Did anyone on this web site that is relapsed, do so after clearing at 12 weeks post treatment?

I was wondering if any of the people who were undetected at 12 weeks post treatment relapsed between 12 and 24 weeks.  There are a number of us in the waiting game and I was wondering what the experience was for anyone here?  Who did achieve SVR after being clear at 12 weeks post?

I go next week (8/26) for my 24 week lab work.  I seem to be in the same boat as a number of others right now.

[pKinCA]

Oh my, that is a scary question!!  

I don't know if I'll be checking this thread until after September 30th, when I go for my 24 week VL :-)

Seriously though, I did post an article yesterday that says odds are excellent at achieving SVR, if one is UND at 12 weeks post tx (it's in a thread started by redrodeo if you're curious...)

Good luck next week!!  Please let us know your results (aka good news!) as soon as you know...

pK

[jmjm530]

A fairly recent study suggested that an UND 12 weeks post treatment correlated 100% with SVR in all cases except stage 4. The stage  4 correlation was still pretty good -- at least 80% if I remember correctly. The caveat is you should use a very sensitive viral load test. Something that goes down to 5-10 IU/ml should do it. BTW a 4 week post UND correlates around 90% SVR as most relapses happen shortly after the tx drugs are stopped.

Good luck!

-- Jim

[JennyPenny]

One of my friends relapsed twice agter treatment and she was undetect both times before 12 weeks. It happens, but not often. Most relapsers will relapse in the first 30 days after treatment ends.

[jmjm530]

Are you saying that your friend was UND *before* 12 weeks and then eventually relapsed, or that your friend was UND *at* 12 weeks and then relapsed? "Mar" was asking about the latter scenario which is quite different from the former.

For example, someone UND at week 4 post might have only a 90% chance of SVR but that appears to become 100% at week 12, at least according to the study I read.

[mar148]

Thanks everyone.  Personally I tested undetected at 12 weeks post by Qualitative TMA, so I feel good about that results.  Again, thanks for the feedback, it helps as you wait.  mar

[jmjm530]

Unless you're stage 4, I'd say you're as good as SVR and would have to be extremely unlucky to relapse at this point. Congratulations!!!

[kiowa806]

Yes,Yes..!!!!!!! Sounds great doesn't it.Sorry for the sarcasim.You are probably looking for good news however,i can only report relapse after 36 months.The treatment of Peg was very hard on me and was supposed to go for 12 month treatment and only survived a 5 months of that. Doctors stopped the treatment because severe staph infections(MRSA) were going to kill me faster than the hep C.So i stopped treatment and in 6weeks they said that i had responded to the treatment well( during the short time i was able to withstand it)and cleared the disease.Now 36 months later my Hep is active again and awaiting the results of labs to see how bad it is again.VERY reluctant to go back to the PEG,and may just hold out for another type of treatment or try xpiremental drugs.Have not been the same physically or mentally the same since treatment.Developed severe neuropathy,osteoarthritis,vertigo,and this bipolarish type thinking. Have been in severe chronic bone ,muscle ,and joint pain.Loss of breath and energy.I am 43 years old and feel 80.I so wish i could give you better experience.that would mean that i would be cured and feel like a normal human being.GOODluck with you it just wasn't the treatment for me.

[jmjm530]

Sorry about your relapse. Were you tested between week 6 and week 36 post treatment? Can you tell us the type and sensitivity of the tests used? You also mention that you are "awaiting the results of labs to see how bad it is again". Is this a viral load test or was the viral load test the one you had at week 36? Only a viral load test can confirm a relapse. Sorry for all the questions but the devil (truth) is often in the details when it comes to these things. If you did relapse, no doubt your shortened (5 month) treatment was probably to blame. Again, sorry about the apparent relapse and how you feel. These drugs can truly suck with many of us.

-- Jim

[redrodeo]

Good question. I was the one that pkinCa was refering to. My hepatologist says not to worry. But I can't stop it. Its a shame that I can't even take my doctors word for it. What his explaination was the six month check is a carry over from when they didn't have the sensitive tests they have today.He said consider that the hcv virus multiplys 10 to the 12/day.(thats one trillon copies per day) that after 90days it would be detectable with tests that detect down to 10/ml. Makes sense to me but I still can't stop worring about it.
My bld tests taking at the same time were very very good. My AST was 20 and ALT was 11!!!
The only solution is wait for the 24 wk.
Red

[kiowa806]

You are so right about details.I am very interested in them myself and when i get them i will let you know exactly what is going.I have just started going back to the doctors here and i just now have received the news and awaiting test results from three different specialist in three different fields of training due to the various problems i have been dealing with.Thank you for your response and i will be letting you know since you are interested.

[H20Lover]

Yes, this part of the game drags on.  I will find out Thursday (unless delay at lab) about my 14 week post tx results (scheduled aorund doctor).  Even if that is UND I still worry and will probably always worry the buggers are hiding out somewhere.  My fears are hopefully unfounded.

The Doctor feels very confident, but after all I have been through don't want to count my chickens until they hatch as they say.

I believe though statistically those who are UND at 12 weeks or longer are home free.

Please let it be true!!!!

Pam

[jmjm530]

Sounds like your docs have been less than forthcoming.

So, first, I hope that you are indeed SVR and the tests you have been recently given were not viral load but antibody tests. I say "hope" because the odds are not in your favor with only five months of treatment, assuming you were a genotype 1.

But as far as being UND via sensitive test 12 weeks post treatment and then relapsing -- that would be very unlikely.

BTW if your current doctors can't get their act together, you might want to collect all your records and have a consult with another liver specialist (hepatologist)

-- JIm

[Bobby1952]

  I am confused by the need of a sensitive test post tx.  I don't see how it could matter. Once you are off of tx the virus has nothing except your immune system to stop it from replicating again if it is still there. If it still exists it would come back very quickly.
   According to Dr Dieterich HCV rarely exists post tx at low viral loads if at all. This being the case any PCR test post tx  I would think would be fine.  
  Please resond with your thoughts as I am going for 6 month post tx viralload  pretty soon also.

Bobby

[jmjm530]

You're correct that a garden variety viral load test would probably accomplish the same thing six months post treatment. However, a very sensitive test would have predictive advantages EOT as well as early on as well as probably early post tx such as the 4 week post tx test. I did mention using a sensitive test to mirror the 12 week study but really don't know how sensitive a test the used. That said, I can't see any reason not to use a reasonably sensitive test even six months post treatment, at least something down to 50 IU/ml. Personally, the one I used at six months post was Quest's "HCV RNA QUAL TMA" which went down to 5 IU/ml. For me, it was both a double-check (of previous tests) as well as a confirmation that I was truly SVR. As long as the technology exists, why not use it.

[lolitriqui]

very unlikely with little liver damage; only late stage are supposed to relapse at this stage;  you most likely got rid of the bug;
C.

[jmjm530]

Just to clarify a little -- a study exists that shows 100% correlation between a 12 week post tx UND and SVR. My main point is that if you are going to use this study to help predict your own outcome, then you should use a test with at least the same sensitivity as the study used. I'm assuming it was sensitive down to at least 50 IU/ml because you hardly ever see the 600 IU/ml sensitivity tests being used in studies. I would also be curious if the 80 or so per cent correlation with stage 4's could have been even higher if they tested with a more sensitive tests. Although unlikely, I'm not convinced it's a given that you still can't have low level viremia at 12 weeks post treatment. Keep in mind that a small per cent of the group -- 20 per cent of stage 4's -- did come up UND at week 12 but detectible at week 24. So at some point inbetween they must have had low level viremia.

[pKinCA]

Here's the link to the thread by redrodeo that contains the full article I mentioned above:

http://www.medhelp.org/posts/show/601094

Article does not mention specifically exact test used, but it does say patients were undetected at <29 IU/mL.   Refer to the paragraph below with *****

pK

(Here are bits and pieces from the article...)

____________________________

"A Follow-up Week 12 Viral Count Is Useful in Predicting SVR and Is 100% Accurate in Patients without Cirrhosis"

The primary goal of HCV treatment is a sustained virologic response (SVR) determined by a negative HCV RNA at 24 weeks after discontinuation of therapy.

... this study was designed to assess the predictive value of the 12 week follow-up viral load in determining SVR.

*****  This was a cohort study of HCV patients treated from 2003 to present. All patients who were HCV RNA undetected (<29 IU/mL) at the end of treatment with viral counts done at follow-up week 12 and 24 were included."

The authors conclude, “A follow-up week 12 viral count is useful in predicting attainment of SVR and is 100% accurate in patients without cirrhosis.

In this sample, 9% of patients with cirrhosis were misclassified by the follow-up week 12 viral count.”

____________________________

Lastly:  My interpretation of the above sentence:

I interpret the above quote to mean that 91% of patients with cirrhosis were NOT misclassified by the follow-up week 12 viral count -- or said another way, 91% of patients with cirrhosis (in this study) did reach SVR.

[jmjm530]

Thanks for posting. It's not clear if the "<29" test was used at 12 weeks post or just at EOT although I'm assuming (always dangerous :)) they used the same test. I think what they mean is that 91% of the patients with cirrhosis were UND at both weeks 12 and 24 but that 9% of patients with cirrhosis were UND at week 12 but detectible (i.e. relapsed) at week 24.

Of interest is that one patient who was virus positive at week 12 post went on to become SVR. Some glimmer of hope and at least a reason to continue viral load testing beyond your first detectible post tx. My guess is that this person had very low level viremia but just a guess.

[jmjm530]

Another guess is that the person who was positive at 12 and UND at 24 had a false positive at week 12.

[pKinCA]

Hi!

Looks like they did 3 VLs:  End of treatment, 12 and 24 weeks...

"All patients who were HCV RNA undetected (<29 IU/mL) at the end of treatment with viral counts done at follow-up week 12 and 24 were included."

I thought the same thing as you:  "false positive" on the one person who went from positive to SVR.  That's why if I ever had a positive, I would re-do the test in a heartbeat!!!

100% of patients without cirrhosis (91% of patients with cirrhosis) who had UND 12-week VL reached SVR.   I'd be in Vegas casino all day and all night if it had those kinds of odds!!!  :-)

pK

[JennyPenny]

My friend treated wih Dr. Ray Chung at Mass General. She had her viral load done at 10 weeks due to some travel plans she made and did not want to cancel. She was undetected at 10 weeks, 24 weeks and EOT (48 weeks the first time and 72 weeks the second time. I don't know when her next text was done but I do know that she was detected at 24 weeks. She has bridging fibrosis (Stage 3?).

[Facta_non_verba]

Age 52, male, 185 pound at start but now 167, geno 1, high initial VL, log2 drop at week 12 but not UND until week 20 or so, Pegasys and 1600mg/day ribavirin.

Here are my thoughts on the issue: I've got 16 more weeks out of 72, and when I'm done I'll get my EOT labs and see everyone in 6 months. I like my doctor and the NP who looks after me, but I am so looking forward to getting all this **** out of my system and getting my life back. Whether I'm still UND 2, 4 or 12 weeks after EOT will have no effect on me since I'm not going right back on treatment anyway. I plan on getting my labs drawn 24 weeks after EOT and celebrating if I'm SVR or working through my options if I have relapsed.

I'm counting on "ignorance is bliss."

Jeff
Facta non Verba

[Effiedanna]

At 12 weeks i was undetected i am stage 0-2 ,geno 1a then at my 16 week labs showed a 23,500 VL to say the least i was devastated. I am having my 20 week labs done next week and hope that my VL is gone again. I know that its rare for this to happen but it happens and it *****. Its hard  when u celebrate at 12 weeks and cry at 16 weeks. Good luck and i will pray for u please pray for me. I take 180mcg of pegaus 1x a week injected and 1200 mg of Riba daily. Effie

[mar148]

It appears that you are addressing your results while you are still on treatment?  My question related to 12 week results after treatment is over.  Good luck with the remainder of you tests.  mary Ellen

[GoofyDad]

You said (emphasis mine)
Personally, the *one* I used at six months post

Just one? Jimbo, you're either slippin' or lyin'. Are you sure you didn't have a few done at different labs in different cities? C'mon now - fess up....

:) Be well.

[Jordie59]

I was one of the unfortunate ones that also relapsed after being undetected at week 12. I have not treated again as of now. My hep Dr. is watching and waiting for some new drugs before he puts me back on treatment. I am a geno 1.

Jordie

[jmjm530]

So you think drawing four pints of blood and shipping samples to five dozen labs in four countries was excessive? Honestly, I felt fine after a few transfusions.

All the best,

Jim

[comeagain]

Were you UND 12weeks post tx and then relapsed if so, what what grade of inflamation (inflammation) and what stage of fibroses did you have.

And also if so, how sensitive was the test that was done post 12weeks

ca

[pKinCA]

I have a few questions too:

How sensitve was the test used at 24 weeks (and at 12 weeks)?

Did you retest the 24 week test to rule out "false positive?"

What was your viral load at 24 weeks?

pK

[mar148]

From what I can understand I believe you meant that at your 12 week treatment point you were undetected.  It does not seem that you tested at 12 week post treatment but waited for 24, correct?  mary ellen

[jmjm530]

You say: "I was one of the unfortunate ones that also relapsed after being undetected at week 12".
-------------------
Do you mean you relapsed after being undetected at week 12 during treatment, or are you saying that you were undetected 12 weeks after treatment was finished and then you relapsed later?

If you mean the latter, can you give us what weeks you were tested post treatment and what tests were used. Thanks.

--- Jim