Has anyone quit Incivek before 12 weeks?

[hepcexperiment]

I got to 2 days before my 10th week and had to stop everything. I was crying constantly and had developed a terrible brain fog that made me unable to think clearly or do my 3 day a week job. I worry about lasting neurotoxicity effects. I gained weight even though I stopped eating the 20grams of fat because gaining weight was making me more depressed. I just laid in bed and slept for days and my body has gotten really bloated and swollen, especially my feet and legs. I was a very healthy 52 year old with no hep c symptoms prior to starting treatment. I cleared the virus at 4 weeks, and am hoping that virus is still clear - will know this week.

If anyone out there stopped all treatment before they were supposed to and has still remained clear of the virus, please let me know!! Am also interested in how long side effects last after treatment. Thanks!

[Dee1956]

Sorry meant to say I used you as an an example
I read the blog you created, it was really good
Thanks again

[orphanedhawk]

Thank you so much for returning and letting us know how things worked out for you.
And a very big congratulations on being hep C free !

[Dee1956]

Hey there so glad to see you back, thanks so much for coming back to tell everyone how you made out.
I have used you and some others to try to help people who could not do the entire 12 weeks of Incivek.  There are 4 of you that I know of who are SVR.
This is the best news
Congratulations!
Dee

[hepcexperiment]

yes willy agreed. I had Geno 1. am a healthy eater/organic only/no dairy for ten years (dairy hard for liver to process). Hopeful positive attitude in general, although hard to sustain while on treatment. I should add that I am also bipolar and had to stop taking some of my bipolar meds during treatment due to contraindications with the incivek, so this is another reason I stopped early - I was inconsolably depressed/sad. regardless, I believe that each of us knows our own body better than any doctor ever will and that it's imporatnt to listen to what your body is telling you. good luck everyone!

[didithesheep]

Good for you that it all worked out well!!
Congratulations!

Those are some serious side effects,BTW.

[pooh55811]

Congratulations on attaining SVR! It is wonderful that everything has turned out well for you. Best to you in your new Hep C free life.

[Willy50]

It's nice to see your outcome from this.  There was little data to support what would happen, but the little that existed showed that success probably was *possible*. (maybe not likely, but not impossible)

This probably wasn't an outcome available to everybody.  Numerous factors may have come into play; age, sex, genetic background/racial type, amount of liver damage/staging, il-28 genotype, starting viral load, BMI, early viral response kinetics, pre-tx HCV genetic subtype populations, etc.

My point in responding earlier was to share that I did not feel that it was impossible.
In time, if no new compounds & therapies were to be approved I think that the connections might have been further explored.

As is sits now, there seem to be several new drugs and therapies which may approach a 100% cure rate.  We may therefore never fully understand the mechanisms and what the odds were on this path to treating.  I know that Vertex was investigating via post approval trials what groups could treat in just 12 weeks with triple therapy.  

It might be sticking my neck out...... but I have to wonder what the outcome might have been if you had continued in spite of what seemed to be signs that you needed to cease TX?  

It must have been a tough decision at the time, but now in retrospect it seems clear that you and your doctor made a good (and in this case fortunate) decision.  I'm relatively certain that if 100 people did the exact same thing there would be a variety of outcomes.

It's always good to get an update and better still when it is good news.
Thanks for the update!

willy

[hepcexperiment]

I was the original person who started this thread. It's been over a year since I quit int/riba/incivek just short of 10 weeks and I am still clear of the virus and my side effects have gone away. a month AFTER quitting most of my hair fell out and i developed lymphedema in my ankles. i had side effects for aout 6 mths after but now I am fine.

[LynyrdSkynyrd]

10 years ago I was on Rib/Interferon. That was harsh, I had audible hallucinations and lost 40 pounds.

The first few month I started the triple therapy we easy. It barley had n effect on my. I becan to have rectal problems and the doc made a few suggestions that worked well. When I was on the toilet I was in so much pain I screamed and about fainted. The toilet tissue had a lot of blood on it and I quit.

A few days after I stopped the incivik I began to be severely itchy, it's a maddening thing.Doc suggested Benedryl but it didn't touch it. I doubled up on doses, the constant itching was making me crazy but again, Benedryl didn't touch it. That told me I was not experiencing an allergic reaction.

I went to the ER twice last week and they really had no idea what to do, I'm going to call the Poison Control center. Yesterday I was there, my body was giving out, I was lethargic, and had an over welming feeling of poor health.

Over all I just have to say that I feel a guinea pig.

I hope who ever read this can offer me some advice and I hope you are successful in your search for good health.

~Leonard, Denver Colorado

[Bull68]

I have completed my incivic therapy (full 12 weeks). . I was clear at 8 weeks, undetectable, and zero viral load. My doc says i still have 48 weeks of the int. and ribo. I'm just wondering if it's really necessary. My doc hasn't given me any other meds to help manage the side effects. The last 12 weeks have been absolutely brutal. My strain is GT1 but was only at the beginning of second stage. Does anyone know what the % of patients with hep c where symtptoms returned after successfully completing the 12 week incivic and stopping all other meds?

[Dee1956]

I just read it all WOW!  I can't believe how your doc treated you but I do believe it cause during my first triple trial I had similar horrible experience in my 48 weeks.  Thank God I found the doc I have now, I can call the nurse for many side effects and receive relief which was not the case the first time.
I am so sorry
I know it is awful, I am only on week 6 but I am doing the best I can
I wish you the best and I hope you find another doc.  As others have said, there are people on here who have had to stop their meds for a week even two and then continue (talking about INF and Riba, not Incivek) is that possible for you or did I misunderstand?
Good luck
Dee

[working dog]

your doing great....good luck....billy

[Dee1956]

Good Morning, I just woke up so all I have read so far is the first question.  A few weeks ago domeone had to stop at either 9 1/2 or 10 weeks due to severe side effects and I think it was the doctors idea
I have to say that the Incivek is horrible.  Saying that, I want to live so I have committed myself to this tx.  I feel awful right now.  Many mornings I wake up and cry at the thought of another day of burning discomfort (did I say discomfort? I think I am being tortured) I might be a better cheerleader once I have had my coffee :)
I wish you all the best.  I will get some coffee and try this again :)
Dee

[hepcexperiment]

yes plan to chk again mid Oct which would have been 12 wks. will post results.

[willbb]

Good luck ..and hope  it works out for you. If virus is going to come back it will most likely do it before 6 months ..so possibly have another PCR in about a month or so if you do not want to wait so long to know. let us know how it goes..
Will

[hepcexperiment]

finally spoke to doc and he said the treatment was too horrendous for me and he strongly feels stopping was the right decision. he is very optimistic given my history that I will continue to be clear. 6 mths will tell. fingers crossed. thanks for all your input. today was a difficult and confusing day for me.

[hepcexperiment]

thx. yes if i could only get him to speak with me. his girlfriend has taken over the office and will not pass on messages or help in any way. last night i called the office expecting to get a service that would page the doc but instead the girlfriend answered and i hear her roll over in bed and tell the doc it was me and the she began to dispense medical advice and refused to let me speak with him. entirely unprofessional and frustrating and crazymaking.

[willbb]

oh  I just saw that last post were your doc siad to qiut..then you should always do what they recommmed...no -one here is a doctor and it would not be right for us to suggest you do anything that your doc recommends...however  he may suggest re-starting

[willbb]

well...it is poison to some extent and it sounds like you were having a tough time...however if you can get rid of the virus ,,and you have a great chance of that because of your 4 week clearance then can you continue ..and get in to see the doc ASAP   but you can not start the incivek,,,howeve you may have got enough of it for a good result....

I am not advising you to start again ,,,,however I am just saying this treatment regime sounds like it still may be salvagable if your doc is ok with resumption

[lynda607]

At this point resistant variants may very well have developed.  If you restart the P/R at this point, the best you can hope for is that you have a favorable enough response to the P/R so that it suppresses and virus and keep it that way.   You have a lot of variables working against you at this juncture but anything is possible.  

[hepcexperiment]

yes doc told me to quit all last wed

[hepcexperiment]

yes. i decided to stop because i am very in tune with my body and i felt like it was saying that it had healed itself but now it was just poisoning itself.

[willbb]

Does you doctor know that you quite and what was his recommendation or he doesn"t know??

[willbb]

she can stop incivek now with not much difference in results