Need to go back on tx

Question

Maybe some of you can answer some questions for me. I got my 30 day post-treatment blood results and it came back positive again for Hep. C. Before Coming off the tx my results would show normal viral and normal AST/ALT.  I am type 2 and my Post blood test showed 130000 UI/ML.  Everything else was normal. I don't want to bring up my Gastro, because there there are 2 sides to every story. I do know I need a different one, but for now I have the doctor that I got.  Question one is: has anyone you know had type 2 Hep. C and when on tx ( 6 months )only to have it come back again.  If yes how long did you have to go on tx the second time and what were the results. Oh yeah I was on Peg-intron and Rebetol 400 mg. twice daily.
I don't want to say to you that I would like to hold off until there is a less traumatic treatment and I had every side effect they mention and some they don't. I read on this websight about those who go through tx 2 times and no complaints.  They only ask to slay the dragon and continue the life they were living. Sometimes we do things when we were young thinking we're invincable. It is nice to have a websight where not only we can get honest opinions, but so can our loved ones. God bless each of you and may you be healed.

willing · Answer

Hi Billy - since you're considering retreatment, I wanted to make sure I didn't mislead you with something I said earlier. In general, for 2/3s *on initial treatment* increasing the riba dose from .8 to 1/1.2g or extending tx from 24-48 weeks doesn't yield a big difference in SVR which is why the protocol is different than for 1s. However, as a relapser, you're next tx will be "outside the box" and certainly increasing the length of treament or trying a higher dosage should be considered. One compromise option would be to start and, as Michael suggests,  test early and often. Early response is widely reported to be a good predictor of SVR (one study found predictive value in the drop observed 24hrs after the 1st shot!). Then if you don't see your VL dropping quickly, say clear by week 12 at the latest, you can save yourself another 36 weeks of grief.

fatboy · Answer

Pegintron and Pegasys are both interferons, but different types. Pegintron is alpha-2b and Pegasys is alpha-2a. Both appear to be equally effective (when dosed correctly) against the virus. Pegasys generally seems to be better tolerated. Ribavirin is Ribavirin even if it is called Copegus or anything else - no difference at all.
-Michael

TravisB · Answer

Sorry to hear about your relapse.  I am 2a and did 24 weeks of TX.  Two weeks after TX I tested clear.  Two months later I tested positive with a high viral load.  Like you, my first thought was to jump right back in again.  Now six months later, I'm not even considering it.  Take some time, recover from TX and then see what's in the pipeline in a year or two unless your biopsy reads very bad.  Try not to make any decisions right now.
Good luck. Travis

BillyV102 · Answer

You are what a person needs when they're really in the dumps.  Thank you for being there for me and all the others who send in questions. I am one of those with an HMO and no prescription coverage.  It covers everything else but that.  I am retired and I never thought I would get help for my Hep. C. Mainly  because I searched the internet for 6 months, and for one reason or another I was turned down for help.  Either because I made to much or it was a clinical trial 500- 2000 miles from home. I'm sure most of you know what I mean?  Finally I was excepted by a company under the patient assistance program. God bless them. They mail me my meds. each month.
Maybe you can answer a question for me? What is the big difference between Pegasys and Copegus and Peg-interferon ( Peg-intron) and Rebetol?  Aren't they both an interferon and Ribavarin?  Several people said I should be taking Pegasys and
Copegus instead of peg-intron and Rebetol for type 2 Hepatitis C.
I want you to know I have decided to continue on with treatment a second time.  Honestly it was because now it will be easier due to the fact I have someone to help answer my questions when my Gastro never did.  Nothing worse than being scared and having your meds do some wierd things to your body.  You want someone to tell you thats a normal side effect.  I had every side effect but no one to answer my questions.  I will get it delivered Monday or Tuesday. I will stay on longer this time and hopefully find a doctor whose got some compassion.  I want you to know that from the bottom of my heart I thank you. God bless!!!

cc2 · Answer

Sorry to hear your bad news.  I would take six months to a year off and then opt for tx or wait for a newer tx down the road.  I am 2b also and an svr at 6 months.  I go for my yearly at the end of September.  To be real honest, if this would come back I don't know if I could do tx again, I would really have to pray for a decission.  Take care and god bless...

MCN · Answer

I'm a 2b and I posted a few weeks ago. Did 48 weeks of Pegintron and 1200 rib a day (600morn/600eve). Was pos after 2 months off and my latest blood work shows elevated ALTs. The PA for the GI says that there is no connection between elevated ALTs and liver damage. This I find hard to believe but they are the experts.  I know there is no connection between viral load and damage but ALTs? As of this time they will not consider another dose of treatment. I should just hope for a new treatment to be developed. They said it would not improve my condition. They said they would do another liver biospy to see if there was further damage. According to the PA there is a 7-10 year gap between stages of damage.  I'm in my mid 40s so maybe I will make to 60 before my liver takes a dump.  

I'm really thinking of getting a new GI.
MN

lizzee · Answer

HI THERE,
MY DR. WANTED ME TO DO 48 WEEKS.
I ENDED UP DOING 46. MY RED AND WHITE CELLS DROPPED SO LOW AND AT THAT POINT THE DR SAID STOP TX.
SHE WANTED TO MAKE SURE I CLEARED THIS VIRUS AND I THINK SHE WANTED ME TO STAY ON IT DUE TO ME BEING A STAGE 3 BRIDGING FIBROSIS.
I AM CLEAR AS FAR UP TO 6 MONTHS.
I SHOULD BE GOING AGAIN SOONFOR BLOOD WORK.....I HOPE I AM STILL SVR.
YES, I AM A 2B...THANX FOR ASKING!!!
BE WELL,
LIZE  :0)

lackalustre · Answer

Lize:  did you have to treat more than once?  did you relapse?   just wondered why you decided to do 46 weeks?  glad u beat it!!  how long u been clear??

fatboy · Answer

Retreat for 1yr with different Interferon is a good choice.

If you do retreat, get frequent, reasonably sensitive PCRs done at short intervals initially to be certain you are responding. There is always daily Infergen to try if PegIntron or Pegasys is not causing the load to drop quickly enough.

There are other options too. FINALLY some geniuses published that PegIntron should be dosed 2X a week - all they had to do was apply some common sense and proper dosing would have been occuring for, what, a year now? 

God bless!   -Michael

oldhippiechick67 · Answer

Sorry to hear about your relapse.  I am 1b, on Pegasys, 6th week, saw the GI yesterday, he said see you in Dec. get PCR in Oct.  Big Whoop!  I dont know what to tell ya Billy about 2's but if I were to not clear the virus, I would probably try try again, get a different dr, etc ANYTHING to kill the virus. And yes I am having sides like a smorgasbord! And my dr is very lackadaisical about everything, "the sides shouldnt get any worse now"  "You are having trouble with extreme fatigue? would you like some speed? its like speed, its legal...ritalin you know?" to which I responded "what the hell do I need to be awake for? I dont work!! I lay awake for 2 to 3 hrs at nite before I finally fall asleep"    Then he hands me Rx's with someone  elses name on it!  OMG could I blend into the wallpaper any better??   He gave my Zyrtec for the rashes/itching/sneezing, and phenergan for the nausea.  Good luck to ya Billy and relapsers, fight it in spite of the dopey docs, and congrats to the one's who cleared it!  Hugs and luv to ya tx trekers, this forum has been my best friend!  OHC67

willing · Answer

relapse - what a truly miserable word. Sorry about the bad news - all the more so because of the sides you went through. The probability of relapse for 2-3's on a 24-week regimen of peg+800mg is about 12% (see relapse abstract). Doubling the duration of treatment or upping the riba is not generally seen as helpful for 2/3s). (This particular data is from a conference abstract only, the actual paper hasn't been published yet so we can't tell whether the low, 5% relapse for 48 weeks at 800mg is significant). The response rates for pegasys and peg-intron are very similar. Basically you're going to have to decide whether it's worth trying again or waiting for better treatment. In general, for re-treatment the stats are scarcer and not as good - however as a two your odds are so good it may well be worth it. Sometimes the dragon wins - but not for long!.

lizzee · Answer

I AM A 2B ALSO...GEEZ...I HOPE U CAN DO LONGER ON TX NEXT TIME.
I HAD TO DO 46 WEEKS.
KEEP US INFORMED!
LIZE

britgirl · Answer

He said he was taking 800mg a day; I think you read it wrongly. I also did 8000 a day with the Pegasys, 400 x 2.

latrobe · Answer

im also a 2b--we don't hear of many relapses here except for the type  1's. i'm glad you posted.  i havent had the three month post pcr yet..and i worry.  why did your doctor not use pegasys?
i would definitely treat again if i had to. i want this virus gone. you may find the side effeects are easier to handle wiht pegasys. stick around here and keep us posted.
best to you--
macky

lackalustre · Answer

hi:   did you do full doses of everything the whole 6 months?  usually the copegus (ribaviran) is given at doses of 800 mg. a day with the pegasys.  thats what im taking.
    i have one more shot to go with this tx.  im 2b also.  i realize that 2bs do relapse too.   personally i dont think i will go thru this again too much emotional/physical aunguish.    were you undetectable at 12 weeks?   im actually going 7 months on the tx. due to starting at a lower doseage, a high viral load, and they messed up my 12 wk pcr so i dont know if i cleared then.  but i was clear at 16 weeks.
   i have heard men relapse more than women.  and skinnier people who are white also relapse less.   just something i heard.  i hope and pray you will make the right choice and get good results.

Need to go back on tx

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