Genotype 1b returns after 11 years

Has anyone out there had tx (interferon only) for Genotype 1b and it returned years later?  My husband has 1b and received tx 11 years ago (before we were married) and we just found out today that it has returned.  He has had periodic testing done up til now with no problems.  His vl is 11 million but his liver enzymes are good.  He is having pain in his right side and so will get a ultra sound done tomorrow.  He is also having the genotype test again to make sure he did not get exposed to a different genotype.  Oh, and talking about another liver biopsy.  Right now I feel overwhelmed!  They may have to do tx again.  

[Trinity4]

Really?  I don't think I've ever heard of the virus returning after 11 years of UND by RNA PCR.  I've read some studies that showed the virus returned after around 1-1/2 yrs but I also think the patients had cirrhosis.  Also, without ribavirin the virus in most cases can't be sufficiently suppressed.  Do you know the sensitivity of the PCR's used after the initial SVR and during the periodic testing?  If indeed your husband attained a true SVR I'm more inclined to believe he was re-exposed to the virus, hence the viral load but I suppose anything is possible.   I've heard many strange things on this forum.

Your husband will have to treat again if he wants to eradicate the virus.  Newer drugs called protease inhibitors are expected to be released sometime next year.  They will be used with interferon and ribavirin and the success rate is around 75%.

Sorry about the bad news.
Trinity

[Katy63]

Sorry, I don't know all of the specifics of 11 years ago.  I do know they told him 11 years ago he had no liver damage.  They are very shocked too so they will test for a different genotype.  They did say that in May 2011 there is supposed to be some new tx options with higher success rate.  I feel so bad for him, he is taking it hard.

[nygirl7]

Sorry I have never heard of it returning after that long either.  It is possible he was never really rid of it but generally a viral load will rebound high very quickly (high enough at least for detection).  You should call the doctors office and have them fax over all the PCR test results....then follow up with biopsy etc. Sadly 11 years ago they didn't have the combo treatment which has helped many of us - we are all hoping that the new drugs are out by the summer but if his liver damage is too vast he might need to treat now with just the combo, there is no guarantee they will be out so it all depends.

Good luck.

[evangelin]

That is very disheartening news but you can at least take comfort in the fact that he cleared the virus once before so probably will do even better with the new meds coming up.   I know very little about it but I remember that some medications that suppress the immune system can cause a re -infection to take place if there were low amounts of the virus still lurking.
No matter how it happened, I'm sorry you have to deal with it.  Medhelp can be a very supportive place with lots of experienced people to help you make it through.
Best wishes,
Ev

[GFRY]

very sorry to hear about that , i think he were re-infected, any way keep us updated cause really lots of people in this forum will be devastated if they knew it can come back after such long period.

[Katy63]

Well, found out today that Ab sonogram came back good.  Did not see anything unusual with his liver.  Woohoo!  Don't have the vl and genotype back yet but one of his liver enzymes should have been between 10-35 and it was a little high 40.  Not sure which one yet but I plan on getting the paperwork for reference.  Have a ways to go but I was happy about the sonogram.  Any input?

[Boobert]

40's good. Good news on the sonogram. I'm very curious about the reinfection. It's either one of two things, He never cleared the first time or he was reinfected. Keep us posted.

[nygirl7]

He's going to get a biopsy right?  Ultrasound just really shows you if you have tumors or cancer but the biopsy will tell you how much liver damage he has developed. A very useful tool in deciding if he is going to treat again right away or wait.

[Katy63]

Dr. talked about getting the biopsy, but waiting on vl and genotype.  They said he was cleared the first time and that is why the Dr thinks he may have gotten reinfected.  They are pretty baffled right now as to what is going on.  They said it is pretty much unheard of what he is going through after this long of time.  He is having pain in his side which I understand can be a symptom of liver damage.  They also wanted to make sure nothing else was going on with stomach gallblader (gallbladder), etc.

[blondie717]

   I find news like this frightning..But I wish You 2 Well.

[GFRY]

good to know his sonogram was fine , now geno type is the most important by which we may be able to know if he really was re-infected

[Katy63]

Can you have cirohisis (sp) and have low liver enzymes?

[GFRY]

unfortunately yes, but if he has cirrhosis it would have appeared in the sonogram in which appears the liver has shrunk with no smooth surface

[desrt]

If the genotype test turns out a match, ask them if they will do further sequencing of the virus, This can sometimes tell if identical genotypes came from diferent sources.
This is so unusual I imagine they may do it anyway.

[Trinity4]

There are usually other blood abnormalities when cirrhosis is present. Abnormal levels of bilirubin and albumin; and abnormal coagulation parameters along with decreased platelets.  If the the albumin, total bilirubin, creatinine, platelets, prothrombin time and INR are within normal parameters he more than likely does not have cirrhosis.

Trinity

[eureka254]

Certainly disheartening news for you and your husband about the infection -- sorry to hear that you're dealing with this situation. It's good that his ultrasound is clear, and it's important to know that ultrasounds have good sensitivity in ruling out lesions, but they are NOT reliable for detecting the presence of mild cirrhosis.   Just as high liver enzymes do not mean sustained liver damage, normal liver enzymes are NOT sufficient to rule out cirrhosis (as Trinity points out, other blood markers are better indicators than LFT levels), so it may be wise to consider a biopsy if there is serious concern for existing liver damage or cirrhosis.

Re-infection a more likely explanation if your husband truly had sustained viral response (SVR) after his treatment 11 years ago.  The fact that he may have had no liver damage at the end of his treatment does not necessarily mean he sustained viral clearance.  Re-activation of virus after SVR is rare, but not unheard of, but it's usually in the setting of serious medical interventions or significant compromise of the immune system.  Hopefully your husband has not had to deal with any such issues, but it would make a "return" of hep c virus highly unusual.

There's good likelihood that treatment come next year will be considerably shorter and more effective than what was around 11 years ago, so don't despair.  Though you're here for less than happy reasons, welcome to the forum, and I hope you find the information here helpful. ~eureka

[Katy63]

Finally got results back today on genotype.  It is 1b the same as before :-(  We are scheduling a liver biopsy in January even though did not find any lesions, dark spots, etc on sonogram.  Dr said need to do biopsy before tx anyway.  They want to wait until May for new treatment though.  Thank you to all for your responses and comments.  We are so disappointed right now.  

[jusjames]

thats a sobering post!   really makes you wonder

[Trinity4]

Katy,

I'm about convinced he never really attained SVR the first time.

Trinity

[Katy63]

They say he did...  that is why they are shocked.

[jusjames]

did they test beyond the 6 month test ?  

[GSDgirl]

Also, I am thinking that 11 years ago the PCR did not test as low as it does now?  Please correct me if I am wrong but what if the test 11 years ago only went down to the 640 (or something like that) number and he had 400 copies?

[jusjames]

thats what i am thinking ,

[nygirl7]

Yes when I first started the common test was only down to <615 and that was only what 5/6 years ago.  I totally think he was never really UND they just didn't have the testing back then to prove it out.

I am curious too if he got a 6 month test or even a one month test?

[Katy63]

I was not around then but from what I understand he got regular testing and even yearly over the last years.  I am wondering... earlier this year he had outpatient surgery and has had several problems since then.  Surgery went well but the healing didn't he has had to be on several pain meds, steriod or cortisone shots. I am not sure if that even makes sense.  Any thoughts?  

[nygirl7]

Well if he did have regular testing and they always showed up negative then he was reinfected somewhere along the way. Could have been a surgery instrument that wasn't properly sterilized or if he had a transfusion - nothing is perfect and something could have snuck through.

Still think he should get a biopsy to see where he stands before deciding to wait and see IF/when they new meds come out. Just in case.........if he treated 11 years ago then it was probably just interferon and not ribavirin as well. If he cleared then on the interferon adding the riba should make it an easy bet he would clear again.

[GSDgirl]

About a year before I was diagnosed I had flu like symptems a few times and it took me down and it also took me longer to recover.  I do not know if it was related to the Hep C but I had never been so sick like that.  

[willing]

Katy: sorry to hear the news. Late relapse, like spontaneous clearance of chronic infection, is one of those rare events that is well documented medically  but unusual enough that it's rarely posted here. Agreement down to the subtype is not conclusive but certainly in agreement with relapse. The course of steroids associated with surgery is more likely the culprit than the instruments. All the best.

all: this  does make a case for keeping a vial of pre-und serum frozen away somewhere..

[mikesimon]

I'm not convinced that it's relapse. I don't know the steroid dose but I don't think it was anything like a bolus intravenous course. I've been on steroids several times with no relapse. It just sounds weird to me.

[GSDgirl]

I was on major steroids for bacterial pneumonia IV in the hospital a month or so before my last PCR and it had absolutely no effect.  I was still SVR

[Trinity4]

Some people have a hard time zoom zooming in on the facts.  They could say the reason the virus returned is because they ate bostomcream or apples000 pie.  I have oooreally learned that there is no justification for the multitude of identities (I mean reasons) why some can't substantiate random remarks.  

[Trinity4]

Uh huh....

[mikesimon]

What happened?
My post is gone.

[nygirl7]

I see your steroid post and thought I had posted after it but I could just be in a brain fog mode.  Very strange dealings ;)

[mikesimon]

Apparently the deletion(s) didn't merit explanation.