new guy in need of some advice

[e2]

Hello All,
I'm new to all this and was hoping to find out what you guys would do in my situation. I found out I have hep c a few years ago and now have a viral load count of 13 million. that's hi I know. However, I don't have any liver damage because i guess i've only been positive for a few years. Anyways, I am about to finish college and start a new career. I am a designer and have been very successful internationally (before even finishing school) and have several lucrative job offers. My field is very competitive and requires one's complete devotion. Its basically all i do. In a few months I will be starting to work at a studio. I don't want to start my career with the side effects from interferon. I could destroy it before it really starts. If anyone could describe the steps that occur during interferon treatment that would be great. Also, if anyone could describe - considering my present state how the virus progresses without interferon that would be good as well.
I am considering waiting until after I've been working a while to start interferon. Also if you guys could define some of the more complex lingo that you use here it would help. One last thing. I've gathered that this microscopic silver solution is a hack, but what about all those testimonials. Do you guys think those are just completely made up?

[NYgirl]

There are a lot of VERY knowledgable people in here that will be more than glad to give you their two cents.  I am just answering quickly in case you are still reading and you know someone has written back!

How do you know that you have NO liver damage?  did you have a biopsy (bx)?

If you have NO damage then it sounds like you can wait a while until you get settled in before starting tx.  Of course your doctor knows best and none of us are doctors.

If you do "wait" please make sure to have regular testing done - you didn't mention your ALT and AST but with a vl of 13mil being high they would be useful to know.  You don't want to wait until your liver is really damaged before you treat.

And they do say that the earlier you treat after infection...the better for you.

Perhaps you can put down a bit more information in here and the smarty pants will help you out.

I just wanted to let you know someone answered and that we care.

Best of luck
Debby

[e2]

I had a liver biopsy and more recently one of those radioactive injection liver xrays. According to both of those I have no liver damage. I've also been vaccinated for Hep A and B. What is this ALT and ASD you speak of? That among other lingo / abreviations etc. I am not familiar with yet.

[couldn't think of a nickname]

If you are sure you have no damage, I would talk over the options with your doc, but you might be a good candidate to wait for newer treatments that don't include ribavirin, and might be much shorter in duration, especially if you are feeling well now. If VRTX's timeline holds, and into the start of phase 2 it has, they might have VX-950 approved in less than 3 years. 2006 has the chance to answer many questions about it, and data will start to flow very early in the year. Their modeling suggests VX-950 and interferon could shorten treatment down to 1-3 months. There are many threads on this site on VX-950, I would read them and do some research. Phase 3 is scheduled to start in 2007, and they have stated they plan to file for approval by 2008, and review time should be 6 months or less. This is the only drug in trials that I know of that the FDA is fast-tracking.

Again, it is only a suggestion, and it should be discussed thoroughly with your doc, but you seem to be in good shape so far.

Also, genotype is important. Geno 2 and 3 need half the treatment time or less than geno 1. Geno 1 is much harder to treat with current therapy. Good luck, and stay well.

PS: ALT is a marker of liver injury, AST is less specific as it can be elevated due to liver, muscle, heart, etc. injury.
Also, have them check your platelets.

[SurfThaNet]

e2: Welcome,

My Viral count is 53,800,000 there is hope. I just started treatment (tx) with little side effects (sx). Get more than one doctors opinion and do your research. Get your CBC (Complete Blood Count) too. That will tell you your ALT and AST along with other information.

Check out these sites:
http://www.hcvadvocate.org/
http://www.hepeducate.org/pe_test/pe_course_list.php
http://www.allabouthepatitisc.com/readytolearn/
http://www.hepatitisdoctor.com/
http://www.using-pegasys.com/

Do you know how and how long you have had HCV (Hep C Virus)?

I hope to hear back from you soon.

GIG,

Red

[bobbyullc]

LIVER DAMAGE IS RATED FROM 0 TO 4 WITH 4 BEING CIRROSIS AND 0 BEIND NO DAMAGE. IF YOU ARE ONLY A 0 OR A 1 YOU MAY CONSIDER WAITING UNTILL BETTER DRUGS COME ALONG WHICH HOPEFULLY WILL BE IN 2-3 YEARS. I HAVE HAD HEP C FOR 36 YEARS AND AM ONLY A 3(NOT REAL GOOD) BUT SHOWS THAT IT OFTEN TAKES A LONG TIME TO GET BAD.
IF YOU DECIDE TO TAKE TREATMENT YOU MAY CONSIDER TAKING IT BEFORE STARTING A NEW CAREER. ALSO FIND OUT WHAT GENONE TYPE YOU ARE. IF YOU ARE A 2 THE DOSES ARE LOWER AND TREATMENT ONLY LASTS FOR 24 WEEKS NOT 48 LIKE GENO 1.
ALT AND AST ECT. ARE LIVER CHEMICAL LEVELS AND ARE A GOOD INDICATOR OF THE CURRENT HEALTH OF YOU LIVER. SVR IS SUSTAINED VIRAL RESPONSE (CURED).
GOOD LUCK AND BE INFORMED. IT IS YOUR HEALTH.
SOUNDS LIKE YOU HAVE A GREAT LIFE IN FRONT OF YOU.
BOBBY
http://www.hivandhepatitis.com/2005icr/aasld/docs/111405_d.htmlOBBY

http://www.pegasys.com/basics/default.asp

[e2]

Thanks for the info. To answer your question I have a general idea I've probably had the virus for about 4 to 6 years.

[Magnum]

Absolutely stop drinking if you are doing so now. Also stay away from foods and vitamins with iron...

You may also ask your doctor regarding two supplements he insists I stay on. One is Sam-E, the other is Milk Thistle.

Good luck and get started on treatment as soon as you can, because you may be one of the fortunate ones that will clear once and for all...

Magnum

[mistybean]

I would not start interferon before or during a good job.  I  am working while on interferon and it has been a living hell. I work in outside sales and need to travel, etc. The Hep C drugs will effect your performance.  You asked what it is like  with Hep C and no interferon?  I have had Hep C for about 30 years with no interferon.   Most people  with  Hep C never go through the interferon treatment.   I was fine and would of been for many years to come.  If you have mild liver problems then I would not put on hold a good job to treat.  I choose to treat because I felt the odds were in my favor due to my genotype.  I also am 44 now and even though I have a great job.. I am at the age where career is not as inportant as it once was.  

Shot 22/out of 24 done.

Good luck to you

[andyarundel]

It is well known in the scientific community that the Hepatitis C virus is virtually indestructible and so elusive that developing a vaccine poses as an enormous challenge and progress has been extremely slow. Pharmaceutical companies turned their attention to Interferon based therapies to market in the mean time. Due to the fact that millions people worldwide are now infected with this virus, this market population represents a $6 billion per year industry by 2010. These interferon-based therapies, to treat people who have HCV, do not actually kill the virus. Ribavirin and siRNA's (small molecule therapies) don't either. I think any attempt to market them to the public as a `Cure' should be treated as fraudulent misrepresentation and dealt with as such. They are chemotherapy class drugs, components of the immune system and as such, very powerful in nature.

Our immune systems respond to a viral infection in a series of events, one of the first of which can be the release of interferons as a barrier in an attempt to block or slow the spread of the virus by interfering with the process of replication - Hence the name Interferon. Then the hunt is on by the rest of the immune system components to seek & try to destroy the virus. (Antibodies, NK-natural killer cells, T cells, ..) Quite unsuccessfully, I might add. This virus is incredibly elusive. It seems that after a year of interfering with replication, circulating virus' levels drop to below detectable amounts (<50 ppmu) and the virus seems to quit trying or goes dormant in `Responders'. However, 10 -15 year follow-up of earliest clinical trial participants/responders and samples taken
from them revealed a high level of relapse and low level activity in others. The virus RNA was still completely in tact in cells and capable of fully functional replication in all participants tested. Recently, highly sensitive electron microscopy revealed virion (virion: A complete virus particle with its DNA or RNA core and protein coat as it exists outside the cell. (also called a viral particle.) Particles embedded in tissue samples taken from cadaveric participants from multiple organs and tissues, which contain the entire code of the virus and are able to develop into fully functional and active virus. We have this virus and we are able to transmit it to others for life.
Interferon alphas seemed to be the most specific to this virus so Pharmaceutical giant Roche patented interferon alpha 2a and the other, Shering Plough patented IFN alpha 2b. Patients had to have injections at least 3 times per week (or daily) for 24 to 48 weeks.
Compliance was a problem because a lot of patients couldn't continue that long and would quit and consequently fail treatment. To make the therapy more convenient, both companies wrapped each molecule with a polymer (polyethyleneglycol – also used in antifreeze, runways, tires – for it's excellent coating and thermal dynamics capabilities) I'm sure a lot of you agree that our modern plastic packaging of our groceries or chocolate bars can be quite frustrating to open sometimes. It's a lot of extra work for our bodies to unwrap or break down the plastic before it can use the raw interferon inside. The interferon still builds up to therapeutic levels in our systems but the pegylated versions take longer to break down so injections are only necessary once a week. My queries to several large insurance providers suggest that close to 50% of those treating do not finish. Insurance providers are exerting huge pressure on the pharms to increase the numbers that complete treatment using the threat of placing restrictions on those who are prescribing. Review panels etc. are some of the suggestions I have heard to date to increase the numbers of patients from 50% of those treating to a higher number, as current treatments are very expensive, but do not at this time impact insurance providers formulary projections, as the number treating is an insignificant percentage at this time but growing.

Human Genome Sciences on the other hand, took a more compassionate approach to the patient and human body and did it more in a way that would be familiar and acceptable to the body and spliced the interferon onto the correct gene of human albumen. Albuferon™ is currently in clinical trials, shows fewer and less extreme side effects and adverse events, shows a good response rate even for genotype 1 with the added benefit of only one injection per month. It can circulate in the blood stream for a long time without breaking down, yet is readily available for use when needed. Albumen is produced naturally in the human body. It's quite nice, friendly stuff – (compare to egg white). Raw interferon can be like putting a crushed aspirin in your mouth – pretty shockingly bitter and harsh, but put the aspirin in a teaspoon of honey and it goes down quite nicely. Stan Shusbank and others working out of Princeton University formed a company Interferon Sciences, which did most of the work on natural production of interferon for HCV. McMaster University in Hamilton Ontario, is far along in sequencing a vaccine for HCV, but, one also has to reminded that what is referred to as subtypes are actually different diseases.

siRNA's are "small interfering RNA" (ribonucleic acid) or nuke – produced by our immune systems in some circumstances that, again, only interfere with the replication process. It is very similar to the virus itself, which is a single strand of RNA protein but the siRNA is harmless yet it plugs or uses exactly the same receptacles that the virus uses to replicate. You could call it a small molecule prophylactic. If the virus can't attach, then it can't replicate. Ribavirin collects in the liver, so any circulating virus' or the ones in the liver would come into close proximity to it and it would have its effect. It is still unclear how Ribavirin works and new discoveries are being made frequently. A few things that are known about Ribavirin are that it can affect almost any genetic material by inducing change or mutation. The virus seems to get looped into a constant mutation cycle until exhausted and consequently, too busy to replicate. Again, it interferes with replication. IF YOU ARE PLANNING TO HAVE CHILDREN OR ARE PREGNANT, DO NOT TAKE RIBAVIRIN.
I strongly feel that Activists, support workers and societies involved or concerned for people with HCV should be insisting that governments and Pharmaceutical companies focus their efforts on developing a vaccine and true cure for this virus instead of focusing on a perpetual market for expensive interfering therapies.

I've always believed in understanding situations with realistic expectations of outcomes. `Eyes wide open', so to speak. Tell it like it is. At least then, we can deal with it in realistic terms.

There are several goals in the treatment of chronic hepatitis C. They include decreasing replication of the virus, decreasing liver inflammation, and slowing the progression to cirrhosis. Stopping detectable viral replication is the main goal of treatment now, since it very likely results in decreased liver inflammation and progression to cirrhosis.

According to most physicians, a “sustained response” to treatment is an absence of detectable hepatitis C virus genetic material in the blood, six months after stopping therapy. Some Doctors, but few researchers equate this with a “cure.” Although not yet rigorously proven, it can be assumed that the persistent absence of hepatitis C virus in the blood indicates that inflammation in the liver has stopped, and potential progression to cirrhosis is no longer a danger. Recent abstracts presented in San Francisco ask the question as to how valuable the validity of red blood cell SVR testing is, as these abstracts concur with studies from Europe dealing with those with continued liver damage with those who have achieved the classic sustained viral response. As a community we need truth, not pharm marketing strategies to enhance our treatment choices. For individuals treatment is either one hundred % effective or zero % effective. There is some indication of fibrosis reversal, but only has been validated for a small minority of patients who have treated and recent abstracts have not had the controls needed to validate these studies, so in my humble opinion are just more pharm hype, that some members of the HCV community have as is so often the case taken and blown way out of proportion and delivered as fact.
I at times wonder who is worse in their evaluations, the pharms or those in the HCV community who do not have the capability or faculty to understand the difference between marketing and evidence based medicine and best practices currently employed in the treatment of HCV. It seems many have the Best in the field, the best on the planet as their own personal Hepatologist. It seems many may actually live in their Docs office as the information their Doc have given them would take hours of their time weekly to discuss all the situations those treating or suffering from HCV endure. A simple rule of thumb would be to disregard those who find the need to dump information on these boards when they use the “my Doc” is considered the best in their field style of preamble prior to the dumping of info.

[couldn't think of a nickname]

I have been on record as stating that Albuferon will likely replace interferon as we know it now in a few years. Albuferon and 950 would be a much improved tx, since it might only take 1 or 2 shots of it. The nice thing about 950 is that it only targets a protein specific to the virus, NS 3/4, and some doctors are on the record saying they expect a much better side effect profile because of that. That was stated before P1 results were out, and so far, it has turned out to be true. Long term, the goal will be monotherapy, and maybe fewer pills per day. I disagree that the virus is virtually indestructable, as many in here are SVR, and 950 has rapidly eliminated the virus at TID.
If you want to be technical, then it is true that no drug "kills" the virus. What the small molecule class does so effectively is, it sticks to the NS 3/4 target which is very, very tiny, uncoats the virus, and allows the immune system to destroy it. The half life of 950 is about equal to the virus, that is another reason why it is so effective.

[couldn't think of a nickname]

Silver is best used for jewelry, so I would wear it outside, not inside. Seriously, it can turn the skin gray, and there is no proof it works.

[andyarundel]

Next time you hear a doc say "cure", ask them to put their money where their mouth is, you will be surprised as to their responce. My info is is what is the best currently available, you are referencing the red blood cells, not white, which remain in the body many months longer than reds. One can watch the NS3 pagent as it grinds toward safety approval, my money is on a completely different approach to management of the disease. There are many researchers thinking outside the box so to say. Genetics with designed therapy for each quasispecies is where many are looking at this time, as current therapies are in the stone age with this disease.

[cuteus]

you still did not mention what your genotype is. #2 and # 3 require a shorter course of therapy and yield a better response than genotypes 1 and 4.  The medical community is split as to whether to call SVR(sustained viral response) a cure.  Some studies show residual HCV Rna in some SVR subjects and some show no remants of the virus. A new abstract shows the results of a follow up of 5 yrs on SVR subjects and found no signs of relapse. Other studies have yielded similar results. If the virus is no longer causing liver inflammation, you are cured of hepatitis. The presence of virus elsewhere has not been found to be of significant value as of yet. Relapse rates remain low in long term SVRs.  One thing to consider also is your age. It is easier to erradicate the virus and achieve SVR if you are younger and healthier.  The tx is difficult, but manageable for most folks, meaning that they can continue some form of everyday activity, including employment, housekeeping etc without severe interference from the medications.
I was able to work the 72+wks I was on tx, some  have to stop working.  It can be quite expensive if you do not have good medical insurance also.

[fresnoborn]

welcome to this forum. here, you will find people with different opinions but everyone is supportive and you will definetly find support here. finding out you have hep c can be disappointing but as you adjust and accept you will find yourself searching for answers and full of questions. everyone here will do all they can to help you find answers. as to whether to treat right now or not, it's up to you. some have stayed working while on tx and some have not. i have been a reference librarian for 15 years but i could not get up in the mornings on time anymore and i was tired all the time and grouchy so i took a leave of absence and am currently on temporary disability.yet, cuteus worked throughout treatment. as for side effects, each individual reacts to tx in different ways. if you decide to treat, you can tell your doc what sides you are having, if any, and he may prescribe you meds for that particular situation. some get by with just an over-the-counter pain reliever. one more thing, there are no doctors here just people who are thinking about tx, on tx, or not on tx or someone they know has hep c. you will find alot of information on this forum and you will learn alot. when i first came here i didn't know anything about this disease and i was scared to death. i just knew i was going to die soon, or so i thought. hep c is a slow progressing disease for most. welcome. come in, sit down, read all about us and join in whenever your heart desires.

[couldn't think of a nickname]

I stand by my info as well. Albuferon cannot do it alone, there is no question. To date, NS 3/4 is the best target, polymerase inhibitors don't work nearly as well, same with helicase inhibitors. I have also said in the past that someday drugs could be designed for the individual, but that isn't where we are now.

[couldn't think of a nickname]

I second that.

[cquest]

Just like crossing the street...be careful before you take that first step...watch...look...listen...then cross the street...DO NOT listen to or follow anybody's advise here without doing your OWN research and asking YOUR own doctor!

We are just people w/ Hep C and there are many many different opinions in here...and you know what they say about opinions....
Cin

[HCA]

You ask about testimonials for **** like colloidal silver.
Testimonials have been part of quackery since time began.
Assuming that a testimonial comes from a traceable source,you will find:
Patient took convential treatment plus quack remedy.i.e radiotherapy followed by some 'natural' cure.Chooses to credit nice natural remedy rather than harsh medicine for improvement.

Patient is high on placebo effect.

Patient believes they are in remission but do not take tests.Give credit to rhubarb enemas and die nine months later.

All the testimonials I have read for colloidal silver and HVC,I could break down in 30. secs.

Move on to the real issues affecting your health,upon which others have provided good information.

[e2]

Wow thanks for all the assistance guys. Have you guys found that symptoms like fatigue etc. can come from simply having a high viral load or do symptoms mainly come from liver damage caused by the  virus. To answer some of the questions from before I am 26 and right now I don't know which genotype I have.

[giddyup]

Hi e2.Im 40 yrs old and treated twice for the virus. I think it's great that you finished school and have job offers. I think the best thing you can do is find a heptolgist to look after your hepititus. Then enjoy your career. Don't let the hep c get you down. The treatment as currently availible for hep c is harsh. I wouldn't do it  right now given your situation. Yes you can get alot of informaton here.Try searching for the     " Janice and friends" site for good info. Just my $.02.        Good luck !

[debdeb47]

I absolutely agree that genetic tailoring to the quasi-species will  address the NR one sub-sub-group at a time, and maybe save others from pegasys/riba hell.

[friole]

Can't add much to all the info already posted.  Just a big welcome.  Sorry you have to be here.  My main bit of advice is to maintain control of your treatment.  Primarily, get copies of every single thing that has been done and start a file -- every lab test, every biopsy report.  I find it odd that the geno hasn't been determined yet -- so get that done.  Then like Giddyup said, find a good hepatologist to guide you and help you decide where to go from here.

There are a few on the board the same age as you.  One woman postponed law school to treat.  It is not so bad for a lot of us and awful for others.  Much luck to you.

Hey Fresnoborn - that is so cool being a reference librarian.  I think it would be a fastinating job.  Bet you are good at trivial  pursuit (or were until the brain fog took over).  I am sure you will be back at it after tx.

frijole

[jmjm530]

Andy said prev: "However, 10 -15 year follow-up of earliest clinical trial participants/responders and samples taken
from them revealed a high level of relapse and low level activity in others. "
---------------------------------

My understanding has always been that SVR -- as defined as being non-detec 6-months post treatment -- is durable in the 97-99% range.  Not sure if the 10-15 year follow-up study is contradicting those figures or discussing other issues like occult activity. Do you happen to have a link to the study in question. Thanks for any help.

-- Jim

[jmjm530]

There's no way to predict in advance how treatment will affect your ability to work on treatment.

Some of us have continued to work full time effectively, others had to cut down hours, and some have had to stop work altogether. Younger people seem to have lighter side effects so that stands in your favor.

Depending on your genotype you typically will treat for 24 or 48 weeks. If you do decide to treat, definitely have a back up plan for that period of time in case you have to temporarily cut down or leave work.

If you can't live with the possiblity of cutting down or leaving work, then you should seriously consider a watch and wait approach given no liver damage.

-- Jim

[andyarundel]

One can do as they please, but I might add that unlike many I do spend hours attending consensus conferences, dealing with the treatment of HCV. One person’s anecdotal opinion compared with the opinions of those who work in the HCV field should hold some weight when discussing the treatment of HCV. Truth however it is presented seems to be scarce in most support forums as most messaging has trickled down from pharm marketing strategies. Case in point is the notion that close to 50% of genotype 1’s achieve what is known as a SVR. This is utter nonsense and most within the industry parrot this as it is the gospel truth, even when they know it is garbage.  Many take the numbers from genotype 2 and 3 and parrot that close to 90% obtain a SVR after treating, but fail to qualify that statement with this is only true for a small minority of patients who have genotype 2 or 3. One thing this community is lacking is hope, much of that may be the effect of marketing strategies that in no way reflect the reality on the ground in the treatment of HCV.  There is not a word coming from the pharms dealing with post treatment disorders. For some reason they have no desire to discuss this topic as at the moment one or two of them are marketing their products to kids and those suffering from Hepatitis B. The word treatment has one single focus, interferon based medications. Few to date discuss the many manifestations of HCV and how it attacks a person’s quality of life, its impact on other organs etc.

Hospitalizations, length of hospital stays, and physician visits for HCV patients have increased by 25% to 30% per year since 1994. There is no breakdown as to the reason a HCV patient presented at a hospital, but from where I sit I can tell you many are treatment or post treatment issues. Quite frankly, I think Hepatitis C is less of a liver disease and more of a blood disease.  It affects so, so much more than our livers.  In fact, I think by the time we feel it in our liver, it has caused too much damage to our immune system to ever fully recover.  HCV needs to be reclassified.  It would be interesting to find out how many Fibromyalgia sufferers have been exposed to HCV.

Blanket statements similar to yours do not enhance the debate that this community dearly needs. If one where to hear me speak, I have one basic theme, that this is our disease, we own our individual copies. We own it, why give it away? Unlike the AIDS movement who took back their disease, and own it lock stock and barrel, it seems most within the HCV community are content to let the pharms set the agenda and keep ownership of our disease.

[jmjm530]

Thanks for the quick response. I was hoping the article wasn't talking about a high "relapse rate" in the traditional sense where one becomes detectible via PCR. Again, from all I've read/heard SVR is durable in the 97-99% range.

That said, the fact that HCV RNA can persist at levels under the radar of commonly used viral load tests certainly has iimplications that should be studied.


-- Jim

[jmjm530]

All very interesting stuff and I appreciate the added perspective that you, DD and others have brought to the discussion. Please keep coming back with more because we can often get lulled by the same ole' lines of thought.

Like you say, all too often we get most of our info from drug company trials and their participating doctors which among other things don't seem very motivated to study the long-term effects of the combo treatment itself.

That said, SVR still seems the best game in town for those with significant liver damage and studies do suggest that SVR can often halt or even reverse fibrosis. As to the implications of any occult virus, that is still to be determined.

As to those with little or no liver damage, I hope they will weigh all points of view before embarking on treatment. Like  you suggest, I also think the risks of combo treatment itself are often underplayed by the hep-c medical establishment.

-- Jim

[andyarundel]

I do agree with your thoughts with SVR's. I have treated with various interferon products 3 times. With the state of my liver, would I treat again is another question one can only truthfully answer if the need to treat was present?

Current studies in Toronto based on genetic markers to predict a successful treatment outcome, hopefully will have some impact on the liaise faire treatment protocols used at present. While this liaise-faire approach may have been appropriate in earlier times, our highly competitive economy demands a more organized and responsive approach to treatment options. Insurance reimbursers are at this time freaking at the cost of treatment combined with the 50% of patients who fail to complete treatment. I am worried that if this trend continues, treatment options for those who really are in need will be difficult to access. At present the costs do not bear significant weight on insurance companies’ profit margins, but they are squawking now. All the numbers and percentages, statistics etc. are from a base of thousands, whereas this list serve and many others there are individuals, real people, with families, employment and quality of life issues. Pharmco economic models are now being designed to reflect individual issues, but at present they do not factor much into the equation. At the end of the day, what I am saying in a nutshell, is that interferon based treatments and those who sell them have hijacked HCV. When one speaks of treatment, they automatically think of interferon based medicines, not the social, economic burden HCV has placed on this community. Not the many other medical manifestations those infected suffer with. One could say there is a huge elephant in the room, but most will not acknowledge its existence.

[jmjm530]

We are indeed flying (or let's say injecting :)) in the dark when it comes to tx outcome.

A couple of weeks ago I was talking to my doc about how many weeks would be optimum for me to treat. After going back and forth about the 36-week rule and the 46-week rule I (didn't even know that one existed LOL ) -- almost as an aside he said that what I really needed was a special blood test to determine what kind of t-cell response I was having.

We didn't have a lot of time to get into the test, but his basic point was (in my mangled words) was that some people during treatment have a profound t-cell response and some only have a spiked response to the interferon. The test can differentiate between the two.  Those with spiked responses will tend to relapse. He went on to say that this particular test is only available in a couple of research labs around the world. The tone of his voice was telling -- we just don't really know with what we got to work with today.

But whether it be more study into pre-tx genetic predictors, or more sophisticated early treatment testing like with the t-cells, anything that helps take the guesswork out of tx outcome would be a blessed relief to all of us. It's really hard to plug into the risk/reward equation when we're somewhat uncertain on either.

-- Jim

[andyarundel]

This is a blanket statement. "I guess we should just disregard completely what you so eloquently dumped on this forum when you make statements like"....

The statements I made are to the best of my recollection true, and based on many years working in the HCV community, attending and chairing many HCV conferences. Working closely with drug companies and researchers in the HCV field. If you care to debate any of my opinions, by all means please do so. If you are suggesting I just found this stuff on the internet..well enjoy that thought.

By the way, what do you feed your elephant?

[couldn't think of a nickname]

I think we should be careful not to point to any one study, as there are always those that contradict. Some of the studies cited above are very small, and we know nothing about those in the studies. I would point out something interesting that VRTX has said, and that is they believe they can drive the virus down to below 10 copies IN THE BODY-they first said blood, then quickly corrected themselves. That is a question I have for them, but I have not had a phone call returned yet. One thing that should also be pointed out about small molecule drugs, is that they have a better chance of getting inside compartments than large molecule drugs do. One of the big problems with lyme's disease is the blood/brain barrier-a tough thing for any pharma. Most drug molecules are too large to penetrate that protective barrier.
I would point out before we remain doom and gloom, is that I would like to see those same studies done with the PI small molecule drugs.

[andyarundel]

Now your a doc treating 1000's of patients. What next?

Anyway, I'm a touch busy, have to feed the Corgi's and check on Charles. Being the Queen of England does have its moments.

Have a wonderful day.

[couldn't think of a nickname]

I think he said 100's

[cuteus]

it is so true that we can find a study for almost any point we want to  make, and they can be contradicting in content. I do agree with Andy that HCV should be reclassiefied as a blood infection more so than a liver infection> HCV is more systemic than presently thought.
One of the studies presenting lower SVR rates in private practice, stated using a length of tx of 29 wks, maybe that plus undercompliance can account for the disparity between theirs and the drug co data?
Then you get the recent study of following up long term svr and the actual SVR rates as measured by the serum rna;
http://www.medpagetoday.com/InfectiousDisease/Hepatitis/tb/2152
and the one I like to read about durability of SVR with no findings of HCV in intrahepatic tissue, plus many other studies showing HCV is not persistent
http://www.natap.org/2005/HCV/010505_02.htm

I guess you can find a study to back almost any claim

[couldn't think of a nickname]

The issue of if there is remnant virus and whether it is important is a good question. I have posted before that the body has many viruses in it, especially EBV (Epstein Barr), it is just something you can live with. Someone in here (maybe Cuteus) has posted links on the extra-hepatic manifestations improving or clearing with tx, like mixed cryoglobulinemia.
I do agree that HCV is the "ignored" illness. Just check the FDA web site. They have all kinds of links dedicated to HIV, but NOT ONE to HCV. I am not objecting to the attention given elsewhere, I just think that HCV deserves it too. Also, there is only one drug in development for HCV that is currently being fast-tracked, and that happened last week with 950.

I would like to see the same studies quoted today 10 years from now with the new class of small molecule drugs. I have a feeling the data might look different. If so, this raises another point: IF there is remnant virus in some compartments like the CNS, AND it can lead to morbidity, AND small molecule drugs can get to these places, (quite a list of assumptions, I know) THEN would it make sense for those who got SVR using current SOC to treat briefly with the newer class of drugs?

That is putting the cart WAY before the horse, but since we are debating it, may as well throw it in there.

[couldn't think of a nickname]

On the topic of percentage of those achieving SVR, for some reason, I have always doubted them even before reading studies. There are so many ways to skew that data. In the clinic, the setting is optimal for achieving the desired results. Compliance is MUCH better, there are no issues with insurance paying for meds, dosing is probably more consistent time-wise, etc.
One criticism of VX-950 is that it would be taken 3 times per day, and that a once per day drug is much easier, and will be easier to comply with. Also, you don't have to worry about taking every dose at the precise time. As a side note, they haven't ruled out lesser dosing (I guess either in total pills, or maybe twice per day), but that can be an issue, less so the shorter the tx would be. Since 950 so far is best in clinic, some may wonder why other drug companies would START to develop a new drug. The above scenario is exactly why. Once per day with good safety and efficacy is the ultimate, and so far, nothing has shown it can do that. If anyone could develop a drug to do that, it might be king of the therapies.

From my viewpoint, IF 950 and interferon could clear me in a month, I think I would do my very best to make sure I could comply. Can't always control it though.

[andyarundel]

There are some looking at the issue of combo interferon treatment and permanent side effects from a legal standpoint. This comes from Canada where those infected with HCV via criminal activity have settled with the Governments, the Red Cross and all those responsible for injuring and murdering thousands of Canadians. With these settlements the issue of long term effects of interferon combination treatments is an issue that the lawyers are focusing on at present. If this issue does make it to open court, it would be of interest to see what the pharms have in their files on this issue. In a sense it is a double edged sword as this matter would delay much needed monies going to victims of this tragedy who need compensation now, rather than having to wait another ten years, while these matters drag through the legal system.

My wish is that Docs treating the disease, would treat the patient, and rather than using the cure word, would place much more emphasis on the informed consent portion of considering treatment. At present, in my opinion, most who hear the cure word, pay little attention to the side effects, be they short, or long term.

At present there is not much data on the effects of these treatments. There is some info from Europe, where the pharms have a much less influence on treatment messaging. Side effect surveillance is slim to none and slim is on vacation. England's NICE has a 800 number where patients can report side effects. In North America there is too much of a problem for Docs to report all the side effects patients present, and no surveillance methodology for long term effects

[jmjm530]

CTON said prev: "On the topic of percentage of those achieving SVR, for some reason, I have always doubted them even before reading studies. "
========================

I have two minds on this. On one hand there's the selection process used in the studies. But on the other hand many of the trials limit the use of "rescue" drugs, the number of PCR's, and fiddling with the meds, doses and tx time.

-- Jim

[iceboy]

Welcome to the forum e2. as you can see it�s great fun at times. Educating our self�s is the best thing we can do and the accumulated knowledge and opinions that flows here are great.

I have had HCV probably for 23 years + and I have no liver damage and low viral load. I decided to try treatment now (I�m 41 year old) because I had other physical symptoms like joint pains that where slowly incapacitating me. I do not expect to be able to work at all during treatment.!  I have lived very exhilarating live, but Iwe had quite healthy life style as I stopped drinking when I was 23.

There is relatively little known about the virus because it�s so new in our books, and when you think of fx homogenizing of milk, we don�t even know the full effect of that on the human body. There are bound to be new drugs on the horizon, but it�s also going to be years until we know if they have adverse effect. All the best to you, and stick around.

[couldn't think of a nickname]

It is interesting that you have low vl, no liver damage YET you have symptoms. Just goes to show you, the numbers don't always seem to add up.