Can I stop the treatment

Hi everyone, I am Hep C genotype 1 with vl 800,000 before tx, started Hep C tx with 180 Pegasys a week and 1000 Ribavirin a day on 3/17/09. Four weeks later vl non-detectable, had lots of side-effects, but my body was able to hold on. The past 6 weeks has been much worse, constant headaches, body aches, joint pain, moody, lost of appetite, lost 10% of my weight, and I had to cut my work hours by 25%.

Blood test after twelve weeks of tx, vl still non-detectable. I am VERY tempted to stop the tx (because I know I won't survive another 34 weeks like I did in the past 8 weeks, unless I quite working but that's just out of the question because I didn't buy Lotto). My simple logic is this: if there is no virus left to killed, what the drugs are killing are just my RBC, WBC, all the good stuff, while making me miserable.

Of course my doctor wants me to continue the whole 48 weeks of tx, but what if the drug company made the 48 weeks tx recommendation because they wanted to make more money? Do any of you know of any previous study that showed persons got non-detactable vl after 3 months of tx, stopped the tx, and later the virus didn't come back, or came back? Please also let me know where can I find these case studies. Thanks a lot!

[PrettyPoisonNoMore]

You can research on the Janis site, www.hepcjanis7.com.  I know it can be miserable, but you don't want to have to start over.  You would no longer be treatment naive.  There are many here that became undetectible and followed the SOC and the virus rebounded anyway.  The 48 weeks of treatment is not because the drug companies want money.

[newleaf09]

http://www.natap.org/2005/AASLD/aasld_55.htm
http://www.natap.org/2006/HCV/042106_02.htm
http://www.natap.org/2007/HCV/021207_01.htm
http://www.natap.org/2009/EASL/EASL_77.htm

Don't decide anything until you read these links!  They are 24 wk. studies.  I'm guessing you are geno 1b, for which 800,000 is a low viral load.  If you stop TX now it's unlikely that you can remain clear.  I was a 1b, low VL and URVR (cleared in one week).  You are at least considered RVR (cleared in four weeks) though you may have done better if you had a 1 week PCR.  If you start over, you will have wasted these 8 miserable weeks.  You are obviously very responsive to the therapy and that will not change.  You will be again and you will likely have exactly the same crummy side effects.  What you cannot know is if you will be beginning the 2nd TX with a low VL.  Low is 800,000 for a 1b.  VL's jump around and you may not get the chance to start with low VL again.

If you are dead set on quitting, please read the links above.  They are about 1's with good success from 24 wk. TX.  The drug companies are not trying to squeeze more $ out of you.  US doctors are cautious in their recommendations.  In Europe and Asia, they recommend that patients who RVR receive 24 wks. of therapy.  If you can hang in there and make it to 24 wks., you will have a good chance of making SVR.  Don't waste these 8 weeks and the exceptional start that you have made.  The low VL might not be there the next time.

I ended TX 2 weeks ago, after 28 wks. because I was in a protease inhibitor trial.  I have every confidence that I will SVR and that confidence is not built on the protease inhibitor.  It's built on my strong response to the interferon and ribivirin.

[HCA]

You will almost certainly relapse if you stop at this point.
The minimum treatment period is 24 weeks for RVR (rapid virological response) patients who are undetectable at 4 weeks.
Your age and degree of liver damage are also predictive.
The fact that the blood test does not show virus is deceptive.
Relapse is caused by low levels of resistant mutated virus surviving.This does not show in the blood test,and soon as treatment stops this variant starts to multiply and you are back at square one.
Even with 48 weeks treatment one in three who were undetectable at week 12 will relapse.
You need to adjust your expectations to a more realistic level.

[alijee]

Dear All these things are temporary. You have reduced 25% of your work and i was work-off and remained in the bed many months. i was not able to walk 50 steps. During tx i decided to stop tx but this forum and my doc supported me much and thnaks god i didt stop. i completed the tx very so many sx. i have cleared and now im 13 weeks Post. Sometimes i felt that iwas dying with tx.  

i sugges you to listen only your doc what does he say.

[IMstacie]

It's very possible you may level out soon.  By this I mean, your sx may subside.  I was very sick for 3-4 months after starting tx.  I'm on wk 32 and I mainly feel tired & fatigued.  Please hang in there, one thing you don't want to do is go through this again by your own choosing.  

[copyman]

I agree with some of the other posters. hang in at least until 24 weeks. the only people I have heard with SVR shorter then 24 weeks are geno 2's and people that were in trials with the new PI drugs.

[Jenny_Penny]

Try to hang in there. Can your doctor, or even your primary care physician help with the side effects? If you're depressed they can start anti-depressants. There are meds for insomnia and pain that can be prescribed also. It would be such a shame to relapse.

[winner727]

   you have a good chance at clearence w those stats .crazy to stop . your tx mimics mine . now on 16 shot tonight, aint nothing but a thang . thats what they mean ,when they say rollercoaster. do you know how many people would chop off their little toe ,for  UND in 4  ? please reconsider!   do you have kids ?      fight on !     bob                            

[Kristina538]

What kept me going was the constant trend here that said the 'first 12 weeks were the worse'.   To confirm more,  a psychiatrist told me that generally,  around week 7-ish can be the hardest.   Weeks 6-9 were my hardest.   Well, they were all hard, but I became more equipped at managing the symptoms, and the symptoms became more manageable, although it was very very hard work and I felt like a geriatric looking after a geriatric; I hardly had the mental capacity or physical capacity to keep it up.  But step by little step.  I couldn't wait until the '6th full moon' - I did 2 full moons and I kept thinking I know I can do 2 more of those - it is a long haul and I'd hate to do it again... but I would.

I must admit, having been on tx before in 1994, I organised (via a huge overdraft) to take 6 months leave without pay.   I really thought I'd only manage 3 months, and by some miraculous turn of events got an overdraft in month 2.... I thought I'd have to start selling things to continue;   sometimes it's amazing how we get through by just putting one foot after the other.

Thoughts and prayers with you.... and HUGE congratulations for being so responsive to the meds...

[montanabln1]

Hey,
you started treatment because you wanted to get rid of once and for all hep c and this means quite bluntly 48 weeks is the way to go. Otherwise you are heading for a relpse and then you would be facing  further liver damage and minimum 72 weeks of therapy.
Try to organise  your work and taking of interferon  better.
I work in shifst- 3 days early and the next 3 days late and as cabin crew still manage to organise taking interferon on my first day off or immerdiately after my last shift.
make your free time your dealing time and feel lucky you have a a non dectable at week four and just try to deal with sd and ask your doctor for alll ways of dealing with them
we are all in this together

[jdwithhcv]

Well, it is your life, but you did ask.  To put it bluntly, you would be a fool to stop tx now.  It is difficult, but you have come this far and the treatment is working.  Don't throw it away now.  The sx are harsh, but you really have to suck it up if you want SVR.

[meakea]

Please do not stop your treatment now.  At least make it a goal to get to 24 and I think by that time you will have adapted to the meds better and you will find that you can do the 48.  If not, then at least get to 24 and give yourself somewhat of a chance to beat this virus.  You most certainly will not beat it if you stop now.

I was undetectable by week 4 too but my doc did not want me to stop at 24 and I've continued on.  I did, however, make 24 a goal and, when I got to 24, I was able to continue on and I am currently at week 41.  I am still working full time.

Hang in there!!!

[nygirl7]

Unfortunately you would not be the first person to stop early then relapse and have to treat again longer with more meds later on.  My own brother in law went 8 months and then stopped - relapsed and wanted to kick his own butt.

your body needs time for your immune system to be trained on how to kill any remaining virus that might be left inside. Just because it doesn't show in your blood stream doesn't mean it's not still there! It's a virus and could be hiding out anywhere deep in the liver inside some fibrosis. THAT is why we continue treating for so long after we are UND.

Nobody enjoys treatment and many of us have had very severe side effects and just had to force ourselves to continue each week. But it leads to SVR. You want every single odd on our side - do you really want to have to do it all over again (it is harder to succeed the second time because the virus can mutate you know and make it like super HCV virus that you have to kill).

[meakea]

One more thing:

There have been many people (in fact, most of us) who have felt like you do at this point in TX -- "how can I continue this treatment when I feel so bad" -- but they did push on and they found that things got better.  I believe things will get better for you too.

I read another Hep C forum too and, on that forum, there is a man who recently went through approximately 38-40 weeks of TX (geno 1) and he suddenly decided that he wanted to quit and he did quit (his doctor did not want him to quit).  He was not an early responder to treatment either.  I can't imagine how bad he is going to feel when he gets his post-treatment blood tests showing that he has relapsed, knowing that if he just had done the extra 8-10 weeks he might not have relapsed.  I hope he does not relapse but the odds are not in his favor.

Keep your odds in your favor.

[newleaf09]

Just back from my doctor and asked about activity of interferon.  Since you are so responsive to it, it has cleared the virus from your blood.  However, it is still infecting your liver cells (which can't be seen with a blood test).  The interferon just kills infected cells.  A new healthy cell replaces it but the virus may reinfect the new cell.  It simply takes the actual physical passage of time to kill off all of those infected cells.  Even when your blood says clear, there is still a ways to go to be sure it's cleared from the cells, as well.

[alagirl]

the only people I have heard with SVR shorter then 24 weeks are geno 2's and people that were in trials with the new PI drugs.
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and acute patients