hcv relapse symptoms

[ifx23]

Hi and sorry as this is probably a stupid question that only a pcr can answer but here it goes. I am wondering if anyone who has relapsed after treatment had any symptoms that they can recall indicating relapse? I am only 6 weeks post tx but started feeling good about 3 weeks post tx and have felt better than I ever have, even before tx, for the last three weeks, lots of energy, appetite and cognitive ability :).... until this weekend. I am now experiencing fatigue and, excuse the grossness, but the urine is appearing darker and the stools lighter. I am perhaps just paranoid but 4 - 6 weeks post tx is when most relapes occur isn't it?. Just worried and looking for any info ..thanks!!! 1a - neg. at 12 and 48 weeks.

[gena606]

I am 28 years old and went through treatment for my hep c 4 years ago. I was on interferon and riboron for just 4 months and went undetectable.  But a few months ago my female doc, said i had hep c. I thought that I was undectable? I really dont understand it. My doctors are all back in the military and i dont have a current one now. But i have been tired and feel some pain in my side. I want to know what the symptoms are of a relaspe? Please if anyone can help me. I have a gasrtonintoligist but not a special docotor for this and i havent even hsd my vial load tested in like 3 years. but I am scared. thanks gena

[DoubleDose]

THAT is exactly the group that benefits the most from extended treatment:  The ones that relapse after 48 weeks of treatment!

If you can get undetected, before 24 weeks of tx, and remain undetected without viral breakthrough, then it is chiefly a matter of time spent at undetected that will increase the odds of SVR.  Getting undetected is a major sign that you are a candidate for cure!  Some people just need to stay undetected for a much longer time, AND use sufficient Ribavirin, in order to achieve SVR.  I really do not buy your nurse practitioner's statement at all!!!  The relapsers are the main group doing extended tx the second time around....and though it is no guarantee....a large number are finally getting the SVR.  I do believe that recent literature will support this assertion.  
Weight based dosing on the Riba may be helpful to avoid relapse, and some doctors are now using even higher doses of Ribavirin, augmented with Procrit or similar RBC boosters, to increase the odds of SVR.  Remember, you ARE a responder!  You are just currently using a 'sub-clinical' dose as far as getting cured.  Doing a full dose is not much different than a 3/4 dose anyway, so why not go along undetected rather than maintain a low viral load????  Adding the riba, and extending would then put you right back in the hunt!

Whatever you decide to do....best of luck!!!!

DoubleDose

[Petey7]

I asked my nurse practitioner about this. After reading about how others here had treated for extended periods I asked if i was a candidate for this. She told me that the percentage of people who attain SVR from extended Tx was very low, IF they had replapsed after the usual 48 week course. In other words, she made it sound like if it doesn't work after 48 weeks it probably isn't going to work, at least from their trials. I am definitely going to ask again the next time I go, in about 2 weeks, even though the thought of 72 weeks on that **** doesn't sound very appealing. Not that I had a very hard time, compared to some I was very fortunate. Never had to use any injections the bring up RBC or WBC levels. Mainly was just not being able to get through many days without a nap and the rash. Even though my blood counts weren't bad enough to treat, they were low enough to cause fatigue and a slightly compromised immune system.

[cuteus]

I agree. The first time petey posted the next course of action, I could not understand myself why his dr was not going for SVR. he seems like a perfect candidate for a cure, why offer only maintenance?
puzzled minds want to know

[DoubleDose]

Once again I have to chime in.  My doctor goes for 'cure', and many others do as well, in cases where they know the patient is capable of becoming undetected.  It seems you can become undetected pretty easily, that is, on a standard full dose.  My personal take, having seen and known similar cases over the years (myself being one of them) is that you could probably be cured of the virus and get the SVR with your original full standard dosing, along with full dose ribavirin, and an extended course of therapy going for about 60-72 weeks overall.

I really do not 'get' why your doctor so quickly went to maintenance tx.  I thought it was being used in really dismal cases, where there is a non-response, or at best a partial response to interferon tx.  My personal opinion is that I would really push this with my doctor, to get a revised, aggressive protocol aimed at SVR,  OR, see another, more 'SVR' focused HCV doctor.  I really think the maintenance strategy is way premature.

DoubleDose

[Petey7]

I first became undetectable on combo Tx after 12 weeks. Relapsed after 48 weeks of Tx. Started monotherapy, Peg only, and cleared around 12 weeks or so. Evidently this isn't unusual for responders, they sort of expected me to stay undetectable when I went to 3/4 dose or at least return to undetectable after going up slightly when first dropping to 135 mcg. When I stayed detectable, very low count, over about 7-8 months we decided I wouldn't become undetectable at that does but to drop to 90 mcg. and see if it went much higher. It went up slightly but not very much. The goal on maintenace was always to get to 90 mcg. of Peg alone. They just try to get you to undetectable if possible. This protocol stems from the HALT-C studies.

[Petey7]

I didn't say he was the best Hepatologist, just one of the most renowned. Dr. Mitchell Shiffman. I will ask about treating again but I was just getting to the 5 years of remission for Lymphoma and was hoping to MAYBE find a health insurance plan that didn't cost my wife and I $1450 a month. If I go back on more expensive treatment who knows what I'l be paying next year. But then again, the maintenaance dose probably costs them enough to rate me at the top level anyway. Also not too sure about taking on the Riba rash and all the other great sides again. I feel relatively good on the Peg alone and my liver seems to be doing OK as far as the enzyme levels go. In any case, I will ask next month when I see them again.

[cuteus]

Petey; you became undetected on peg alone?  that is pretty good response!

the insurance cost is pretty steep, do you qualify for any assistance from the drug companies?

we were just poking fun at how many well known hepatologists are at the board. we all want the best when it comes to our health!

[Petey7]

That's interesting. I asked about the theory of extended treatment but was told it probably wouldn't work, that a very small percent reach SVR that way. My doctor is one of the most well known if not the most well known hepatologist in the country. Not that I ever see HIM, but his team is outstanding. I will bring it up again. Thanks for the info.

[DoubleDose]

My doc is also one of the most well known HCV docs in the country, and has treated thousands.  He routinely treats relapsers, like yourself, by extending treatment, and has been highly successful.  One guy that I know went for 18 months and relapsed.  He did another round, for two years, and has been SVR now for about one year!  He was a difficult case, but the KEY to his treatment success, was that he was ABLE to get undetected on treatment.  If you got undetected in 12 weeks, there is no reason in the world why you cannot achieve SVR with proper continuous full dosing, and a lengthy extension of therapy. (You cannot reduce doses though) Also, the ribavirin should be kept at MAXIMUM levels, using Procrit as needed.  If you can get and remain undetected during treatment, you are well on the way to SVR....but may just need a longer period to fully clear low level viral replication, and to fully clear the hepatocytes of the virus.  Do some research, and speak with some other leading HCV docs....not just Hepatologists, but Infectious Disease specialists, etc.   Dr. Ben Cecil also uses an extended approach, with appropriate dosing, to gain the SVR in his patients.  Many recent studies are showing increasing SVR rates using more frequent dosing, extended therapy, higher Ribavirin dosing, etc.  You have many tools to work with to get the SVR.  Don't settle for less than a cure, since you ARE a responder.  Responders can generally be cured....with some extra effort!

Good Luck!

DoubleDose

[mikesimon]

Did anyone ever notice that almost everyone has one of the best or the best hepatologist in the country and yet they're almost all different doctors? I mean no disrespect here - it's the nature of being sick and desperate and hopeful, I think. Afterall, I have the best transplant sugeon in the world. Mike

[cuteus]

I have/had TWO of the well known hepatologists! One even wrote a whole book on liver disease and just had a reprint, mine is better than yours!! :-)

it is funny, how many well known, internationally famous drs are on this board! I don't think it really means much, I believe there are no experts on hep c.  Each one seems to hold a piece of the puzzle, and there is no picture yet.  just my 2cents.
glad to see I am not the only one who noticed.;-)
I am so CURIOUS to know who these people are. I wonder if it is ethical to post a link to their bio.  Actually, I don't think it really matters how famous they are, just how good they are to us as individuals.

[mikesimon]

I agree with your take on Petey. I have generaaly felt that relapse occurs because of infected hepatocytes ramaining in the liver and I feel that by extending TX natural cell death will eventually occur and with it the infected cells will disappear. I used to have a lot more knowledge about why I feel this way - now all that is left is the belief that extending TX can be the answer for some hard to treat cases. I tested clear with Heptimax and when I stopped TX I went from undetectable <5 IU/ML to 6.85 Million IU/ML is less than 3 weeks. The next TX I wanted to be undetectable for over 1 year with Heptimax <5 IU/ML. I have been okay since stopping in June 2004 and I had that bike wreck May 2005 when only God knows what drugs they were giving me while I was unconscious with brain damage and yet I stayed clear. So yes, I agree that if I were Petey I'd find someone who'd let me treat longer. Of course, there is so much talk of side effetcs from this stuff and though the only one I have is low normal Hmgb I gotta wonder how others may react. But I'd go for it DD. We agree on this one. Mike

[DoubleDose]

I agree, it is funny.  I guess it boils down to 'who gets the most headlines' as far as best docs, etc.  They may or may not be the world's best, but the press sure knows them well.  Although, I DO believe some of the docs have been way out ahead of the curve in their treatment approach, experience level, and understanding of what might or might not work.  My doc has taken on tough cases, that have failed elsewhere, and has been very successful.  He has run many trials, before the drugs were widely available, and has had the opportunity to see first hand what the results look like.  So I guess there are a good handful of HCV doctors out there that might be really considered 'best in class' as a group.  I am sure there are many more who do a great job, but are far less heralded and quoted in the news and literature.

I still have had many disagreements and differences of opinion with my 'world class' doctors.  I guess we and they are all learning as we go.

Good to hear from you Mike.

By the way, if you read the thread above, what is your take on Petey's regime, and odds of success if he were to give it a full go again?  I really think his doctor is missing the boat.

DD

[DoubleDose]

I still have to believe that you are a PRIME candidate for SVR.  You have responded twice to interferon, by becoming undetected, which is in itself a huge milestone in the process of becoming SVR.  With full dosing, and possibly extended therapy going from 60 weeks to maybe 72 weeks, you would probably have a 90% chance of SVR.  Why is your doctor not pushing for CURE???  rather than maintenance???   Maybe you need to see another HCV specialist...one that can put you on a regime geared to obtain the SVR.  You obviously are able to become undetected...and hence are a very likely candidate for SVR with full dosing, and some extended therapy.  The reason you relapsed after the initial 48 week tx is probably just that you did not extend for a long enough period.  The benefits of eradicating the virus far, far outweigh doing a long maintenance therapy.  

Please review the literature regarding odds of success for responders.  You came close in the past, and can probably beat this virus completely with the proper therapy regime, with the right doctor, and with some adjunct medications to help get you through.  I think it is too premature to give up on the SVR, and with your responder profile, you are a prime candidate for success.

My best wishes to you.   It took me 72 weeks of high dose therapy to get the SVR, on my second tx.  On my first, I also relapsed after being undetected for a long period.  Don't give up!!!

DoubleDose

[Petey7]

My reply was about maintenance after relapse. I went through 48 weeks of combo Tx. I had cleared after 12 weeks and continued the Tx for 48 weeks and relapsed after Tx. After a month respite, I started maintenance with full dose Peg only. I cleared after 12 weeks and then went to 3/4 dose. I became detectable again but only slightly above the tests minimum limit. After another 8-9 months at 3/4 dose I still hadnt become undetectable again so we figured going to half dose wasn't going to change things for the worse and it didn't. I am still only slightly above the test limits (PCR.) Since the cost of the injectables went up to $200 a month after the Pirates, er, I mean insurance people, stuck their filthy, greedy fingers in my pockets, I wanted to get to half dose as soon as possible anyway. At beginning of Tx, over 2 years ago, I had Bx showing likely bridging fibrosis. No idea where liver damage is now but hopefully it is no worse. I am male, 52yrs, the big 1A.

[DoubleDose]

Why did you cut back on the Pegasys after getting undetected in 12 weeks?  I would have to assume that staying with the full dose, that got you undetected in 12 weeks, would have given you the opportunity to SVR over a full course of therapy.  My belief is that anyone who is able to get undetected can gain the SVR with proper dosing, and appropriate duration of therapy.  Oftentimes this may mean an extended therapy, for late responders, etc. but getting undetected in and of itself is an important milestone in the SVR process.  Is there a reason you had to cut back to a slightly lower dose after getting undetected?  I would have kept the dose at full tilt, and pushed the Ribavirin to the maximum I could tolerate, and run out the therapy for a full course, to try for the SVR.

DoubleDose

[jaroman]

Thanks. Did you stay at each dose level for just a month before drawing the PCRs?  What was your liver damage level in the beginning?
Best of luck to you.

[Petey7]

Started out with full 180mcg. dose of Pegasys with the intention of trying to get back to undetectable. Was undetectable after about 12 weeks and went to 3/4 dose. PCR went up slightly and I never got totally undetectable again but got very close so I then went to half dose about 2 months ago and only went up slightly at first PCR after half dose. Will get results of 2nd PCR at half dose this week. Been on Maintenace for about 13 months total now.Liver enzymes are great and no sides that I can think of except maybe not having the energy I once had.

[jaroman]

petey: what is your maintenance regiment?

[Petey7]

I had a pretty good idea idea I had relapsed when the pimple like breakout re occured on my face. Sounds strange and maybe was a coincidence, but it cleared up after starting maintenance.

[SJL]

I have relapsed twice and the fatigue seemed to be my only sign.
I,like you, felt good for approx. 3 weeks post therapy. Of course this doesn't mean that it affects everyone this way.

I think our mental outlook has alot to do with it. I definitely will try therapy again when it surfaces. It is a tough therapy, as we all know-but better than the alternative.

I called my Doctor around the 4th.week after finishing therapy & he immediately did a VL. Only you know how your body feels.

I recently tried a maintainence dose, but found it to be almost as bad as the full dose. I did 48 wks. the first time (peg-intron/ribavarin) and 52 wks. of infergen/ribavarin.Obviously my case is going to be tough to crack-1B, stage 4.


Hang in their and think the best, but be smart and see your Doctor if needed.