geno type 1b viral load 2million

[Brenda01]

Hello fellow heppers,  Right now I'm very scared and confused. I found out I had hep-c in 1992. I had my first biopsy then and was a 0-1 level with no scarring. My viral load was about 1/2 a million. I had no signs what so ever, and still don't. My Dr back then told me that due to my geno type 1b, there was no point in treatment as my odds were not in my favor. He also felt that in about 10 years they would have a better treatment for geno type1.(still waiting for that to happen!) My Dr went on to say that I'd probably die of natural old age before my hep-c would get me! I followed his recommendation, and had a biopsy ever 5 years and blood work once a year. Over the years my viral load went up to one million and stayed in that range, and my biopsy's showed minimal scarring that brought me up to a 1+not quite a 2 with some minor bridging. That was in 2006. Now less then a week ago, my viral load is at 2 million, and my biopsy results came back today at level 4!!  I've been told I really have no choice but to start treatment. My Dr told me that my blood levels looked great, my ALT and AST levels were only up slightly. Has anyone out there had their levels stay low for almost 20 years then jump to a 4 with absolutly no physical signs? Has anyone been at a level 4 with geno 1a or 1b and NOT taken the standard treatment? Or maybe traveled to another country that offers different treatment? And finely, has anyone tried any of the newer trials with any good results? Please, if anybody who is at a level 4 with geno type1b and has had good results please offer me some hope.Thank you all for any advice you can offer me.

[Brenda01]

First, I want to thank you all from the bottom of my heart for so much information,caring and hope. I have a phone conference with my Dr tomorrow and feel I'm better prepared to ask him for more tests or clinical trials. You have all given my a lot of hope, and again thank you from the bottom of my heart and liver.

warmest regards,
Brenda

[IAmTheWalrus]

I had a similar disease progression. Many here have treated while in Stage 4 and there have been some remarkable SVRs. Willings suggestion for trial sounds good. Early phases show RO5024048 to reduce viral load dramatically in a short period. Be sure and read up on it so you understand the risks. The study referenced looks like it has no placebo arms in it, either. - Good Luck!

[willing]

PS : sorry, I misread your post and thought you had treated back in '92. Since you are tx naive you are eligible for the Phase IIb trial of r7128. Of the current  trial options, this is definitely one of the most promising. Look for trial NCT00869661 on clinicaltrials.gov.

[can-do-man]

Great advice from willing, as for your last part of your post, I'm also a 1b stage 4 and tx in the boceprevir trial, i am now SVR (cured) so it can be done. Hang in there and don't give up.

cando

[RobertBeWell]

The biopsy might be wrong... perhaps they just hit a "bad spot" ? Sounds odd that it progressed so fast.

Also, as pointed out, scarring and heavy fibrosis is commonly accompanied by at least SOME markers that will be found in the lab tests.

I second the recommendation of a second opinion.

[willing]

some good news is that (1) your viral load (VL) fluctuations are almost certainly insignificant and in no way indicative of deterioration (+ - 0.5 log units is generally considered noise, and in any case increased VL does not imply increased damage)(2) there is no particular difficulty to treating 1b over other geno 1 subtypes (3) the prospects for treating are improving rapidly (4) there are many here with stage 4 who have successfully gone to SVR.  

The not so good news is that stage 1-2 to  stage 4 progression in 4 years. Before committing to starting tx now, rather than waiting for the 1st gen PIS (about a year) it's worth confirming that diagnosis. Rapid progression happens but is rare, more common in a setting of hiv/hcv co-infection. Stage 4 is the  beginning of cirrhosis, and cirrhosis is almost invariably marked by additional indicators. Here's a list of things to pursue:

- if you can obtain slides from the previous bx take those and your current ones to another pathologist for a 2nd opinion, tracking progression (if possible, handle delivery of  the slides yourself so the previous reports are not included to avoid bias)

- ask for an ultrasound measuring spleen and portal vein diameter; advanced fibrosis is often accompanied by an enlarged spleen, or the US may detect nodules indicative or cirrhosis

- check your APRI score (AST/platelet) ratio. Low platelets or an APRI > 1.5 are  indicators of fibrosis

- check your bilirubin, albumin and INR scores. Elevated bilirubin, or INR or low albumin are other common indicators

- since you are in FL, you may be able to have a Fibroscan, a device which measures stiffness of the liver and samples a much larger area than a bx (not yet FDA aproved in the US).  See thread
http://www.medhelp.org/posts/Hepatitis-C/Where-can-I-get-a-Fibroscan/show/95550

- a simple, composite, serum based test such as Fibrosure can also be used to confirm advanced fibrosis.

Sorry if the list is long, but before jumping into tx it's worth investigating that diagnosis. Either way, it's time to treat, but the results of the above will help you decide if the time is soon, or *now*.