relapse?

Does anyone know the causes of relapses after treatment if undetectable at the time treatment ended?

[Alady1620]

I think the cause of relapse would be that there is still hcv virus in your body but, in such a small amount that the tests didn't detect it.

[fl-sam]

The most sensitive quantitative test only tests to 5 copies/ml.  If you have less, than 5, but more than 0, that test will show that you are cleared.  That is why undetectable cannot be called a cure.  The virus may still be in our system.  If after 6 months you are still undetecable, the probability increased that the virus was cleared and you are considered SVR.  If there was still some in your system it would have probably reproduced to the level of detection in that time.  However, that is not always the case.  For a small %age of people the virus still comes back.
When having your tests done, you should request that the most sensitive test be used.  The higher the sensitivity the more probable that the virus is gone if undetectable.

Sam

[cgd914]

Do you know of the relapse rate at this point is?  genotype 1b, pre-treatment viral load 1million, stage 2,  undetectable with Heptimax at 12 and 36 weeks.  9 more weeks of treatment to go.  I have some anxiety as you can see.

[cgd914]

Do you know of the relapse rate at this point is? genotype 1b, pre-treatment viral load 1million, stage 2, undetectable with Heptimax at 12 and 36 weeks. 9 more weeks of treatment to go. I have some anxiety as you can see.  Sorry meant to post to everyone

[can-do-man]

Well they give us geno1 a 50 50 chance. BUT being clear at week 12 with a heptimax i would feel your odds are much better. I've heard from 70 to 80% but no one knows for sure. But the odds are in your favor. Best of luck to you.

[NYgirl]

While nobody can say whether you could relapse or not you are doing very well with treatment and hitting the marks.  That is the best we can do - is trust the treatment, do what we are supposed to and hope for the best.

It really does suck that there are no guarantees but being a geno 1 you are doing very well.

Someday hopefully there will be treatments that guarantee us success...but for right now just keep on fighting the fight. With 50 - 50 odds - that's pretty decent.

[DoubleDose]

I hope you notice this follow up to the SVR thread below.  It was maxed out with replies, so I will use this one.  

You are going into that period after tx where all hell breaks loose.  I had and still have many of the same exact symptoms, and at EVERY test point since ending tx almost two and a half years ago, I have been sure that I had relapsed.  Clear on every test, SVR all the way...but as you have read in my posts.... no 'cigar' yet.  I continue to have the spinal, joint and rib pains, and lately they have gotten worse!  The rib pains seem to be related to the connective tissue between the ribs, and I do not think (in my case) that it is liver related at all, even though it affects the right ribcage mostly, and the mid-right back, and the right shoulder blade. It is like costochondritis of the entire ribcage. I really think this is severe autoimmune joint and connective tissue stuff drilling the heck out of me.  I sometimes feel the pain and almost electrical 'drilling' sensation in my mid and upper back to the point that my nerves become extremely 'hyper', and I feel like my ribs are going to explode!  I also get deep hip pains, and shoulder and neck issues as well.  It all seems to run up and down the spine, changing locations and intensity at will, and also encompasses my ribcage on a daily basis.  When the problems are at their worst, I become constipated,my body aches, my cheekbones get that red blotchy 'breakout' look, and my body temp. drops to around 97 deg.  To me, all of this seems VERY autoimmune and Lupus-like.  Scary that mine has come and gone with regular cyclical flare-ups for well over two years!!!!  I also feel the post-tx depression MUCH worse than ever while on TX.  I never needed anti-depressant medication during tx, and although often moody or intense, I was optomistic, productive, and always moving forward during a long 18 month tx at double the normal dose.  After tx, I felt fine for two weeks or so, then the roof caved in!  

Tell me more about what your endo says about Cymbalta.  I am VERY leery of anti-dep meds, and would love to find some evidence that SOMETHING is working as regards the post-tx pain, neuropathies, depression, etc.  I am frustrated with trying to keep PUSHING my way through these nasty sx.  AND it just plain does not work.  I exercise, eat well, and try to keep very active...but these post-tx issues can knock you down in a moment!  

Tell me more about your rib and back pains.  How about shoulder, neck, arms...especially when trying to sleep.  I used to sleep like a baby, now everything hurts, or feels like it has electricity running through it.  Not very refreshing sleep!!!

Good luck on your PCR, and do NOT assume ANYTHING negative about relapse because of your weird and difficult sx!  They seem to be pretty common sx for many SVR's.

DoubleDose

[Alady1620]

I wouldn't even try to speculate about your relapse rate until you have been clear for 6 months post treatment.  It's just impossible to know because we are all different.

[SJL]

I have the same problems that you are experiencing after 2 rounds of therapy.I too was undetectable for 6 straight mths.on Infergen therapy and now my VL is 30,200,000. I only started with 600,000 in 03. Figure that out? Their is no rhyme nor reason to why any of this happens. I am also experiencing numbness in my feet and legs and left hand. Have you had any numbness?

[PKCO]

I haven't read the number in awhile but if memory serves geno 1's with low vl,staging, and grade,on bx, the appx rate for relapse is 30%-35% . Geno 1b is the hardest to treat, so that number might be a tick or two higher as a result. The relapse rate (if you finish tx) can be ascertained through the prescribing information, studies, and trials. Then the many predictors of tx outcome, EVR (early viral response),ETR (end-of-treatment), and SVR (sustained virological response), weight, race,sex, vl, damage, etc., etc, can all be factored in according to their predictive value. It's alot of work to find a percentage that reflects an average for your particular situation, but you can. To be fairly accurate without all of the work, I'd look at Schering-Plough and Roche's websites. I know one has it broken down for SVR according to geno,etc.

ETR  minus SVR  = relapse rate.

Hope this helps.

Best regards,
PK

[mikesimon]

I like that trend Ina and I would celebrate if I were you. Sometimes good news is hard to come by and you ought to enjoy it when you get some. Best of luck, Mike

[DoubleDose]

Ina

Your numbers should be very reassuring, and it looks like you are fine as far as staying undetected.

Please do follow up on the Cymbalta info. that you receive from your endo.  I am very curious as to how Cymbalta stacks up compared to other frequently prescribed drugs, and how effective it has been for post-tx problems, fibromyalgia, etc.

Does your 'liver pain' seem to wrap around your ribcage, and cause pain in the mid-back and under shoulder blades?  Does it seem more severe when 'twisting' or turning your back or shoulders?   Mine is very sensitive to pressure on the back and under the shoulder blades, and also seems to be reproduces somewhat when I press on my lower ribs.  I no longer have pain when I press UNDER the ribs, as I had in past years before tx, and before becoming SVR.  Try to determine if your pain emanates from the RIBS themselves,(as in costochondritis) and radiates into the back and shoulders, OR if it is truly painful when pressing UNDER the ribcage, into the liver area itself.   Mine seems to be really joint and connective tissue oriented, but it ranges from my hips and 'small of the back' up the spinal column, through my middle and upper back,around the ribcage, and especially under the right shoulder blade.

When my hips, small of my back, and mid-back area hurt the most, I seem to get a referred pain through my lower to middle abdominal area, and a feeling of constipation or pressure there as well.  Any similarity to your symptoms?  I think interferon tx post sx issues have commonly affected many people in the spine and connective tissue, but in several reports I have read comments about bowel 'motility' problems, and severe constipation.  I am trying to determine if others on the forum have experienced similar sx, or know of others who have experienced these problems after successful tx.

Thanks for your input, and anybody else on the forum who would like to comment.  

DoubleDose

[jmjm530]

Einstein,

Given those numbers, I don't think you have a thing to worry about. Must be a big relief. Congratulations !

DD said: I have read comments about bowel 'motility' problems
-------------------------------------------------------------

I suggest some occult Mangoes or prunes :) Hope this finds you otherwise well.

-- Jim

[jmjm530]

Now I got your name correct :) Be happy when my brain fog starts to lift.

[honey11]

Ina,,,,I agree that a celebration is definitly in the making! Looks like you got it beat!  Remember,,,one day at a time,,,You can only conquer so much and then start new another day!  I'm on alert for all people that are post SVR's but stuck with the aftermath!  We have so much to learn from each other and I'm just praying and hoping that one day,,,,we can all say that we are not only SVR's but have absolutely no pains!  Keep us posted on how you are doing!

[can-do-man]

Hey girl, just read the good news. Now you know when that trend starts it only gets better. Next SVR, then next goes the pain. Things seem to go in threes. Whats this "love letter" bit To the Doctor? It seems like only yesterday it was me. :(

Still happy for you, just try and be home by 12:00

[jmjm530]

Eisbein said: Heptimax was drawn yesterday, and Jim said it usually takes 3-4 days.
-------------------

I think it depends where you have the blood drawn and the lab doing the actual test.

The standard order Heptimax is done in two parts and sometimes they  might even use two labs. First they run a PCR with a sensitivity of 50 IU/ML. That is what takes around 3-4 days, at least in my experience. Then -- and onlly if the PCR is negative -- they run the TMA (sensitivity 5 IU/ml) which takes another week. The entire process for me has averaged between 1 and 2 weeks. That said, I believe Snook and Mike Simon said they get final results within a few days. Different labs.

The AD's sound like a good idea and hopefully your energy will come back. It's been a long, hard road for you and the body will need some time to adjust, but given your new labs, you should have every reason to be hopeful it eventually will.

-- Jim

[jmjm530]

Your ALT/AST ratio is moving in the right direction, and while I'm not exactly sure how to weight its signfiance post-tx, I have a feeling it will reverse completely with time.

What will I do? LOL. Well, first, I have to decide on when to stop. I haven't picked a date yet, but I'm on week 53 and it will be soon. My treating doc and consult doc told me to stop everything at once, although I am intrigued about the taper thing.

So here's the question. You mentioned you tapered off -- and I believe Cuteus' did the same thing. Was this based on something your doctor recommended, or a study you read, or just on your gut feeling? BTW if I remember correctly, Dr. C once posted (in the context of double-dosing) that *increasing* the peg near the end of tx makes a certain amount of sense.  

So many doctors. So many opinions. So little time. :)

-- Jim

[cuteus]

I tried holding my breath in anticipation and crossing my fingers and toes for good luck, but after those precious joints began to beg for mercy, I realized that you did not need me to do any of that voodoo stuff. The tx and your determination did the trick, with the help of your caring doc. Just don't dance around too much at the end of the week when the negative gets in, in writing. You might injure your fingers in a fall, and we won't know for 6 wks the results!


I am sure you know you can get a raised toilet seat, maybe a motorized one too. No need to exert yourself.

I wish I had a kayaking partner...
much luv!

jm; no studies on the cutting down on this end, well, maybe the terror study which stated that tapering down after a long ride allows for the brain to come back to its senses and somewhat rational behavior.
Is that EOT fear taking hold of you yet?

[jmjm530]

If no studies, and if your doctor didn't recommend it, on what basis did you decide to taper off? I mean it makes a certain amount of sense but inquiring minds want to know :)
____________________________________________________________-

EOT Fear? First I have to end treatment, don't I?

But seriously, as an aging stage 3, 1B, of course I'm concerned about the possiblity of relapse --  but even with that eventuality, the silver lining is that I'll be off the tx drugs for at least six-months to a year before making any decisions. And with all my sides this time, who is better experienced than myself to do it again -- if and when that makes sense.

-- Jim

[FlGuy]

Sometimes you just need to decide to jump on or jump off - hard decision are difficult for a reason. At this point you have been clear for as long as 1's treat in their entirety and wracked by sx's and pre-existing stuff.  What more might you expect out of doing 56, 58, 60 ? (no reply needed, I'm sure you've asked that of yourself a jillion times).  Killin' em deader is a goal we all have, but watch out for the rest of your body too.  BTW how them moths? End tx when last moth falls? But how do you know it's the last moth?

[jmjm530]

Unfortunately, study data and expert medical advice is either conflicting or incomplete (maybe that's why it's conflicting :)) when it comes to hard-to-treat populations with negative pre-tx predictive factors (geno 1b, age 59, stage 3) who also happen to have a positive predictor once tx starts, i.e. RVR.

Some put more weight on the RVR, and therefore suggest 48 weeks. Others put more weight on the pre-existing conditions and suggest being clear up to a year after non-detectible which would be 54-58 weeks, given my being clear at week 6 and depending on whether you use the 52-week callendar year or the drug companies 48-week year.

Besides searching for studies, I sought four different medical opinions on when to end treatment. Two hepatologists suggested 48 weeks, my treating doctor suggested 60 weeks and one popular doctor on the internet suggested 2 years.

Drusano himself states his model numbers are conservative because I believe his first PCR was at week 12, meaning many of his week 12 non-detectibles could have cleared earlier. Therefore, to play it safe, you could start adding your 48 or 52 weeks from week 12 even if you cleared earlier. That would put me at 60 or 64 weeks, again depending on the callendar year.

Where I finally came out is that my guess is as good as any :) That said, everything being equal, IMO longer is probably better although no studies support support this for EVR's, only for slow responders.

But everything isn't always equal, and as you point out there's can be a major downside to extended treatment -- both QOL and side effects, some of which may be permanent.

If I wasn't a 59 year-old, 1B, stage 3, I would have stopped at 48 weeks. Gosh, I probably wouldn't even have treated. LOL. But at stage 3, I can rationalize taking more risks with the treatment drugs for a better shot (reward) at SVR than if I had less liver damage. Because should I relapse, the alternative may be even a longer drug exposure should the newer drugs not arrive in time.

Currently I'm on week 53 and plan on stopping relatively soon. Fortunately, some of my major sides -- Laryngopharyngeal Reflux (LPR), upper respiratory and ear infections, and psoriasis, are now only let's say 3-4 on a scale of 10, when for the body of treatment they were between 8 and 9. This alone is making it possible to extend, as at week 20 I seriously didn't think I'd  make it to week 42, my original goal.

Recently, at my doctor's office, a visiting doctor examined me and after hearing my doctor and NP disagree about treatment length, turned to me and said "we really don't know a whole lot about hepatitis c". LOL.

Another doctor who I emailed, wrote back and suggested 48 weeks and then said "contact me if you relapse" LOL. So again at this point, I figure my guess is as good as their guess. Because when I ask ANY of them to "show me the beef" -- studies, data, ANYTHING -- to support their recommendations, I just didn't get anything other than different deductive processes derived from probably the same inconclusive data.  No beef. Hardly an order of fries :)
--------------------------------

The MOTHS currently are either dead, or in the egg/cocoon stage where they actually do all the damage but are hard to find. Of course, I decided to extend treatment with the exterminator and will be spraying again in a couple of weeks :)

Thanks for your thoughts and concern. Hope this finds you well. Anything new on your front?

BTW to leave room for Ina's messages, probably best to drop down one thread "genotype 1b SVR" for any responses here, as there seems to be plenty of room left on that thread.

Regards,

-- Jim

[DoubleDose]

Thanks for your follow up on the issues discussed.  I will explore the Cymbalta strategy and discuss with my doc.

On the shoulderblade pain, when you stand up straight and rotate/twist your trunk backward and around, compressing that shoulder area, do you feel an intensification of the pain?  I sure do.  Also, if I lean backward while rotating the upper torso, I can feel the same 'pinching' type pain run right down my spinal column, along the right side, all of the way into my lower back and right side hip.  I think the pain is all part of one 'syndrome' causing the connective tissue in shoulder and spinal areas to become inflamed, and very painful.  

I am hopeful that the problems are more 'autoimmune' in nature, and part of the post-interferon syndrome, rather than the 'dreaded' residual HCV virus after SVR, that could remain in compartmentalized areas of the body, and continue damaging tissues on a chronic basis.  

My 'shoulderblade pinching and pain' also began in earnest during and after my first tx in 1998-1999, and has more or less
remained with me since then....but has become much more intense in the past year or two, AFTER my successful tx in 2002-2003.

Any additional comments on joint, back, rib, or shoulder pain?  How about sleeping, and pain?  Refreshed sleep after 8 hours?

Thanks for the comments and reply.

DoubleDose

[cuteus]

geesh! so many different medical conflicting opinions! How can anyone follow this saga! you might as well light a candle at some Santeria altar and ask Mandinga for an answer also!
I have not seen any studies on tapering off that sound convincing.
The fact that I stopped the riba cold turkey with no signs of 'withdrawal' makes me think that tapering might not be needed at all. It looks like you will have to sit somewhere quiet and meditate for enlightment. And ultimately follow that gut instinct, if it has served you well before.  
It was my fear, not having extreme complications, and having too much Pegasys left in the fridge that motivated my actions. Some people think that tapering off after long tx, might prevent a shock of the immune system that might trigger autoimmune conditions, but again, I have not seen much written on the subject.
follow the yellow brick road.
I really hope it is enough for you. We have seen carpedi's case, in her 60's and cleared with 24 wks. Ok, her stage was one, and female gender also a plus, but aim for 60, and if you still are coping well, with no visible adverse complications, revisit the EOT date.
Of course, at some point you have to find out if this tx worked by letting go. Get some candles at the local Botanica. ;)

[DoubleDose]

Ina,

I am sorry that I missed one of your posts on this thread...the 'pleasant dreams' post with a detailed description of your problems.  All I can say is your shoulderblade, rib, hip and spinal issues, chiefly on the right side, are an exact MIRROR IMAGE  of yours.  I am amazed at the complete similarity of our problems. I wonder how many others have the exact same syndrome from tx?  

I am going to take this up with my doctor next month, and really grill him about other patients who have presented with these issues.
Please keep me posted regarding your progress, and any results you might get from Cymbalta, etc....

DD

[jmjm530]

Cuteus said: It was my fear, not having extreme complications, and having too much Pegasys left in the fridge that motivated my actions.
-----------------------------------

Funny, that was my rationale for not throwing away the Hagen Daz, the last time I decided to diet :)

In an earlier life, I set some endurance records by breaking the distance down into intermediate goals. The trick there was not to just play games with yourself, but to really believe the end is closer than it really is. No doubt this technique has been partly responsible for getting me through tx to today. That said, as I see it, the downside of treating too long is potentially too dangerous to do it just because I can.

Frankly, my last conflicting consult had a delayed (but very relaxing) effect on me. Because in the end, it's your "gut" you have to live with -- and therefore want to follow -- not anyone else's. Thanks for your input, I can see you might have gone through a similar process.

-- Jim