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?

[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.

[iceboy]

Welcome to the forum e2. as you can see it

[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

[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

[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.

[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.

[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]

I think he said 100's

[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 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]

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?

[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]

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]

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

[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

[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]

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

[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

[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

[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.

[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.

[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.

[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