Treatment Gone Horribly Wrong!

My husband recently completed a clinical trial of 44 wks of SCH 503034 (boceprevir) and 48 wks of interferon and riba. His baseline viral load was 8,000,000 and his biopsy showed no liver damage. He had more than a two log drop at 12 wks and was UND somewhere between 20-24 wks and finished treatment UND. He relapsed by the 4 wk followup and his VL was 2,000,000. On his second followup (12 wks) they said his VL was 100,000,000! Why would his VL increase so much so fast? Will a VL this high damage his liver faster? I had no idea that treatment could actually worsen his disease. I wish he had just left well enough alone.

[gauf]

This is rare but can happen. I started as stage2/3 and a VL of 250,000. I toxed twice and was UND at 12 wks, relapsed both times. At the end of tox 2, my liver quickly went to a stage 4 and VL shot up to 4 million. It was devastating.  One theory is that when completing tox, the immune system just does not know how to come back online quickly enough to nail any lingering virons. Kind of leaves the virus an opening to go nuts.  The high VL is not the big concern here but his ALT/AST levels are very important. These indicate how much damage is being done. If his levels are stable and his liver grade/stage are low, he can take time to recover.  I am very sorry this happened and know what it means to suffer for nothing, and the fear of perhaps making things worse. Did he have a biopsy?

[evangelin]

I'm sorry you have to bear the disapointment of a failed tx.  We have too.  I have been a scared wife myself.  My husband has had a viral load that high one time but once I
started being really diligent with feeding him a super healthy diet and started some well selected supplements, it went down to something more normal.
The best advice I can give you while you are waiting for another drug is to go to Gauf's member profile here on med help.  If you just search gauf, one of his posts will come up.  Just click on his name in blue under his post and it will bring up his profile.  Gauf has recorded the supplement advice from a phenomenol hepatitis Doctor/researcher that has been to the forum from time to time.  My husband already had cirrhosis by the time he was diagnosed.  We have done exactly what this Dr. (known as HR) has said to do and I can't tell you what a difference it has made.  You can go to HR's profile and read everything he wrote and you will have the advice of a very rare expert .  My husband was too sick to even try treating again until he took HR's supplement list for about 8 months.  His labs came back so improved, he is startng treatment again , this time adding Alinia.  Even if he clears the virus, he will continue on the supplements indefinitly,  Some should be discontinued during tx and Gauf's profile includes some of this info too.
I wish you both the best and will say a prayer for both of you,
Ev

[lolitriqui]

sorry to mix into this thread, but i'm also a 3a and am shocked reading your relapse figures; should you have been taperng of the meds???? it's interesting the spoolup time for the immune system i can imagine this can happen; i'll see my doc tomorrow and will ask her about that; your first tx, did you have to stop at 12 weeks for the anemia or was tx supposed to be only 12 weeks?  i'm just wondering...... considering we are all just labrats maybe the first short tx time gave your bug the edge; just trying to make sense of it; i hope you'll beat it this time you seem prepared; ciao

[meki]

Hiya scared.

I don't know the answer - but I do know that viral load amounts and liver damage do NOT correlate across the border.

They can be indicative - but they don't always mean damage --- if the viral load is high - or low.

I would wait for a biopsy to determine if he has any different damage before "freaking out"...

How is he feeling?

How is he feeling body-wise?

How are his AST/ALT Bili levels?

How is his mental status?

Some people are slow responders, others non-responders.

If he went UND - he may need to go on the Teleprivir study - (check with Andiamo1 about that one).

Some folks respond - others don't.

I don't know about the high elevation on the viral load. BUT --- I do know that the doctors will deal with it fairly rapidly. Checking his CBCs etc.

Hugs sweetie - sending you hope and love.

Meki

[gauf]

First tox was scheduled for just 12 weeks at that time. They thought G3's were easy to treat. HA!   I absolutely believe "now" that tapering down at EOT while adding lactoferrin should be part of everyones tox regimen.

[redrodeo]

Go have another check. That could easly be a lab error. I had one test May 1st that said my vl 18ml. But I took another test a few days later and it was still neg. The test they use are easily contaminated.
Red

[zazza]

8 million = log 6.9
100 million = log 8

If you put your husband's viral loads in log form, the difference is not as great as it seems when in numerical form. Here in Sweden, the doctors and nurses often only use log form nowadays. It makes the viral loads easier to compare.

The virus kind of takes its chance post tx, but I bet things will calm down as more time passes. Don't regret having tried to beat the virus. It just takes more rounds for some of us than for others to win this war.

[Magnum]

Very interesting point, and I may have the answer. In one of my posts, I mentioned the doctor had me overdosing on Infergen. It nearly killed me and caused me to be jaundiced. But at the same time, it was killing the virus! Unfortunately, it was a race to see which would be killed first, me or the virus.

Hopefully he will recover well, as I did. I also want to mention that months AFTER quitting the near death Infergen overdosing, I was at 360,000 viral count, the lowest in years. So, the doctor mentioned that maybe the overdosing did some good as well as bad. My prayers are with your husband...

Magnum

[HectorSF]

There really is nothing to worry about and I would doubt that the treatment has worsened his disease. Unless he had cirrhosis to begin with and his cirrhosis is starting to decompensate.

There is no reason to worry about his viral load (VL). The VL doesn’t equate to the degree of disease nor does the amount of virus have any relationship to the amount of liver damage.

There is another post right now where someone's VL went from 10 million to 200 but never reached undetecable. Although it seems like a big drop he still has no chance of clearing the virus because he did not reach an undetectable amount of virus. VL is one factor in many that affects our response to treatment. Genotype has a much bigger impact success of treatment and so does cirrhosis.

VL is used by the doctor to measure how you respond to treatment. That is all.
Viral loads also tend to stay the same over a period of years if you use the same test to measure it. Also the PCR test cannot tell the difference between a VL of 8 million and 40 million. So 100 million is not that much more.

Michell Shiffman MD -  Hepatitis C:Epidemiology, Diagnosis and Treatment

"It is important to realize that HCV RNA assays have some inherent variability. The assays are only able to measure virus within a sensitivity of plus or minus 1 half-log unit. What does this mean? It means, as illustrated in this graph, that the assays are unable to differentiate an individual with 1 x 106 copies/mL of HCV RNA from an individual with 1 x 105 copies/mL of HCV RNA. One must keep this in mind when measuring HCV. If the virus appears to be changing by approximately 5-fold, it may just be because of this inherent variability in the assay, and not an actual change. Thus, changes in assay must be greater than 10-fold in order to be clinically meaningful."

Good luck!
Hector