Wondering if I made a mistake...

[klb6]

Hi all.  I am geno 1a and my VL started at 37,000 when first diagnosed July 2012, my VL was 75,000 Jan 2013 before I started treatment.  I have not had a biopsy and believe I have had this since 1982 or 83 from blood transfusion.  I started Riba and Interferon on  Jan 25th and then to introduce victrelis at week 4.  One week after starting, my billirubin went from .7 to 2.4 and Dr was concerned.  It did go back down the next week to 1.6 and my Ultrasound showed no blockage, normal liver.  I was not able to work for the time I started trtmnt due to extreme weakness, nausea and being dizzy.  After looking into short term disability and realizing it only pays 60% of my salary and I have to pay my insurance plus all the added med expenses including the meds, I decided I would not be able to continue treatment.  The Dr told me if my billi hadn't dropped they would have had to stop trtmnt anyway and they would have to watch me closely as it was likely it would rise again.  So we stopped and have been told that time is on my side with my VL being so low and the Ultrasound showing normal liver size.  I will continue to have labs done to keep an eye on it, and will try again with the new meds that are coming down the line.  I know this could be 2 years or more.  Do you think it was a mistake to stop trtmnt and wait?  I'm just nervous that by waiting I may harm my chances of SVR by letting my VL count raise higher and start causing damage to my liver where as now my Dr says my liver enzymes are just slightly elevated and so most likely I only have slight liver damage.  Your thoughts are appreciated.  I only did 12 days of treatment and will get my lab results in a few days to show if it affected my VL at all.  Thanks again.

[ceanothus]

I agree with the others that viral load doesn't say anything meaningful about liver damage, and enzymes are very poor predictors too. I know that because my enzymes were only slightly elevated for years (in the 50-70 range) and I thought that meant I had minimal damage. Then I had to have major abdominal surgery for another upper GI problem and the liver transplant surgeons who performed it saw my liver. They said it looked just as bad as the ones they discard during transplant surgeries. The biopsy they performed confirmed cirrhosis. I was shocked. I'd had the virus since a transfusion in 1986 and had cirrhosis by 2004. Now, as for the fibroscan, it's true they are uncommon here, but I believe there are other alternatives that are roughly equivalent that involve a special kind of MRI. I don't know the details but when I asked my hepatologist at Stanford if they offered fibroscans he said they didn't but they had this other test that was roughly equivalent. I think you need to really push for a better evaluation of your liver condition in order to know if time is on your side or not. I hope it is!

[klb6]

oh wow...did not know this abut the scan...guess I won't be getting one.  I will still inquire about it.  Thank you again for your replies...I am very thankful for this forum and pray for all of you fighting this disease!  Head up and positive thoughts for now!

[Advocate1955]

I agree with those above. VL has nothing to do with liver damage, so you have no information about your stage of liver damage. Therefore, you have no way to know if you made a good decision about stopping treatment now and waiting for new medications to cone out. Without that info, you are taking an uninformed risk.
Advocate1955

[rivll]

It's not surprising that your Hepatologist didn't order a Fibroscan because
fibroscan's are not generally used in the U.S. There is one at Mt. Sinai Hospital in NYC and they are also used in Canada and Europe.

I am no expert but I think it is unlikely you will have cleared the virus within the short tx period...you were not yet undetected were you?
You have a very reputable Dr. and as long as you stay in touch with him, I am sure he will  have you treating appropriately. Hopefully you have time to wait for the new oral drugs in a few years.
All the best

[klb6]

Thank you so much.  I did not start any PI's as I didn't make it long enough.  My billi base was 0.0 - 1.6...I think and mine jumped to 2.4 but was down to 1.6 before stopping treatment.  I feel I have a good hepatolgist (Dr Paul Kwo), but wonder why he didn't suggest the scan...I will be calling and asking tomorrow.  I don't have any other issues besides the VWD and thank you for the links.  My AST jumped to 70 and my ALT to 72, these have both gone down also, but still considered a little high.  I am still having issues with nausea, headaches and now back pain again...:(

I did have some confusion also in the beginning as I was told my VL was almost 250,000, but after talking with my Hepatologist, found out that wasn't correct at all...it was 35,000 and then 75,050...but that came from 1st doc that diagnosed me...not sure what they were looking at to get it that wrong.  Should have my new VL count by Friday to see if the 12 days did anything for it, but know that since I only treated for 12 days - it will be back.

Thank you again and I guess I just have to have faith that time is on my side and I made the right choice.  I will be getting that scan to make sure.

[Idyllic]

Here are a few links where you can read about Hepatitis C

From HCV Advocate
(Fibrosis/ HCV viral load does not appear to have much effect on fibrosis)
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Fibrosis.pdf

Here is a study on HCV treatment & VWD
http://www.ncbi.nlm.nih.gov/pubmed/11328286

and another
http://www.ncbi.nlm.nih.gov/pubmed/15644045

[Idyllic]

Greetings :)

You  treated for 12 days on the Peg and Riba and did not take a protease inhibitor yet? If so it may not be too late to do the research and go through some of the normal steps when determining whether to treat.  It doesn't help that many doctors do not offer HCV education or training or mentally prepare you with what to expect.  The first time I treated I did not realize my doctor was not the wisest choice for me until I joined the forum and learned the SOC (standard of care) for treatment for genotype 1 HCV.

It feels like there is a giant chunk of information missing in this account. Do you have other conditions for circumstances that are not mentioned besides VWD?

To start find a Hepatologist in your area. Get copies of all your medical records and take those with you. I am not sure how you doctor determined "slight damage." There are noninvasive ways to assess fibrosis.
http://www.medscape.com/viewarticle/707762_2

A viral load is not really an indicator of how damaged your liver is. With Hepatitis C a viral load pretty much only matters when you are treating. It shows how you are responding to the meds. A friend is stage 3 fibrosis with a very low viral load.

This is info you will want no matter what you end up doing.
Once you have more solid information about how far the disease has progressed you can determine what you would have wanted to do.

Once you have a more cohesive picture of your health and treatment options you will have the chance to do the research and planning part. This means you would have time to arrange time off, lining up short term disability (which works if you have a doctor on board) or just coordinating your schedule so you have the support you need and/or don't have to work on your bad days.

It took me time to get everything ready for treatment since I knew I did not want to *have* to work. Furthermore even when things are going smoothly triple therapy can be time consuming what with labs, doctor appointments and the medication regimen.

___________________

There is not enough info in your post for me to interpret what happened with your treatment but there might be for others.

How far out of the reference interval were you. I only ask because while these values vary from lab to lab the reference interval for Billirubin on mine (LabCorp) is 0.0 - 1.2 mg/dL.

Also it helps to know you other base line values to see how you were responding to the meds.

Yours is a complex post so be sure to check back. There are many others with knowledge, experience who will respond with different insight and perspectives. Hopefully this will give you a more vivid picture of Hepatitis C and treatment options.

Best of luck

[Tekelcat]

VL can be a predictive factor in estimates of how likely it is someone will reach SVR. But it's just one factor among many factors. And I think when it might be factor it needs to up around 10 million or more???? But VL goes up and down a lot. in the last 5 years of my 30+ years of HCV infection my VL have been as high as 11 million and as low as 1.4 million, and the 11 million came before the 1.4 million. So just live healthy (we know that stress and regular alcohol use trigger the virus's copy cycle so it makes more version of itself and that many more mutations).

Have you not had your liver staged at all? If you have a bleeding disorder, you need a Fibroscan. You really need to do that if you can. It will tell you a lot about where you are at and how much time you might have to play with. ALTS and ASTS (liver enzymes) do not always reliably tell the story about the state of our livers.

Did you start the Victrelis? You know if you've treated with a PI, the current protocol is no more PIs?

But remember, you made the decision that was best for you at the time. It's past and you can't change it.

Good luck.

Vivian

[klb6]

in case asked, I have not had a biopsy due to my bleeding disorder (Von Willabrands).  He feels confident that I only have slight damage at this time.