living longer with Hep C

My wife who is a nurse say's I will most likely live longer because I have been taking better care of myself now that I know I have hep C ( I don't hammer myself into the ground every Friday night anymore) She say's she wouldn't do the TX again lucky for her she SVR  I diden't. Still she is usually right on medical issues. The interferon is really hard on the body and as many of you know can produce many long lasting sides and long term is still a unanswered question.
So I am still waiting for the new TX but more unsure if I will do it. Had hep C for 35 yrs as of last Biopsy was grade 1 stage 2 . So I just may ride it to the grave.

[GrandOak]

There is no "new" TX in the pipeline that I am aware of, just another additive to the cocktail with either the Protease and Polymerase inhibitors.

As a stage 2 you may be able to ride it out, but I would highly recommend close monitoring, which I'm sure you plan to do.

I know of a few folks who have been taking the same course, in fact not even attempting TX once, for 10 or more years now who have showed little progression.  But regular biopsies and testing has been part of their lifes to stay on top of it and if progression begins to increase are considering as a possibility if no new TX presents itself.

The downside is that I have not seen anything which even closely resembles finding a different means of trying to eradicate the virus from our bodies.  Everything I have come across seems to be focusing on making the current TX mroe effective and/or easier to attempt.

[Willy50]

I agree with Grand Oak's advice on staying up on your labs and staging.  The virus can cause some people to progress rapidly.  Further, some people may also develop other HCV related diseases, symptoms, maladies.

On the other hand....I think that the new treatments ARE a different means of treating the virus; they act upon *inhibiting the replication of the virus*.  I think fairly soon we will see that the virus can be dramatically prevented from replicating.  When you consider what an EVR means..... (at one point a 2 log drop at week 12, also considered a complete response by week 12) some of these drugs are capable of producing a near 4 log drop in days as monotherapy.  When stat-c twin polymerases are combined (a protease inhibitor and a polymerase inhibitor) the viral decline should be impressive.

The role of IFN and RBV will probably become diminished and at some point possibly discontinued.  It will probably be around for a while to augment the new treatments, but it's role may soon diminish.  Already it appears that PI's will halve the time of treatment for many people.  We will see what happens when twin PI's are used but the toughness of chemo could quite possible be diminished if the dosing were able to be reduced to IFN and/ or riba.  Vertex has mentioned that their first twin PI trial may commence this year (2009).  IF the Phase 1 trials go well (probably 1a and 1b trials for days.... then a 4 week trial) we could see a 2a FDA trial on the horizon quite soon; possibly even 2010.  Telaprevir was able to reduce viral load as monotherapy about 3.6 in 4 days and VX-222 was able to do the same in 3.8 in 4 days (I don't remember specifically, but give or take a tenth of a percent).   Josh Boger, then CEO of Vertex said the results when combined should be both additive and synergistic.  

There is a lot to be worked out of course, what the best combination of drugs will be; can either riba or IFN be reduced, removed from TX?  What are the optimal dosages?  What issues will occur with side effects?  What are the issues with cross resistance in failed treatments?

I mention the brother and sister drugs produced by Vertex...... but there may also be other and better drugs that could be used in combination with either drug, or competitors drugs that could also be excellent when paired.  It will be a great problem to have at some point; many more effective drugs for treating HCV.

best,
Willy

[SnoWav]

by new TX I am referring to the VX 950 cocktail with a shorter exposure to interferon. For me to retreat with the standard TX my doctor said 72 weeks with a 30% chance of SVR,  I don't think I would expose myself to that even if it did cure me. Thanks for chiming in Willy and oak I have seen you around for quite awhile.

[teabefree]

wow...interesting view and i am on the verge of going the drug route, happy with Milk Thistle, levels are down, changed habits and wasn't really symptomatic before this was discovered, all after lyme, now i am being anlyzed and suggested to take this drug.  I rarely get sick, i mean rarely, am healthy inside and out and ma afraid to mess up the chemistry.  ????

[nanaviking]

I also chose not to treat with the traditional hep treatment.  Mainly because I am genotype1a and the odds of the treatment being effective were low compared to a much higher chance of long term side effects such as autoimmune diseases caused by treatment (the doc doesn't tell you this before treatment but do your research on sites such as Center for Disease Control, National Institute of Health and many more and you will learn that the treatment can cause you more harm than good).  I decided that why lose the quality of life I have now to the side effects of the treatment with such a low chance of success rate for 1a .  At first my doctor poo pooed me but after a few years of using Milk thistle and other natural herbs, eating a more liver friendly diet, my numbers and health have improved greatly and this last appointment he finally admitted that perhaps I was right in chosing not choosing to treat.  
  Not just my hep numbers have gotten better but my cholesterol, sugar, and other numbers have improved too.  I do have a BP problem partially due to Portal hypertension from fibrosis and partially from extra weight.  I have managed to keep free from many of the side effects of hep but the doctor does regular testing and an annual CT scan of my liver, kidney's, pancreas etc since having hep makes one more susceptible to cancers.
   It comes down to the fact that it’s your life and nobody cares about it the way you do. Doctors are great and necessary but they are not gods and cannot possibly know everything and know your body & lifestyle like you do.  I always research what the doctor tells me or any prescription he gives me etc before taking it.  I've actually been prescribed stuff I was allergic to when the doctor knew I had the allergy.  Thank God for a good pharmacist!  Yes I still go to the same doctor because he knows me and the thought of starting over with a new doctor just doesn't make sense either. They all are human, not all of them graduated top of their class and not all of them have time to keep up with new stuff coming at them so fast.  Another thing is that a lot of the stuff coming at them is from the drug companies which are motivated by profit first, health second.  The bottom line is do your research and watch out for your own health as best you can with the assistance of your doctor and pharmacist (and a good herbalist).  They can help you in your decisions but you should make sure you are making a totally informed decision not just doing what somebody (even a doc) just tells you to do).

[newleaf09]

I hate to be a wet blanket (easier said than done...it's rained here for a month), but I was asymptomatic and nothing showed on my ultrasound at all.  I felt fine, charging along as usual.  I had a biopsy that revealed cirrhosis.  I always had low cholesterol and found out that I had enviably low cholsterol because it is made by the liver and my liver was too damaged to produce higher levels.  Things are not always as they seem with HCV.  Hope you guys are keeping close tabs on everything, at least as close as is possible.

[justme53]

I agree with newleaf and I was very pro alternatives earlier until I was dx'd with Stage 4/ cirrhosis. This doesn't mean that I am now pro tx, but I do take a stronger stance in not resting our laurels on LFT's and feeling "good". Especially with portal hypertension and being overweight...even a little.....it matters!!!! I know one can live with cirrhosis for many years with a healthy lifestyle, but just as easily can one slide from a compensated liver to a decomping one.

This post insn't meant to be a scare tactic, but it concerns me when people drop the ball because the feel "OK". I did too back then, now I realize I was just adjusting to a new "normal". Progression can be very insidious and surprise the helll out of some of us.

good luck in your choices...Pam (41/72)

[nanaviking]

Yes, I understand what you are saying and have regular checks with my regular doctor and also with a specialist.  I am about to have another liver biopsy to check measure progression of the disease if any from the last biopsy.  I do have to keep tabs because of the portal vein fibrosis and some recent nodules on my liver. (blood markers don't indicate cancer and during recent surgery the surgeon took a good look at my liver and said it looks pretty good)  What I read about bleeding of the esophageal varices is very scarey but with Geno type 1a odds of positive response is so low compared to the much higher odds of the treatment stimulating an immune system disorder, it just doesn't seem to be worth the risk at this time.  I'm not ruling out that at some point that balance might change.  I'm hoping that I can hold out until the trials that Vertex is doing are finish and that treatment becomes available since the testing they have done up to now show much greater sucess rates for 1a.  

[scratchinghead]

Is it one of the symptoms of HCV that you can type a lot more and lot faster?  :)

[nanaviking]

Thanks for sharing and helping me realize I shouldn't slip into complacency,  I know I can use the denial tool really well and I'm also very good at procrastination so sometimes I need to hear what you are saying so that the 'feeling good' doesn't fool me.   I have an appt with the specialist soon and will have the treatment discussion with him but still hope I can hold out until the Vertex treatment becomes available.  

Oh and to Scatchinghead; this is a discussion forum, discussion takes words/typing.   I value what I learn here and what people reply to me.  A good reply on their part requires them to know a few things about my HCV experience.   Also maybe somebody can benefit from my experience.  That’s a good part of what this site is about.   I have learned from them, unlike your waste of time, unkind statement.   If you don't like reading the posts then don't.

[mikesimon]

" I always had low cholesterol and found out that I had enviably low cholsterol(sic) because it is made by the liver and my liver was too damaged to produce higher levels.  Things are not always as they seem with HCV."

This statement is not supported by facts. There are plenty of patients with high cholesterol who have severely damaged livers. Take NASH or NAFLD patients for instance.
Recent research points to an HCV/lipid relationship whereby HCV results in as lower cholesterol. Once the virus is eradicated the cholesterol levels often increase. This appears to be unrelated to liver histology because cholesterol increases are seen soon after clearance and before significant histological improvements are seen.
The liver doesn't only produce cholesterol - it filters it and reduces it.

The low cholesterol many HCV patients see is related to the virus itself - not the liver histology. Low cholesterol is seen in patients whose liver is in pretty good condition and once the virus is eradicated they are likely to see a change in their cholesterol level - upward.

Mike