worried about my husband

Friday is our big day. After 4 years of waiting we finaly said its enough waiting. The specialist is starting my husband on pegesis or something like that loll. Last year blood result showed that he as protein in is blood. 3 years ago they diagnose him wild mild inflamation (inflammation) and again the specialist was saying wait. Well by coming here it did not make sense for us to wait longer. I ask the doctor "how can you be should he can wait?" He said because usualy people take 20 years before getting very sick. Well 4 years ago he told us that no one can say how fast it can be. For some its slow for other's it fast. Now please do you understand something that we dont understand? We are a bit scared that the doctor is not saying evrything we should know. How long did it take for you to get sicker? My husband as the genotype 1a please tell us what you thing?

[cuteus]

the other day I was reading a very eloquent post by one of our most vocal members in this forum about that exact subject. I was hoping to be able to incorporate it in a recent post.  THIS one is it! His nickname is Tnguy and here is what he responded to a newbie a while back:

"Posted by TnHepGuy_ to moeymitt on 03/16/2005
Current protocol is for any chronic Hep C patient to receive a bx every three years (or less if called for) to monitor the health of the liver. It would be to your benefit to have one done soon to gauge what the current status of the health of your liver.
    As far as geno 1a being "very difficult to treat", the success rate (to begin with) for someone in your shoes (assuming you still have little-to-no- liver damage) would be (depending on your age) in the 50-60% range. And to me, those odds are pretty darn good - especially knowing that every year that you don't treat, those same odds continue to diminish and the chances of your liver being damaged continue to rise. And then there are all the other non-hepatic manifestations that arise as a result of having a virus replicating by the billions in your body constantly.
     My question for any doctor who advocates the "watchful waiting" approach is: what exactly are we waiting for? my liver damage to increase? my SVR odds to continue downward? other Hep C-related conditions to arise? Or, are we waiting for the so-called "something better" to come along? That's one that doctors seem to throw out rather often. And you know why that is? Because they have no idea when, how, where or if that "something better" will ever arive - and it's easy to dangle a carrot out in front of patients and tell them that with the current tx "the odds aren't good", or "the medications are too tough" or, you-name-it. I've been hearing this same set of garbage now since I failed tx 12 years ago. And you know what? The better drugs are already here. My odds (as a geno 1a) back then were less than 10%. In taking the new combo tx, I started out with them closer to the 60% range. Those are the kind of odds I can live with - very comfortably. And my liver damge was very mild and hadn't progressed between 1992 and 2003. What did change in that time frame was that I got older. And with age, my chances of reaching SVR were continuing to go down. And my odds of liver damage were continuing to go up. So, when a doctor tells you that you should wait for something "easier/more tolerable" than the current medications to come along, ask him "just how long do you suggest that I wait for the pharmaceutical companies to perfect this drug and for the FDA to approve it?" And also ask if he can guarantee that this drug will make it through every tough hurdle of the research, trial and approval stages - and just how long do you think all of that will take? Be sure to ask if he knows what the new SVR odds for this approved medication will be for geno 1a's. And ask him about your liver in the meantime - should you just do some more "watchful waiting", perhaps? And ask him about all the studies that show declining odds with age - and increased liver damage over time - and the non-liner aspect of that damage (meaning that it can go from slow progession to fast progression without notice). And be sure to quiz him on his knowledge of all the extra-hepatic maifestations that are associated (and being further discovered every day) with Hep C, and what having the virus that much longer means in those terms? And ask him if he thinks that this new drug will replace interferon and ribavirn (since these are the current "non-easy, non-tolerable" drugs), or will these two drugs still be part of any tx that happens to show up (as all the current researchers say)? Ask him about Amantadine, Zadaxin and a host of other drugs (used in combo with the current tx) that have never lived up to their potential. And ask him about the protease inhibitors and how the research on them has been stymied and significantly slowed by this rascally RNA virus.

Back in 1997, I called Dr. Jay Hoffnagle - the lead Hep C research doc at the National Institutes of Health. In that converstaion I asked him about protease inhibitors and what he expected to come from it. He told me he fully expected there to be something ready for FDA approval by 2002-03. Dr. Hoffnagle is truly on the front lines of Hep C research. If someone like him can be so completely off base on Hep C drug research and approvals, what might that say about the average doctor telling his patients to "wait for something better to come along in the next few years"???
TnHepGuy

It's terrible to see all these doctors out there tossing out a bunch of BS just because they are either lazy in their Hep C knowledge or completely ignorant of it. Perhaps the most important phrase that can come from a doctor's mouth are the words "I don't know". With those simple words a patient can realize that they are with someone humble enough to NOT give out just any old kind of answer under the sun. Too many times a doctor will give out an answer - some kind of answer - in the hope that the patient won't think that the doctor's knowledge is lacking, and therefore wouldn't be a "good" doctor. Sometimes it can be actual work to look for and find the right answer and maybe the doctor doesn't have or want to put in the amount of time to do it. Maybe the right answer is to refer the patient to a different doc and the doctor isn't humble (or knowledgeable) enough to do it. Or maybe the doctor feels too rushed and just wants to give the patient the insurance-driven amount of visit time - and out the door the problem goes. Or maybe they feel it's best to tell the patient what they believe the patient wants to hear - or what the doctor falsely believes the patient should hear. The list goes on-and-on-and-on.

Its' too easy to just parrot a standard line. The tough part is for a doctor to do the actual work of learning the right answer or being humble enough to say the words "I don't know - I'll try and find out. And if I can't, let's send you to someone who may know".

Implicit in those words are, "I'm caring for you the best way I can. I'm working with and for you. Your health concern and any future treatment are too important. And, I'm not about to throw you some answer just for the sake of it."
TnHepGuy"

[cuteus]

Tnguy just posted his negative 3 month PCR, not too long ago.
I will be posting my 6 month in about two wks. I was also a 1a with mild damage, but getting older. The time to treat is when age and low damage raise your chances at SVR.
Don't be too scared, treatment(tx) sucks and you want to quit every day, but you don't because it is doable. stick around for support.

[Kanzou]

It looks to me as if your doctor is one or all of the following:
1. Disinterested in providing the proper medical care
2. Ignorant of how to treat Hep C patients
3. Soaking you for the insurance money instead of refering your
    husband to a gastro/hemotologist who knows about the HCV
4. Prides himself in being the BS'er around
5. Prepping for retirement
6. All the above

Don't walk, run from this madman. What, is this guy still in kindergarten? Let's see, if we put it off, the desease will go away by itself.

Go to a liver transplant center/hospital. They deal with hundreds if not thousands of HCV infected people. If you're not close to one, call the nearest one to you and ask to be referred to doctor in your area "trained" by the liver guru at the tp center. Go the UNOS web site for resources.

Good luck.

[walk]

Thank you so much to everyone for all this information. You're a great bunch! I believe we need to know as much as the doctor to make sure that we receive the right treatment. It can be very stressful not knowing what's going on.

[dharmabum]

The response from cuteous is a bit harsh on the medical community.  Away from that, however, one might want to note that just today Vertex Pharmaceutical hosted a conference call to discuss the results of the phase 1b mono-therapy trial for their protease inhibitor, VX 950.  Go to their web site, vpharma.com for a replay.  Very, very interesting.  I am going to try to get into the phase 2 study, probably later this year.  In any case, the latest press release is below:

"Vertex Pharmaceuticals Reports that Oral Hepatitis C Protease Inhibitor,
VX-950, Dramatically Reduces Viral Levels in Phase Ib Clinical Study