anyone fail the incivek riba peg treatment

Well i just got the bad news my viral load is back  490,000 {the same as it was before I started the treatment} .I completed  the triple teatment cleared the virus but after the 6 month blood test it showed it<s back. Not sure where I go from here looking for some type of input  Thanks

[pooh55811]

I am very sorry to read that you relapsed. I know it much be devastating for you.

(At least it appears that you relapsed. If you had an undetectable viral load at the end of treatment but then showed detectable virus 24 weeks after the end of treatment, then it was a relapse.)

I think right now you can take the time to recover from treatment, research into new treatments which are still in trial/study, and prepare for treatment at a later date with one of the new regimens. You cannot treat again right now. There is nothing else on the market (for the general public) with which to treat. Also, You need to wait a bit for the virus to return to wild type virus and that takes a while, a few months. Then you most likely will be able to  treat with the newer drugs when they come on the market, or possibly get into a study.

There are a few others on the forum who have relapsed or had break throughs. Hopefully some of them will respond.

Visit the forum often. It is a good place to get support and also to learn of new studies, treatments, information.

Best of luck.

[copyman]

Sorry to hear the bad news.
First thing I would do is get re-tested from a different lab. I know it is a shot in the dark but I have seen samples get tainted in labs. I hope this is the case for you.
No matter what your liver got a much needed break during TX. So hopefully this will give you time for new and better drugs to come out.

Best of luck

[gene53]

I'm with ya man. I made it to 38wks and it came back <43 so they pulled me off tx.  I don't know your stats but this was my 3rd attempt so now they say interferon and me don't mix. I am hoping my liver holds out long enough to try one of the newer GS drugs but unless we can get into a trial they say they won't be available for a couple of years or so.
You might check with your doc about the next step and see if there will be any trials in your area you may be a candidate for. Most likely interferon doesn't work for you either.

Real sorry to see this didn't work for you and like copyman said at least the tx gave both our livers a little break.

Hang in there and hopefully something will be available for both of us soon.

[rambleon40]

Saying that INF combo treatment gives one's liver "a break" is a mistaken notion.

It's often just the opposite.

[gene53]

Saying that INF combo treatment gives one's liver "a break" is a mistaken notion.

It's often just the opposite.

That may very well be and I have heard of at least one guy on here that the tx made him worse and now he needs a new liver. I am definitely no expert just a guinea pig. Since I was UND through my tx's until the end of my last tx and my Hepa doc said the tx gave my liver a break I just took his word for it.
Maybe others will chime in about this but either way at least as far as I know which isn't to far, all we can do now to kill this virus is wait and hope for a new drug like the GS stuff. Least in my case doing nothing is not an option.

[Gerbils]

I am so sorry for you both.I also hope you are able to get into a new study as soon as you are able and beat this thing. I do remember one other person who triple therapy failed for and that is BeeBlessed. Which drug were you on Incivek or Victrelis? I know Bee was on Victrelis. Again I am sorry to hear this and hope that you future cures can be acheived with kinder drugs.
G

[Gerbils]

I went back and saw that you were on Incivek. I assume gene53 was also. That is a tough drug and I repeat my wish that you get cured by a kinder drug.
Best wishes,
G

[frijole]

Wow - I am really sorry to hear about your relapse. In answer to your question, yes, there are others who have relapsed.  I keep stats, mostly on people in the forum who started in 2011 and you can go to my profile and look at pictures - charts.  The success rate is great but not perfect, by any means.

Had you treated previously?  What is your liver condition? When did you get to UND?  I would like to add you to the chart as it is important to show the failures as well as the successes).  When did you relapse?

I hope you have time to wait for the drugs still in trial.  Meanwhile relax and heal.  

my opinion on treatment failure and giving the liver a break is that you may have given the liver a break for the 24 weeks of the treatment but that is it.  Once the inflammation begins again after relapse there is not normally any residuary benefit.

frijole

I have treated and failed before so I know how you feel.  In a month I will know if the PI has worked this time.  

[Advocate1955]

rambleon:  "Saying that INF combo treatment gives one's liver "a break" is a mistaken notion.  It's often just the opposite."

My husband's hepatologist, who is the chief of clinical hepatology at the Liver Care and Transplantation Services Clinic at the University of Washington Medical Center, has told him after each of his three failed interferon based treatments that he has given liver a break.

justaboutenough:  I'm sorry to read about your relapse.  My husband, like gene53, had a viral breakthrough during triple tx with Incivek.  His breakthrough occurred at about weeks 20-24.  Since my husband has Cirrhosis, we see his hepatologist every 6 months.  At that time she does lab work and some type of imaging.  In May it will be an ultrasound of the liver.  Depending upon your stage of liver damage, you should be seen regularly to 1) screen for advanced liver damage, and 2) screen for cancer.  At those appointments you can ask if there are any trials that your doctor feels might be beneficial to you, and you can ask about new treatments that might be available within the next few years.

Advocate1955

[rambleon40]

Thanks, I'll write him.  (Carithers?)

I guess maybe if you are side-effect free and clear the virus for a period of time it might "give your liver a break."

All the journal articles and the black box warnings on the drugs and a lot of anecdotal evidence on this forum and from folks I know and as to myself, INF certainly does not always "give the liver a break" and in a significant number oif cases actually accelerates damage.

My apologies for being a stickler, but I certainly do not want a casual reader who is contemplating therapy to think "Well, what the heck, worst thing is, I give my liver a break!"  

see, eg   http://www.medhelp.org/posts/Hepatitis-C/Advise-What-should-I-do/show/1865773#post_8649289

[rambleon40]

"Thanks, I'll write him.  (Carithers?) "

that's silly. no i won't.

I have exchanged e-mails with a few, though, including dusheiko

[yodennis]

I am also curious (forgive the indulgence) about your details...How many blood tests did you have post treatment? Just one (negative) at treatments end and one 6 months post treatment (positive)?  Did you have any between the end and 6 months. Did you treat for 48 weeks? Staging?......Having asked all this....I am earnestly sorry to hear of your betrayal since taking the pain (triple tx.) and defeating the virus only to have it reversed must feel like a betrayal! My best. d

[Advocate1955]

rambleon40:

Dr. Robert Carithers is the head of the UWMCs liver care services and the medical director of the liver transplant program.  He is not my husband's hepatologist.  My husband's hepatologist is the chief of clinical hepatology at the UWMCs Liver Care and Transplantation Services clinic.  At this particular liver care clinic, it is an entire team of people who work together to provide care to patients with liver disease.

rambleon40, as I've mentioned to you several times on this forum, I do understand that Interferon has difficult side effects and for some people there are long term side effects.  These side effects (both short term and long term) vary from individual to individual.  

In my husband's personal experience, he has treated and failed treatment three times.  All three treatments included Interferon, one of which was daily injections of Infergen (another variety of Interferon).  He had short term side effects during and for a short time after (2-3 months) each treatment.  The short term side effects during treatment included cold/flu symptoms and fatigue.  The short term side effects post treatment for 2-3 months included fatigue.  Unfortunately, none of these treatments worked for him.  He was a partial responder to the first two treatments and had a viral breakthrough with the third treatment.  Because he has Cirrhosis, he felt with each treatment that doing nothing was not an option for him.  He felt that the potential benefit of curing his Hep C and preventing further damage outweighed the potential risks of treatment.

Whether or not to treat is each individual's choice, rambleon40.  Yes, Interferon has difficult side effects, but the severity of side effects varies from person to person.  Interferon has saved lives and has saved livers.  There are people on this forum who have posted that fear of side effects of Interferon caused them to delay attempting treatment causing them to develop advanced Cirrhosis, liver cancer, and/or End Stage Liver Disease.

I want to again say that when you post things that scare people to the point that they are afraid to attempt treatment or delay treatment, you may be contributing to people progressing into advanced Cirrhosis, liver cancer, or End Stage Liver Disease when it is then too late for them to attempt treatment and they may have no other options besides death or transplant.

For those reading this thread who are treating either with SOC or triple tx, be thankful if it works for you.  It hasn't worked for my husband yet, and we don't know if his liver will still be well enough for him to try another treatment when one becomes available.  I know that if his liver is well enough and if his hepatologist recommends it, he will treat again, because doing nothing is not an option for him.  It is his choice to be aggressive in his treatment of his Hep C whenever he has that opportunity and his hepatologist recommends it.

For those of you who are considering treatment with SOC or triple tx, but are afraid of the side effects (short term and/or long term), please know that treatment is easier and has a higher rate of success before you become Cirrhotic.  Please know that if you wait until your liver is decompensated, you will be too ill to treat and you will have no other options than to face possible End Stage Liver Disease, liver cancer, liver failure, or death without a life saving liver transplant.

As patients, we each have the individual responsibility to read and understand and weight the benefits and risks of treating vs. not treating Hep C.

Advocate1955

[uncledudeness]

I am truly sorry to hear that you relapsed. when I got the news I was devastated. but i am back in treatment and I am hoping it will work this time. try to stay positive and look into the new drugs that are in clinical trials. you'll get it next time....

sidenote to rambleon: i have been reading your rants about the long term side effects of Interferon use. do you really think it's a good idea to hijack this thread with your negative comments?

this member is dealing with shattering news. Can you at least be sympathetic ?  

[orphanedhawk]

The first time I did tx, ( 2006-2007) a fellow member and I who was also doing, it became friends.
She relapsed and considering whether she should try again last year had a biopsy.
She was so happy to see her fibrosis had gone from stage 3 to stage 1.

Many people land up with their livers in better shape after treatment because during tx, while they are und, their livers are not fighting hep C.

My hepatologist who attends most all of the liver research meetings, told me that it would help my liver ( give it a break) even if I did not reach SVR.

Our liver's health is the main reason most people do tx. So, don't despair, it's very disappointing but if you take good care of your liver, you should be able to beat the virus with the new orals coming down the pipeline.

[Greta2012]

I feel your pain!  I treated for 24 weeks with incivek and just found out that I didn't clear the virus, needless to say I was devastated.  I don't think we can do anything right now except wait for new treatment.  I'm hoping the next round isn't so awful and I don't lose any hair!!

G

[Dee1956]

I am so sorry to hear about your relapse.  I relapsed in 2009 and was devastated.
I went on to treat, this past year and am now free of the virus.
I wish the same for you as well.
My doctor, Heptologist, Georgetown, told me that my liver was given a break when I treated for 48 weeks back in 2008.  He said that when I was UND my liver was no longer being attacked by the HCV.

Advocate, I wish you and your husband the best.  

Gene, again I am so sorry you relapsed, I pray that you can wait for the new all oral

[BoceprevirGal]

  All of us who have treated have so much hope, time, energy and pain, invested in this nerve-wracking Treatment.  Some cure, some relapse, almost all have side effects, and sometimes the side effects dont go away after treatment.
   But the most devasting thing is going thru all this time and pain, and having a Viral Relapse.  I am sure only someone who has gone thru this Tx, can fully understand what we go thru with this Tx.  Give yourself time to mourn, and keep your hope. The Interferon Free Tx is right on the horizon.  It will be a highly effective and much easier Tx.
   You did a commendable and brave job, completing such a difficult Treatment, so make sure to pamper and reward yourself.

[Joeo10]

Hi I finished my 2nd attempt to beat hepc with cirrhosis, I have been post treatment for 5 months and am still undetectable.  I hope this will inspire many to see there treatment out. I know how hard it can be I had the Incivek rash over 70% of my body. Dermatology wanted me to stop all meds however my Dr. said it was from the Inivek so I only stopped it. Since I had taken it for 8 or 9 weeks it was long enough.Well if I can help others I would be happy to talk to you.   My name is Joe E-Mail at caromjoe@comcast .net.   God bless u all.  

[HaveFaith4Me]

Don't give up. My boyfriend also relapsed after 6 months of treatment we are still devastated so I'm sure you are. I'm very sorry for your bad news but please don't give up. There are other treatment options that may be available in the future.