first the good news...

[pjhep80]

still undectable at week 24... however... the dr wants me to do another 6 months because i treated before... i told them AGAIN that i never treated with Riba/peg only with peg and virimadine on a blind trial and as far as i know virimadine was a failure for a lot of people... so now they are consulting with the pharmacy.... and they want me to go to a dermatologist about the thing on my forehead that wont go the hell away... and my hair continues to thin ...another 6 months i will be freaking bald... but i should stop complaining... still undetectable ...

[micheall]

I didn't know that.I'm sorry.Please forgive me.Yes I joined on my 2nd week on Incevek.The anal problem was so bad,I wanted to quit.But after joining ,My confidence came back.Best thing I have done .I am learning a lot since joining.I like to share ideas,especially on the side effects.I was so into the brain fog I was babbling idiot.

[micheall]

I will ask my dr next appt.

[orphanedhawk]

"Last year I took the old tx for 11 months,last 9 UND.The follow up,it is back.I took about 6 months off before starting nem tx with Incevek.That"s when I joined this community"

Your profile says you joined in January 2012.
        *****************************************
Look as someone who really did almost die from hep C, (I was living on 8% of my liver at the time of my transplant) I'm getting very tired of hearing you repeat your painful story over and over and over.

I know what its like to live through End Stage Liver Disease, I don't dwell on the pain I went through and I don't blame anyone or anything for my situation in life.

What keeps me alive and happy is my attitude.

Life is a gift, enjoy it while you can.

[1oftheclub222]

what stage is your liver at from your last biopsy?

[micheall]

Last year I took the old tx for 11 months,last 9 UND.The follow up,it is back.I took about 6 months off before starting nem tx with Incevek.That"s when I joined this community.At first from the brain fog,I was talking like an idiot.The more I stayed on,I have learned a lot.We exchanged ideas,med ideas,and recipies and other helpful advice.I got a lot of help in this community.I did 11 weeks of the new tx untill I was unable to finish.Now I am scared,confused and very disappointed.I did want to share my experience of hell and almost dying so it will never happen   to these great people in the community.Sure I have made mistakes from being inexperienced and brain fog.But I needed help.I even asked for your help.I got no reply from you.I have to wait till my next appt to find out if I won my battle or not.Till then I am on treatment for the red rash and the itch is unbearable.I am shaking so bad,I have to type with one finger held by my two hands.I am a mess.I haven't slept for 5 days  because of the itch.It was this community that gave me the idea to use ice for the itch.It worked for me.I ice down before bed.I want to pass this along of the many ways I have found to deal with the side effects and help the others so they won't suffer from the side effects.

[micheall]

I have been getting liver biopsies every 5 years and blood tests every year being monitored for years.But I cannot stop my age.I told my dr I didn't want tx till something new comes along.I think now my liver is better than 50/50 because of all the tx's.But I wil know more next appt.

[can-do-man]

My understanding on Incevek it is 12 weeks for Incevek and another 24 of pegesys and ribavirin ,18 weeks on victrellis and 24 of the other two.Why am I reading of people having to do 48 weeks?

You really should at least understand the treatment times before you give out info about other things, see you might just be wrong as your not even close when it comes to how long people should treat.

[nygirl7]

You are reading it because you are looking to find things to slam treatment about and to post repeatedly about it.

To those of us in here, it is all logical and after watching the clinical trials become an FDA approved set of new drugs we understand what is going on.

Perhaps, reading about the miracles they are doing would be a better way to spend your time than to repeatedly try and talk people out of the meds.

Again.  They have changed the landscape of having HCV and new drugs will be even better someday.

[hrsepwrguy]

2.7.1 Duration of Treatment in Treatment-Naive Subjects
In subjects who have had no previous treatment for HCV (treatment-naive), treatment with telaprevir must be initiated in combination with Peg-IFN and RBV and administered for 12 weeks.
• Subjects with undetectable HCV RNA at Weeks 4 and 12 receive an additional 12 weeks of Peg-IFN and RBV alone for a total treatment duration of 24 weeks
• Subjects with detectable HCV RNA at either Weeks 4 or 12 receive an additional 36 weeks of Peg-IFN and RBV alone for a total treatment duration of 48 weeks
HCV-RNA levels should be monitored at Weeks 4 and 12 to determine treatment duration.
Treatment with telaprevir should be discontinued in subjects who do not have an adequate viral response during treatment.

2.7.2 Duration of Treatment—Previously Treated Subjects
In subjects who have had previous treatment for HCV, treatment with telaprevir must be initiated in combination with Peg-IFN and RBV and administered for 12 weeks. Subjects who had a partial response to previous treatment (partial responders) or minimal response
(null responders) to Peg-IFN plus RBV receive an additional 36 weeks of Peg-IFN and RBV treatment alone for a total treatment duration of 48 weeks.
In subjects who had relapse after previous treatment to Peg-IFN plus RBV, a responseguided regimen is recommended.
• Subjects with undetectable HCV RNA at Weeks 4 and 12 of telaprevir-based treatment receive an additional 12 weeks of Peg-IFN and RBV alone for a total treatment duration of 24 weeks
• Subjects with detectable HCV RNA at either Weeks 4 or 12 of telaprevir-based treatment receive an additional 36 weeks of Peg-IFN and RBV alone for a total treatment duration of 48 weeks
Telaprevir must be dosed with Peg-IFN and RBV to prevent treatment failure.

http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252562.

Treatment Futility Rules: All Patients
HCV-RNA  Week 4 or Week 12: Greater than 1000 IU/mL Discontinue INCIVEK and peginterferon alfa and ribavirin (INCIVEK treatment complete at 12 weeks)
Week 24: Detectable Discontinue peginterferon alfa and ribavirin

Laboratory Tests
HCV-RNA levels should be monitored at weeks 4 and 12 and as clinically indicated. Use of a sensitive real-time RT-PCR assay for monitoring HCV-RNA levels during treatment is recommended. The assay should have a lower limit of HCV-RNA quantification equal to or less than 25 IU/mL and a limit of HCV-RNA detection of approximately 10-15 IU/mL. For the purpose of assessing response-guided therapy eligibility, an “undetectable” HCV-RNA result is required; a confirmed “detectable but below limit of quantification” HCV-RNA result should not be considered equivalent to an “undetectable” HCVRNA result.


http://pi.vrtx.com/files/uspi_telaprevir.pdf .

[micheall]

I am seeing too many posts of people being told to stay on further on the new tx.My understanding on Incevek it is 12 weeks for Incevek and another 24 of pegesys and ribavirin ,18 weeks on victrellis and 24 of the other two.Why am I reading of people having to do 48 weeks?

[1oftheclub222]

have you had a liver biopsy?  do you know what stage your liver is at? Are you sure there is no damage to your liver at this time?

[micheall]

I have hep c 1a.I am 63 and put off treatment for decades.My dr suggested the tx's before I get to old to do treatments.

[nygirl7]

IF you dont have liver disease why would they ask you to do treatment? That makes no sense, were you on it for cancer or MS or something? Do you just mean interferon by itself, saying 11 months (by the way I did 18 months) makes it sound like 48 weeks of treatment for HCV, liver disease.

[willbb]

No I do not have liver disease

-------------------------------------
IThe OP asked a question regarding opinions  and support on "her" treatment time.

Do you have info or an opinion for her specifically?

Will

[micheall]

No I do not have liver disease.But my dr recommended the tx's anyway.I should of waited longer for treatment but my dr says the longer you wait,the harder it will be to treat.

[nygirl7]

Good luck PJ you CAN DO IT!  Why take the chance...go for the gold - you dont want to go down this road ever again and we want to see your SVR post!!!!!!!!!   :D

And yes we get it Micheall all of your problems are do to with treatment and not the liver disease you have...ok.....see if you didn't have it perhaps you would not have the problems.  Just sayin.

[micheall]

I am sorry but I needed to get my message out there so this hell I went through doesn't happen to anyone else.I must of over treated and my health was at risk.I am getting ready to start a new thread as soon as I see my dr.I want to report fact,not what I think.

[crigger]

Man That really *****!!   I think I would nut up if they changed me at the last day. Sorry you are having to go through this.

[willbb]

If you were a prior" partial responder "(>2 log drop by week and stopped tx. before becoming UND.)  then the recommended dosing is to do the full 48 weeks.

should have read (>2 log drop by week 12.......

[willbb]

Congratulations on your being UND. at week 24.
Because you have been exposed to INF. and a RIBA type drug previously your doctor is correct that you are tx. experienced..

I am sorry I don't remember what you posted about your prior results ,however if you were a " relapser "(cleared the virus while treating and then were virus became detectable sometime after ceasing tx) then this current therapy ,because you were UND. at Wk. 4 & 12 you should only do 24 weeks total.

Studies for Inci showed in  this circumstance the chances of success are no better doing an extra 24 weeks or even 12 weeks and  the extra exposure to these drugs would have no benefit vs. the risk.

,If you were a prior" partial responder "(>2 log drop by week and stopped tx. before becoming UND.)  then the recommended dosing is to do the full 48 weeks.

If you proceed according to the dosing protocol with the RVR this therapy you have an excellent chance of SVR..

Good luck..
Will

[orphanedhawk]

My hepatologist is usually willing to compromise, he'll do whatever it takes to keep me on tx.

How experienced is your doctor? Do you trust his judgement.

You do need to listen to yourself and you need to tell your doctor all your side effects. My interferon dosage was  recently lowered due to my side effects.

Micheall~I agree with Fret.
I'm actually getting tired of you repeating your sorry story about your unfortunate treatment experience whenever you post. It is not often relevant to the poster's situation.
The idea is to be supportive, compassionate and helpful whenever possible.

[fretboard]

Glad to hear you're doing well, good luck with the rest of your journey.  

Michaell,
Sorry you had a difficult time with Incivek and almost died but you would be better served to just start your own thread.  jmho

[pjhep80]

compromised with my doctor he said just do 12 more weeks .. 36 weeks total...  then we will see whats up... i said oh all right dammit... lol

at that point i will prob just continue on to the 48 he is just playing with me now hehe

ok im better now thank you everyone for letting me vent it out... baring any terrible sides (like what you had micheall wow that is horrible) i will soldier on...

have a good night everyone

[micheall]

Do not do what I did.My first tx was last year for 11 months.Last 9 months UND.Next month follow-up.It is back.My dr tells me of Incevek and Victrellis.I said I wanted to take a break before starting new tx.About 5 months latter I started new tx.My dr assured me it will work,seeing my blood work viral load went from millions to 750,000.I told him i wasn't sure,seeing that the new drugs are inhibitors.This stops the hep cells from dividing and multiplying.He reassured because of that,I would succeed in getting rid of the rest of the hep.I think he was sold on the idea from the drug companies.I had a gut feeling it wouldn't work but started anyways.I got remarried during my break and she has custody of her 5 year old grandson,and i am contagious with hep.On the 2nd month of Incevek,I learn in this community there are 8 levels of hep c.I asked my dr what I was.He says I'm a 1a.I should of stopped tx then,but again dr says to continue.I get a call once a week from a nurse from Vertex,the maker of Incevek about my condition and tx.But she kept asking the same question.Do you see any kind of a rash.I said no.On the 10 week I get a red rash.I see my dr and he tells me to stop the Incevek and continue with the Pegesis and Ribavirin.Week latter I get Anaphylaxis.I almost died.I was rushed to the hospital and into ICU.My blood pressure was 71/40.My kidneys were weak,I was covered head to toe with a red rash,my face swelled up so bad(I left a picture of the elephant man in my profile) no one recognized me.I get 3 units of blood,IV for anti-biotics for the face swelling and kidneys.They tried to treat the rash with fair results.I think I was on tx for too long.My tx weakened my system and resulted in Anaphylaxis,bad bone marrow,and weak kidneys.I gave my tx 110% of myself to get rid of the hep.Well something attacked me within,and I had no defense.I hope this never happens to anyone else.