitis c without treatment and in that very specific sense they might have a "super immune system". Does that make them resistant to other types of infections? Perhaps and perhaps not. The fact that I haven't had a cold or flu would suggest that I have a strong immune system and yet I was unable to eradicate the virus without treatment. So in the HCV sense my immune system isn't that great. And I am on immunosuppressive drugs for my transplanted liver and I have been since 2000 and I still haven't been sick one day except for HCV related stuff. In the battle against HCV there is 1) the innate immune response 2) the humoral immune response 3) the cellular immune response and there are many subset repsonses within these 3 main groupings. Then there is the virus itself - the genotype - that factors into the success of the overall immune response. I don't intend to over complicate this issue but it is extremely complex and I don't think your question can be answered simply, if at all and certainly not by me. Mike

[FlGuy]

I subscribe to your theory in at least one respect. The doc feels I was underdosed with riba - tx'd with fixed dose 800 mg for geno 3. And I think most of my sx's were from peg and some riba weakness/tiredness - close to anemia but not quite.   I now believe in the concept of 'riba til it hurts' and think that the most significant evil in tx is from the riba and it's ravages. And, think that those ravages are almost a necessary evil. I think fishdoc used the term 'super-metabolized riba' and if the body disposes of it before it reaches the optimun level of effectiveness, clearing is futher challenged.  So in way, using this therory, sx's are good and may demonstatre effectiveness.  I think I'll duck out of the way for a while now. Like you Foressee, these are based more on observations, comments  and personal experience not cold-hard investigatory facts.

[52TELE]

Thanks for your response mikesimon. I'm not really sure if that was even the right question to ask . It just seems interesting to me that there is another aspect of disease/treatment that we dont typically here about.  At least I am no more confused than I was before. :)

[Snookmiester]

Tele, as Mike stated above, I don't think I can give you any definate answers. But logic would say that if a person such as myself had HCV for over 26 years and his VL was only 4000, something was fighting the virus...Something was suppressing it. When I had my first pretx VL in 04, it was 5462. Dr told me that it was most likely a mistake, and that I should not think much about it. 6 months later, VL is done again, and it comes in at 4000. I was however diagnosed back in 95, but never had a VL done at that time. I looked into tx, which at that time only offered low SVR rates, and horrific sx's. I went the alternative route. Few years later during a boched nose surgery, I bled uncontrolably, and ended up in the ICU.. Actually had to have an embolism to stop the bleeding after 3 previous corrective surgeries failed.
I was tested for every disease imaginable. HCV included. At that time, I was undetectable, and told that the virus was gone.
Then a few years later, up it pops again and thus the 5462 initial VL.. This was all after I started drinking heavily again I might add. As soon as I got my biospy, I stopped drinking, and started poping supplements to boost immune response and lower inflamation (inflammation). And like I said, 6 months later I was at a VL of 4000.
Now the question is how would ones body stop the natural replication cycle of the HCV virus? Well, the same way the meds do, and that is by stimulating the immune response. If my immune system was weak, so to speak, the virus would replicate, as that is the nature of the virus. Remeber, that 15% of people infected with the virus clear on their own.. I might have been one of these, but just didn't have enough to knock it down for good as my Dr put it. That is why he was soo confident that me undergoing tx was gonna cure me, and thus no need for extending, etc.
I do not get sick, colds, flu's, etc.. I might every now and then get a sinus infection all thanks to my surgery, but thats about it. I never got sick as a kid, and was known for not missing a day of school for entire school years.
Do I think this is common, heck no.... But it does happen. I have been on these forums for a few years now, and have only seen one or maybe two other individuals with a VL such as mine. One individual I actually met at my Dr's office, and he was in his late 50's. Borderline cirrhotic, geno 1a, and VL of only 93.. When I asked my Dr about it, he said that our situations where extremely similar in the fact that our immune systems ongoing attack and attempt to suppress the virus may have contributed to disease progression. And how LOW viral load has no correlation with amount of damage. Most of the time, it correlates with increased fibrosis.

[52TELE]

Pefect. I got it.

Now what happened?
(just kidding)
I've always wondered about that 15%. In all probability , they never even know they have the disease.

Whats going on with you right now snook?

[GoofyDad]

At the risk of colossal  over-simplification, as I understand it, death to liver cells occurs as our immune responses are shredding the cells to get at the virons within. I've sometimes wordered if we could suppress that immune response could we happily co-exist with the virus? But as eradication treatments are improving, that discussion seems pointless.

As far as sides being an indicator of treatment, my doc certainly poo-pooed this idea. On the otherhand, it makes sense to me that we all clear drugs at different rates and those who clear more slowly would have higher concentrations of drugs, and potential more severe sides.

Just my unscientific two cents......    

[mikesimon]

You said: "At the risk of colossal over-simplification, as I understand it, death to liver cells occurs as our immune responses are shredding the cells to get at the virons within".
That's not always the case as the quoted material above suggests. With few infected liver cells there is a lot of damage - bystander cells get destroyed in the process.
From above article: Damage to bystander cells is therefore likely to occur in chronic hepatitis C and may explain the extent of
liver destruction observed despite a low number
of HCV infected cells and low numbers of HCVspecific
CTL detected in the liver [81,88,89].
Mike

[GoofyDad]

Point well taken. That's what I get for being simple....some of us just don't have many other choices...

I guess the real point I was trying to make is that, by my limited understanding, the virus itself isn't doing much in the way of damage. This is a case where we're our own worst enemy.

Take care Mike.

[mikesimon]

There is evidence that the virus itself is not cytopathic and that it is our immune response that causes the liver damage. I don't think that's firmly settled and there are those who believe that the virus itself does damage but how to separate out the effect of the virus from the effect of the host response is beyond me. Mike

[beamishboy]

might i suggest a finetoothed comb?...seriously tho, good topic and thanks for dashing my hopes that feelin like sh!t had an upside

[Forseegood]

I just think there is room for a theory here, it's not my own necessarily< I don't have enough data on it one way or another by any means...I just think it's interesting...I just know, that I have heard this from so many patients; that their doctors say something along these terms....that their patients who don't report many sides don't seem to clear as much as the ones who do, with a emphasis on the anemia angle...so many people say this....that their treatment nurses say this, it just makes me wonder...I know a few here who have said this, that their study docs said this...but maybe they just don't feel it's worth arguing here since this is so anecdotal...

As far as this theory that's always tossed around, that it's the people who are expereincing the worst sides who are coming to these boards in search of help for them....maybe this is right....but I don't exactly buy into that whole hog either, on a gut level, I have no proof or real data and I could be dead wrong of course...

When I was first diagnosed, I went to so many hep c support groups, "out there" unrelated to these boards, sometimes I still do...most of the people, I'd say the vast majority, don't come to these boards and it doesn't even occur to them to got to internet boards, when I mention them.....

Many are veterans and professionals of all kinds, some working class, some ex-drug addicts, the whole shootin match, not much different then these boards as far as the demographics... many aren't even computer literate...

I'm telling you, when the people who are treating share, they are reporting sides in the vast majority of cases that "I" see...some you only have to look at them to know they are suffering sides...course, it kinda all shakes out the same way it does here, some people say it's worse some months, or weeks, or days...it changes all the time, etc etc...

Some groups I've been all the people treating are reporting sides with a very few, saying not very many sides at all...I mean, considering what these drugs do on a chemical level....I can't see where hoards and hoards of people "out there" taking them have no sides, and they just don't come here to these boards...

This just doesn't make practical sense to me...but like I said, one person's (my own) experience doesn't prove a universal and maybe your theory is right...not much data on it, that I do know...

I wonder if there are other people here who go to support groups where hep c patients gather? what is their take on this issue?

[Forseegood]

This is kind of unrelated, but did anybody see that news item yesterday? a study on medical studies and research articles? That fully half of them are proved wrong sooner or later? Maybe this study will be proved wrong as well...like Jay Leno said...

[cuteus]

so you hear from patients that their drs told them that feeling like **** is a  good sign. maybe he is trying to make them feel better and give them hope and motivation to continue? because I don't see backed up by scientific data.  

the anemia or the lowering of RBC while on tx, might have some indicative factor of effectiveness, but more needs to be studied.
as for the no sides=no svr, sounds like psychobabble to make someone feel better.

this study can be of use
"Treatment of Genotype 1 Chronic Hepatitis C: Increased Sustained Virological Response with High-dose RBV and Epoetin"
http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_a.html

these subjects did not become anemic because of the epo, so, if they did not get anemia, the svr rates should be lower?

[Forseegood]

Not so much that feeling like shiite is a good sign, that their patients who don't experience sides don't seem to clear as much as the ones who do...I have heard this over and over, again on this board yesterday, these are just patients saying what their docs and nurses are saying which is heresay....of course, not every patient reports this...and of course this isn't scientific by any means, I just find it interesting....

and I'm not trying to imply that every patient who does not expereince sides is not going to SVR, I'm just coming more and more to the conclusion that there aren't many absolutes regarding this disease and a lot of interesting traits...

[Snookmiester]

"as for the no sides=no svr, sounds like psychobabble to make someone feel better."

Couldn't have said it better myself!!

[52TELE]

In my feeble little mind , it works like this . It is not so much having anemia , as it is getting anemia. When the anemia sets in , its because the ribavirin is working ,just because we do something to control the anemia doesn't lessen the impact of the ribavirin is having while we are trying to maintain an even HGB. The ribavirin just wants to tear up our RBC and it doesn't care if we fix them or get more of them as long as it gets to do its thing too.

That is sooo out in left field I cant believe I was able to get that out of my brain. Sorry if I'm not making sense.

mark

[mikesimon]

From: Hepatitis C virus and the immune system:
a concise review
Christel Gremion1 and Andreas Cerny2*
Studies underline
the role of the Fas/FasL pathway in the immuneinduced
pathogenesis by the killing of noninfected
cells (bystander cells) [81,83]. Interestingly,
while normal liver does not express Fas, in
chronic hepatitis C, the expression of Fas is upregulated
in hepatocytes [84,85]. Bantel et al.
describe the correlation between the degree of
inflammation of the liver and the number of apoptotic
cells as measured by detection of activated
caspases, including caspase-3, a hallmark of Fas-
FasL activation [86]. Moreover, recent in vitro
data from our group show that 0.8%

[mikesimon]

If you are interested in studying the Immune Response to HCV here is an article that will probably cost money (Maybe $30.00 or so) to access but it is scholarly and quite indepth.
Found at: Published online 22 March 2005 in Wiley InterScience (www.interscience.wiley.com).
Reviews in Medical Virology DOI: 10.1002/rmv.466
Hepatitis C virus and the immune system:
a concise review
Christel Gremion1 and Andreas Cerny2*
1Clinic for Rheumatology and Clinical Immunology/Allergology, University of Bern, CH-3010 Bern,
Switzerland
2Department of Medicine, Ospedale Regionale di Lugano, CH-6903 Lugano, Switzerland
Mike