What is the latest treatment available?

[GTBill]

Hi All, new to the board. Have had HCV for over 37 years. I'm 58. Just got a liver biopsy (through the jugular). Stage 3 fibrosis w/ extensive ridging. Mild portal hypertension. Blood platelets hovering around 88,000. Mildly enlarged spleen. I had Interferon treatment in about 1996 for 48 weeks. Then in 2000 (I think) I tried Interferon with Ribavirin but I got a cough so bad I had to stop. Have done nothing since concerning treatment. I don't have stamina for any physical activity which is a real problem at work.

So, my question is, what is the third drug they are using in studies that is showing a lot of success? My doctor sort of wants me to wait until that drug is allowed by FDA but he says I can't wait too long. He is worried that tx may lower my blood platelets to a dangerous level.

[GTBill]

OK, Gee74, this will be painful. My symptoms...where to begin? A little background. I was infected in 1971 or 1972 (I'm positive about that). I started getting symptoms in 1974. My symptoms are mostly related to physical activity although some seem to be related to food. If I live a totally sedentary life I am pretty symptom free. But in my line of work that is not possible (at least not for long).

Worst symptom: Here is where I have frustrated myself, my wife and several doctors over the years. I can't accurately describe how I feel. I've had way more than one doctor tell it was in my head (before I was finally diagnosed in 1995). When I over-exert (normal people would call it a mild work-out) I cannot sleep well that night. My body kind of vibrates, I'll have a headache and I'll have a "bad" feeling in my gut. The next morning I feel sick in my abdomen. I can't describe it but I feel as if I have been poisoned. Am I nauseous? Not really and it doesn't involve my stomach. I can eat normally. I can always eat normally. So, I feel exhausted with a serious blah feeling in the trunk of my body. I also feel light headed but usually not dizzy. The nighttime headache is usually gone after my shower. My ability to think clearly is somewhat impaired. By the way, the blah, I've been poisoned feeling, runs from my abdomen all the way to my head. It seems connected (well, I'm very sure it is connected).

I have other symptoms but the above is the most common and the most debilitating except for when my liver "goes south" and I start throwing up. That really ***** but has only happened 3 times in the past 10 years (and never before that).

Does ANYONE out there share these symptoms? No doctor I've ever told them to has heard of anything like it. Sorry for the length of this post. Now I have to go lay down.

[GTBill]

"There seems to be more serious rash and skin problems associated with the Telaprevir. "

Thanks Trinity. Tx has all kinds of problems for me including the fact that it tends to lower platelet counts. I could handle a rash if I knew it were temporary. But I have enough serious skin problems now.

[Gee704]

GTBill - Would you mind sharing your symptoms? I had been having digestive problems and leg weakness for years. Test after test no problems. Finally my new GP ordered Hep testing as my AST/ALT had been slightly elevated for years.

Hep C was +. Genotype 1 with a viral load of 1.440 million. Liver biopsy revealed mildly active chronic hepatitis with marked bridging fibrosis with occasional nodules. Also the liver appeared cirrhotic in the subcapsular zone but was less nodular in the deeper part of the biopsy. I believe I contracted the virus in 1977 from a transfusion.

The liver specialist said I had a window period of a year to make a decision to treat. After a year, she felt my platelet count would go to low to treat although it is normal at the moment. I too am very interested in the new PI's but I am very concerned about sx's. I am single and take care of myself. If they are bad and I am unable to work, it wouldn't make sense to treat only to be homeless.

I feel more educated reading the boards as there is never enough time to discuss with the doctor. There are so many issues to conceder.

[Trinity4]

When stage 3 is reached (that is me 3 close to 4) we don't have the time to wait.  The PI's may hit the market in 2011 but that is not certain as was told by my doctor in Atlanta.  Because of my advanced liver disease my hepatologist suggested if I do not clear the virus with SOC (72 wks)  wait 6 months and then he would like to start me on Infergen.  I can say  (at this point) I will not do that.  72 wks on Interferon is enough for me.  More than likely I will wait for the PI's to hit the market and I have considered the risks of waiting given my advanced liver disease.  I'll play the odds and hope they work in my favor.  
There seems to be more serious rash and skin problems associated with the Telaprevir.
Hopefully, they will work that before it hits the market.  That may be something you will want to take under consideration since you have existing skin problems already.
Good Luck and hope you find the best possible treatment regime for you.
Trinity

[GTBill]

Wow, thanks for all the comments. I have tried to get into NR trials before and haven't made it yet. I will probably try treating again soon. I didn't tolerate last time because I had a cough I couldn't shake and got to thinking that the odds it would work (35%?) weren't looking too good. I think I could have toughed it out if I had really tried. Now that I really have to do something I will make a larger effort. Also, the body changes over the course of ten years.

One other fly in the ointment is that I have a pretty bad case of psoriasis which is an autoimmune disease. I think my immune system is cranked up quite a bit because I haven't had a cold or flu (I do get flu shots) in over ten years despite being around dozens of sick people including my wife and son. In fact I haven't been sick from any kind of illness other than my liver. But that is bad enough. I have many symptoms (it's not a silent disease with me).  

[Redhead1950]

I've just begun the last treatment available in studies!  I tolerated the Inf/Riba very well during that 48 weeks and even sustained a pretty good response at the 3rd month level.  However, up here in my part of the world no one was doing any follow up PCR tests say at 6th month etc. and WHAM it was all over and I was left floundering as a NR and could not find any further information about what to expect.

Then, out of the blue just about 4 weeks ago, I was asked if I would participate in this latest trial for NR's and away I went.  Found out then that my liver was already a 4/4, so I was at the beginning of end stage liver disease.  Plus my viral count has skyrocketed.

I didn't have trouble with my platelets the first time around so here's hoping

[Max60]

I wonder how well any of the new stuff will work for those who couldn't tolerate SOC IF/riba? Everything I've read points to the sides being even more intense with the addition of a PI.

I have a friend who tried to retreat on a Teleprevir trial. . . she didn't last a week due to serious sides.

Conventional wisdom is to retreat. . . .a whole bunch of times if necessary. I, for one, wouldn't do it again if I hadn't been able to get through it the first time.

sincere  best wishes whatever your decision,

Max

[orleans]

This is some info on what I am currently (available "off  label")  treating with. Our stats are very similar except I have not txed before. UND @ 2 weeks, we'll see.
http://www.hivandhepatitis.com/2008icr/easl/docs/050608_b.html
http://www.hivandhepatitis.com/2008icr/aasld/docs/120208_a.html
http://www.medhelp.org/posts/show/338944
http://www.medhelp.org/posts/show/342441
jerry

[mkp13]

See if you or your doc can find a clinical trial for either Telaprevir or Boceprevir.  It's not yet clear which will be the better drug.  Telaprevir allows shorter treatment but has worse side effects for some people (though not all).  The problem you'll hit is that most of the trials require you to be "treatment naive".  You need a relapser or non-responder trial.  Those are more rare.

[AnotherJourney]

There are some CTs out there for these drugs and others that you might research. Think there are others on this forum who can maybe give more details as to what conditions requiredt  to get in a trial.  

YOu can also go to clinicaltrials.gov to find out what and where various CTs are.

[GTBill]

I'm genotype 1. 2011? Hmm, might have to try Peg and Riba again. Thanks for the info.

[AnotherJourney]

Attached is a link that discusses what I know to be the two promising "third" drug in the fight to treat Hep C. These third drugs are protease inhibitors  and will round out the current pharmacutical cocktail of Peg & Riba. It is my understanding that boceprevir and  Telaprevir are both in a race to hit the market by 2011. What geno are you?

http://www.medscape.com/viewarticle/583136