Remission 6 yrs./Now Relapse/now What??

I Did the Rebetron/Combination Therapy 6 years ago,and stayed in remission the whole time...Life was great,even with all the "Aftereffects".Alot of memory gone,short and long term,etc.Now...my Doctor just told me that the routine bloodwork  from my last visit,that gets sent to the Mayo...says that I am no longer in remission,*#$%&?!!!!!!  Ihave been reading alot of the subject matter in this forum,and I kid you not... it was a great comfort to know that you people are there with your opions,ideas and excellent info.This disease is hard enough, but harder still... is to try and find anyone who understands....thanks.If anyone has relapsed like me I would like to know if or what they plan,next? To try the the "Peg" treatment? Will the docs even LET those who were like me,at an undectable level,and in remission for so long....even try the PEG? Thanks for listening.And I hope that everyone out here is aware... there is NO CURE,not yet...only TREATMENTS.

[beamishboy]

scrued,chewed & tatooed-dang!!! that  suxs bigtime...Any reasons for relapse??- major illness,drinking,coke,speed; stress factors that would lower your general health & well being?.. sorry to see your post-Truly!
honey-remission but not eradicated -between the idea and reality lies the shadow..too scary huh?  i still wish yu a GOOD MORNING!

[FlGuy]

Sorry to hear about the news. You must have thought this was all behind you. There have probably been a lot of changes to dianostic tools in the past six year, but I really don't know.  If you recall back that far, do you know the test and when it was administed that revealed that you were clear of the virus?  Unless re-infected in some way, maybe the virus was not copltely eradicated back then.  And, what test did the doc perform recently to determine relapse?

[mikesimon]

I don't believe that 6 years ago the sensitivity of the tests was nearly as sensitive as they are today. I am considering that you might not have achieved serum clearance but the test wasn't sensitive enough to detect the virus. Which new test showed virus and what is your viral load and genotype? Reinfection would likely be of a different genotype so if you have access to your old test results this issue could probably be resolved. Regardless, I would think that you'd be a candidate for pegylated interferon and ribavirin. Mike

[friole]

So very sorry.  Glad you found this forum - there is a wealth of knowledge and support here.  I wonder also about the sensitivity of the old tests.  I also wonder if you merely tested positive for the antibodies now.  Once you have had hep C you will ALWAYS test positive.  So did they run a PCR test or just a screening test (elisa?).

I would not give up hope yet.  I would think "routine" bloodwork would not include a PCR.

frijole

[who_dis]

I'm with the last poster.  What test did you have that showed you relapsed?

(My husband has been clear for several years, but they still do a PCR every year with his routine blood work. So a PCR may have been done routinely.)

I'm sure it's possible to relapse, but it isn't likely.

[honey11]

I sure am sorry to hear this. Is it possible that you got reinfected?? I just can't imagine after all this time that it could just reappear.  Could you give us a little history about geno,,,biopsy...etc....

[Snookmiester]

I tend to agree with Honey's assumption in asking whether or not you where reinfected. The chances of the same strain of virus coming back after being undetecable for 6 yrears is slim. In fact, you might be the ONLY person to date with such a claim. You should contact a few of the leading hepatology centers to be evaluated. Try, Dr Schiff, Cecil, Jacobsen, etc.. These guys would love to see you, because again what you are sugessting is unheard of.
Cecil himself commented in a publice forum that with all the thouseands of individuals he has treated over the years, he has not yet seen a single relapse from anyone of them, past the one year undtecable PCR.....You would be a first my man.
Get some further testing, in particular a genotyping to see if in fact you are infected with the same one. You might have possibiliy been reinfected as suggested before.

[fresnoborn]

I am so sorry to hear that you have relapsed. I can understand. I would get retested if it were me. Good luck to you and keep  me informed as to what's going on. Have a blessed Thursday :)

[DoubleDose]

What was the "routine bloodwork" that was done???  I doubt that it included a PCR after 6 years, because after a year or two the doctors no longer like to continue doing the PCR, if you have been SVR.  I also think the insurance companies do not want PCR's done after SVR has been documented for two years.  So, if you are just going on LFT's markers, that is, elevated liver functions, then the results could be caused by other factors than HCV.

When you achieved SVR, what sort of tests did you have done at the six month post-tx point?  Did they use a qualitative and quantitative PCR that was ultra-sensitive, down to 5 or 10 copies?  How many sensitive PCR tests have you had done since you finished the tx over the past 6 years?  (I am not speaking about liver function tests, but highly sensitive PCR's).

Also, as has been asked, have you had any major medical events in the past 6 years, or used IV drugs, heavy alcohol, immune system modulating medications, etc??????

This is a RARE event, and does not seem to be happening to any of the other thousands of people who have become SVR over the last fifteen years or so.  Is there any chance you became reinfected through some risk related activity:  IV, transfusion, surgery, heavy dental/oral surgery, tatoos, etc????

I would request several highly sensitive PCR's immediately (Qual & Quant)as well as a genotype test, to determine whether it is the same viral genotype as in the past.

Please follow up with the forum, so that we can better understand what has happened, in your case.

DoubleDose

[who_dis]

I can't speak for everyones routine tests, but my husbands' include a PCR each and every year.  Mostly for his peace of mind, but insurance has always paid.  I think he'll probably relax at about 10 years out.  But for now, he still lives with a bit of dread about HCV relapse, even though his docs say it is very unlikely.

[Kalio1]

Sorry that happened to you. Did your doctor call it a relapse? It sounds like reinfetion not relapse.

[cuteus]

child; please don't go generalizing too much before we know the particualrs of THIS case.  This is ONE case only so this statement goes a bit too far: "So let me get this straight, all who go through this treatment can get hcv back after 6 years of being in hcv free?" The use of the word ALL is not accurate, since as you just read in other comments, relapse after a yr of negative PCRs is very RARE.  We can't expand it to include everyone.

scrued: I repeat exactly what doubledose asked.  Tests performed AFTER finishing treatment, sensitivity included.

[NYgirl]

While this is absolutely horrific information - posting to a forum that you haven't been posting on before to people going through treatment yelling THE SKY IS FALLING...might just not be the right thing to do.

I can totally understand how upset you are and I would be too.  

Please realize though there are people who HAVE been cured and while you are upset...saying that nobody is or will ever be is just a bit selfish.  You are ONE case in a world of LOTS of infection.

Thanks.

[cuteus]

How are YOU feeling?  you have so much more on your plate than I do, I hope you find comfort somehow, each day that dawns. TY for asking, I am always basically the same, ticked off that Winter is coming and feeling it in the joints!
stay well and a big hug to your son

[GrandOak]

So sorry to hear of your relapse.

I noticed you mentioned sending work to the Mayo.  If that's an indication that you are in that upper midwest region of the country, then perhaps I could point you towards folks who might be able to offer some assistance.

I personally have my case overseen by Dr. Lake at the UofM and know of two other highly respected doctors in the Twin Cities area.  If you don't already know, there also is a local support group which is headed up by a couple of ladies who appear to be well known HCV activists for many years now.  You can find more information at liverhope.com.

As one who was told last week that current tx may not work form me, but who has being given a shot of 12 wks tx at full med dosage before stopping, I too am considering what my options are.  After PCR in 5 wks, I'll know for sure if current tx stops after 39 wks or if I continue.  High levels of rescue meds are also a factor which may come into play for me as well.

Bottom Line, while I did not have the ray of hope you were given, I did originally show a very favorable response, at least it seems until my first doc messed up my tx, so I can empathize somewhat who how you feel and what you must be going through right now.

[Snookmiester]

This is what Dr Ben Cecil suggests, and again he has treated Thousands of HCV infected patients.

"I would check labs every year for a year or 2, and then every 2 years. We have not had anyone relapse later than one year after their last interferon injection."


The most important statement, "we have not had <strong>anyone</strong> relapse later than one year post"
That is a very, very bold statement. This can be viewed at
www.hcvinprison.org and you can also read Cecil's credentials at his website, www.hepatitisdoctor.com

[MrsOckert]

I am so sorry for the news you've received.  It's not as impossible as some might suggest.  I personnally know (not just heard of from someone), but know two people that relapsed after several years.  One relapsed after 8 and the other one relapsed after 4.

I know there's a lot of controversy over whether someone relapsed or was re-infected.  But I just can't believe they would have done something to put themself at risk to be re-infected.

[Kalio1]

It makes more sense that they had a test that was not able to detect it or they reinfeted than it does that your friends "relapsed"

[52TELE]

Hi Kalio.

[chellski]

so sorry about your news, it must be devastating....but, you did the right thing posting your questions and concerns here.....this is a hep-c forum and you have hep-c related questions.....as you can see from all the answers you have gotten, there is much knowledge here....many interesting points have been brought up to you for you to go your next step.....reinfection?.....sub-standard testing 6yrs ago?.....relapse?......much info for you to still seek out....good luck to you...

[cuteus]

true, especially since the tests went down to 1500 in those days, sounds like very low vl that was not detected by the lack of sensitivity in those PCRs

[Califia]

Well, I could just say "ditto" to everything stated so beautifully above or open up a little about the continuing anxiety I feel despite having been rewarded a one-year post SVR, my ongoing daily obsession with certain medical journals and websites that all of us know so well, the paralyzing fear that arises each time the odd lymph node swells or I sink into fatigue or something lurches under my right ribcage.   I couldn't agree more that the larger verdict is still out, and as far as my personal stats go, I've only just gotten the green light to do a Fibrosure and don't even know what state 60 weeks of Pegasys have left my liver in.   Above and beyond this the question remains: just exactly how do we catch up after living with this virus during precisely those decades that were supposed to be our prime?   Wariness is my watchword, I suppose.  As for being "cured"?  It remains to be seen whether the powers that be allow us off the Major Risk lists...

[MissMiss]

This must be devestating to you.  I am so sorry.  Good advice has been given. Remember there are no doctors here.

Also, I want to apologize for the member who told you your post/comments were not appropriate.  That is not the purpose of this forum.  Please feel free to always come here for support.  You will learn to ignore some comments, as we all have.  You came for support and support you will get, as you can tell by the many other posts made to you.  I'll probably get some flack for saying what I did but I hope you ignore that too.  

Please follow up and let us know the outcome.

miss

[Morgaina]

Re-infection need not be through risky behavior! So many of us really cannot figure out how we contracted in the first place, how could we possibly make a difinitive statement when it comes to re-appearance 6 yrs. later? We just dont know enough, but we still fight a good fight and take it as far as we have to in order to live without this virus. It's not only treatment and sides that are a ****-shoot, the whole dang virus is!!

Hope all are doing well, I still try to read once in a while but have much less time now. Congrats to all undetecs, we're on a good roll!

[mycoldfeet]

As a relapser too and on 72 wk tx now, I can almost say I know how you feel, I didn't see if you were hep c 1a or b, but I will agree with the Doc and say that after so many years, also didn't get how many pcr's post tx you had, but I have heard a lot more people re-infected in that time frame than relapsed. Some of us know how we were infected most not, but hec 1a being prevalent in the u.s. there is a good chance you were re-infected and not know how, especially with how long the virus lives outside the body, but the question you have is now what? Doesn't matter how you got it, what are you going to do about it? I was mad too because I thought my Doc took me off meds for three weeks for unrelated medical problem that made me relapse,I've gotten over that now, the fight continues round 2 ding.

[honey11]

Scrued,,,I read your post early AM and just now checking back, I hope that you check in soon and give us a few more answers. I have to agree with what the majority is saying here,,,this certaintly seems like an isolated case and would love to hear more details.  We have so many doing the tx here,,SVR's,,,and also so many that have relapsed and gathering facts before they make their next steps. This definitely set an alarm for us!

Hey Beam,,,Good Afternoon to ya! I agree,,,lol  We don't like shadows,,,Hope today you are feeling on top of the world and enjoying your "lo's"!

[TnHepGuy_]

I'm very sorry to hear of your relapse. It must be devastating to have this happen after such a long period. Sadly this type of occurrence, though rare, is not completely unheard of. For example, see:

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16107964&query_hl=1&itool=pubmed_DocSum">Reemergence of hepatitis C virus after 8.5 years in a patient with hypogammaglobulinemia: evidence for an occult viral reservoir</a>


There is a whole body of study emerging on occult hepatitis c infection (ie - viral infection at sub-detectable levels via serum). Here is a good summary article from earlier this year stating where that research is at:

<a href="http://www.findarticles.com/p/articles/mi_m3230/is_2_38/ai_n16084704">Occult hepatitis C virus persistence: identification and characteristics</a>


As far as what to do next, if I were in your shoes the first thing that I would want to know is the current status of my liver histology. To that end I would be pressing my doc to place an order for a biopsy in the very near future. Only after getting the results from that would I then consider when, if and how to re-treat. As an extreme, long-term relapser there will be no information nor guidelines as to which avenue(s) might be best follow. And you'd want to be sure ahead of any tx that your doc and caregivers are willing to go the extra mile for you.


May God's blessings and mercy be upon you.


TnHepGuy

[dyce]

Scrued , sorry to hear , I'd follow the hepguys advice!!!

  Beam, how are ya up there, listened ta jimmie rodgers . Well I got some originals I downloaded .

Ole cat could cherp , ha dude!!

  How are ya , your gettin close to the end ??

  Today I did some weedwakin , and can I feel it .Tomarrow I'll get the rider out and try not ta hit anything LOL.

[desrt]

Sorry to hear this but it does happen. Contrary to a lot of the wishful thinking posted above, 80-90% of us who are SVR still show HCV RNA in our spinal fluid, lymphatic systems, and livers. Apparently something as simple as a course of steroid treatments can bring it back. I would think if you cleared on Rebetron, you would have a good shot with one of the PEGS. Keep us posted.

[MrsOckert]

Thank you for noticing.  Actually my happy happy joy joy dance was yesterday.  Thru a series of work related events I forgot to take my riba yesterday morning.  Then I had my last bloodwork done yesterday instead of Friday, so I decided what possible difference can two days make.

Taking the riba for two more days won't guarantee SVR anymore than stopping two days early will guarantee I relapse.  If it takes 6 months for the riba to get completely out of your system two days can't make that much difference.

I sound like I'm making justifications, don't I?  Gonna get off my soapbox now.

I have you in my prayers for Oct 13.  I'll stay in touch.

[returntosender]

This is kindof interesting, can you guess the illness - I made some edits:

"The problem for clinicians may well be trying to come up with a revised working definition for latent (i.e. still not adequately treated) _____________. The definitions in the medical literature for latency are somewhat contradictory: one group of authors defines latent _________________that may need (prophylactic) treatment as a non detectable (and confirmatory tests) in the absence of signs and symptoms, often basing their assessment on the viral load alone, whereas another school of thought considers a reactive anitbody itself, with or without a positive viral load, as evidence of latent __________________ requiring further testing and possible treatment (depending on the patient history)"

Anyone guess syphilis?  

In looking around at this issue of latency, testing, sensitivity etc, I found several discussions including this one and one on prostate cancer that are almost the identical conversation going on here.  This whole idea of measurement and how much can be relied upon is not just a hepc issue.

[DoubleDose]

Hey, I totally agree with all of you, and yes I was probably being a little tongue in cheek in saying that I ignore all these unpleasant issues....of course just a few months ago its all I talked about on the forum.  Yes, I agree completely that we need to keep a constant eye to the research, and  follow all the developments as relates to our somewhat 'fuzzy' SVR status:  like the post tx problems, and possible remedies....and like the latent, or persistent, or occult HCV that might be lingering in various places, doing whatever sorts of odd things to us....and like taking great care to monitor any possible threats of HCC, or further liver deterioration after having endured decades of viral attack!!!

Of course I really do consider these issues (and some worse related scenarios as well!!!!) every day.  I guess I think that if I were really cured, I mean completely CURED, then I would pretty much FEEL like I were cured.  I really do not, yet....maybe that will change....but for now there is too much hangover of the same sx, and physical problems to feel cured.  I DO feel better though....lots better....but not really 'normal' yet by any stretch.

Its good to hear from all of you.  I hope you all continue to benefit from your hard earned SVR's, and feel better every year.
We should all keep pushing on the research community to get better answers, better treatments, and to listen more closely to the people who have had the virus.  We can shed lots of light on the behaviors of this virus, if anyone would really stop to listen.

DoubleDose

[cuteus]

does anyone know what tests are they referring to when this is mentioned?: "conclusive evidence was obtained for the presence of replicating HCV in persons who apparently completely recovered from hepatitis C and whose sera were repeatedly negative for HCV RNA by standard assays."
how sensitive are the standard assays?

[DoubleDose]

The article that you linked is a good example of 'things I hate to think about' these days.  Underneath the optomistic, upbeat, 'cured' exterior that I have been developing over the past three years is the haunting fear/ belief that the HCV is much more pervasive than the mainstream medical community believes, and that the cure is possibly more a 'partial victory' over a not-well-understood virus that may be lurking at miniscule levels in many or most of our organs and bodily systems.
As you know I have had my own internal 'battles' with this issue, and for awhile was pretty obsessed with it.  I often fear that many of our post-tx difficulties over the years (after 'SVR") may have more to do with lingering viral infection and our immune system's constant struggle to deal with it. Or maybe the 'under-the-radar-screen' persistent virus itself causes nerve malfunctions, eye problems, hearing deficits, fatigue, brain fog, depression, hormonal abnormalities, etc. etc.

I often try to ingore this line of study altogether lately, since thinking about it makes me really depressed!  But, on the other hand, if it is a reality, and proves to be pervasive and medically significant for all or most of the SVR population...then we need to think about it.  We may need future-generation treatments, in this case, which someday may be able to really 'eradicate' the remaining viral infection.  Maybe this is what 'remission' really is like for any virus...maybe after our immune system, or interferon treatment, knocks the virus out of action (notice, I did not say eradicates the virus), maybe then the virus goes into a 'dormant', or 'low activity' mode, waiting for a chance to once again overpower the immune system, and blossom into a full fledged infection.  Maybe this is why a few immuno-compromised individuals who were SVR for many years have once again become HCV positive, and redeveloped the chronic infection.

This line of consideration also frequently leads me to concern about a 'silent' form of transmission to close contacts and family members...possibly inhabiting certain tissues or organs, without any signs in the serum, or any typical blood borne antibodies on testing for HCV.  The virus could become 'occult' or 'silent' in these close contacts, with unknown future consequences or capabilities.  This is why I have stopped thinking about all of the disturbing research coming out in the past few years!

Thoughts and Comments are welcomed from all!!!!

DoubleDose

[Morgaina]

Hi DD..........we have spoken along these lines a few times. I truly believe you are on the right track only from my own experience but unfortunately research doesn't seem to be exploring that. I suppose the virus is WAY overwhelming to the research people and concentration is focussed on "cure". Our whole medical system works on that precept, cure the symptoms! I dont believe they will ever win the war until they take the time to understand the enemy. I'm getting freaked last couple days, my brain is starting pre-treatment oddities ( not that treatment didn't have some pretty wild ones as well). I just can remember feeling like this, 3 mo.PCR in 2 wks. Wish me luck, I cant believe it will be well. Peace to you........Diane

[TnHepGuy_]

I'm certainly no fan of the idea of having occult remaining within me. But I'm even less of a fan of turning a blind eye to the research. All the while I was on tx, as well as before starting, I tried to pay attention to papers/research that I thought would be most applicable to my situation. Now that I'm SVR I believe that there are still a few main things that fit that "need-to-pay-attention-to" criterion:

- post-tx issues and concerns

- long-term potential for liver cancer based upon having the virus for 20 years

- occult hepatitis c


So while trying not to obsess on any or all of the above, I believe it's prudent for me to keep informed on what those in the research trenches are finding and publishing on these matters - precious little that it is.


TnHepGuy

[honey11]

Yeah,,,that is it,,,the verdict is out and maybe we are just left with the sides of hep,,tx all in one!  The damage has been done and thats what we are left to deal with.  Seems to be no real answers on this and some do feel better but always wonder if they were really sickly going in and so now anything is better.  The ones that just had some annoying problems with the hep,,,grew use to feeling that way and maybe don't know,,,,whats its really like to feel in their 40's,,50's,,,

[FlGuy]

Last riba should be real soon. Got that happy dance all rehearsed?

[cuteus]

I was going to wait to throw this observation out there, but I think over 24 hrs is long enough to wait for Mr. scrued to come back and answer our questions and clarify further.  It looks like a hit and run to me. SOmeone comes in, maybe a lurker that wants to stir things up a bit, and posts one controversial comment and leaves. Leaving us all to scramble for answers and running scare.  Until this person returns, I am going to be very cautious about this thread. It could be an impostor looking to stir things and sit back to enjoy our reactions. When he/she comes back to confirm his post, I will take it as a bonafide case.  Too many people using more than one name and stories for us to believe too quickly.

One of the articles in the links is a paper based on the research of many individuals, and coming up with conclusions.  If so many people have remaining HCV, after so many yrs of SVR, and surely, some must have had surgeries and trauma during all the yrs of SVR, why aren't we seeing more late relapses?

[Eisbein]

I thought the same thing...wondering if this post is for real.
Maybe another imposter?

Ina

[honey11]

You know what....That is really sorry if that is the case and someone has just some idle time and waiting for reactions.  I also wondered why no response yesterday.  Usually people that start a thread are very interested in the posts it receives and make comments themselves throughout the thread.

[Califia]

Talk about living in a state of inflammation--and its aftermath!