stopping victrelis wk 20

[robson1968]

I  have hep C type 1a my viral load was 67million. I started treatment on Oct 2nd with pegysus proclick and ribivirin,and started victrelis nov 4th.my viral load was undetectable by week 5 and my HCV was undetectable I'm.on week 18 of taking victrelis.I was told to stop taking the victrelis in week 20.I've had 2 blood tranfusions since being on the treatment due to anemia.I also take procrit but really doesn't do anything for my RBC levels.I'm kinda worried about stopping the victrelis because from want i'm told its a minimum 24 weeks.Has any one else heard of this?

[robson1968]

ty very much pooh

[pooh55811]

Great that you have completed treatment. Wishing you SVR!

[robson1968]

well i got news today that after 28wks of pegasys and 24 wks of victrelis my nurse called and said im done with treatment.my insurance co.considers me cured! i will be getting labs once a month to see if the hep c stays at bay.fingers crossed!!

[robson1968]

And I thank you all for your support

[robson1968]

I noticed after i posted my liver dr is a hepatologist not hemotologist. I have every intention of finishing the treatment.@frijole,This is my first time on treatment and i pray the last.It has been pretty rough as you all know.I didn't do a biopsy didn't care for the odds.@hrsepwrguy,Those are they dates I figured as well 4-19-13 to stop the shot and pill a wk later 4-25-13.They told me i stop victrelis 4wks prior to stopping my shot well that would be cutting my victrelis a few wks shy of 24 weeks. So you see my confusion on the dates.I was just curious as to why they told me to stop the victrelis on 3-31-13 I sure appreciate all you guys/gals for your help and input on this..

[pooh55811]

I agree that you should be being seen by a Hepatologist for the treatment of your Hep C.

I also agree that you should do everything you can to finish treatment per guidelines/recommendations. Finishing/completing treatment will give you the best chance to attain SVR/cure.

Perhaps your Procrit dose can be increased. Perhaps you could have more transfusions. You said you have had only 2 transfusions. Perhaps more could allow you to stay on treatment for the recommended length of time.

Stopping earlier decreases your chance to attain SVR/cure.

Wishing you the very best.

[hrsepwrguy]

I started treatment on Oct 2nd with pegysus proclick and ribivirin,and started victrelis nov 4th

I started treatment on 10-4-2012 with the interferon
Started victrelis on 11-2-2012

The second set of dates work out right and the vic was started on time, your last shot should be on 4-19-13 and your last day of pills should be 4-25-13

As far as stopping the vic early you have gotten some great advice

Have a great day

[frijole]

Have you treated before?  What did a liver biopsy show?  I checked your profile and see that this is your first post  .  Welcome to the forum
frijole

[frijole]

got to agree with can-do. Are you ONLY treating with a hemotolgist (blood specialist)?  He might be more concerned with blood levels than sustained viral response.  Your hemoglobin is not great but you seem willing to continue and to be able to continue. It is concerning that transfusions are only lifting your hgb to 9 and I know that is hard.  But you had 1.4million vl with interferon and ribavirin alone, so it is the Victrelis that is helping you achieve the UND.  If possible try to do your entire 24 weeks of VIC - it is only one more month.

[can-do-man]

Treating HCV with a hemotologist is really not such a great ideal, see if he will refer you to a hepatologist on finishing treatment... This is your life and to be honest whether he is well known or not he is out of his league treating HCV

[1swimmer]

Friday the 12th of April would be the start of week 24 for Vic if you were to do the full course of Vic. I counted on the calendar until I was dizzy.
C

[robson1968]

I had my labs drawn before treatment on 9-17-2012 and my HCV RNA was 67,429,000. I started treatment on 10-4-2012 with the interferon.On 10-5-2012 started ribivirin.Had labs drawn again on 10-10-2012 and my Hep C Quantitation was 1,458,850.Started victrelis on 11-2-2012 (29 days) after taking interferon.Had labs drawn again on 11-7-2012 and it says Hep C RNA-PCR Negative and HCV-RNA not detected.My doctor is a well known hemotologist.They did not reduce my ribivirin.His nurse calls me weekly to tell me if i need a procrit shot.She told me she wanted me to stop victrelis 3 weeks and continue the interferon for 4 more weeks and stop ribivirin a week after.Should i ask them to cut the ribivirin down? Also my thyroid level has doubled from 4.2 to 8.6 with medication if thats a reason

[1swimmer]

Hi there. Just wanted to note that if you started your Vic on nov. 4th you are actually on week 19, not 18. So that is the good news. I am hoping you can get some clarity with your medical team, as to give yourself the best shot at achieving SVR. Fight to stay on the meds. Best to ya.
C

[can-do-man]

Just want to make sure. I would press doing the full 28 weeks with Vic and ONLY if he refuses would I insist on finishing with just Peg and Riba, as for when viral loads were taken or starting a few day late on the Vic that doesn't matter now............ Only with the Incivek is the 4 week viral load really important..

[can-do-man]

I wouldn't be so much concerned about having the viral load at week 5 instead of week 4 because at 8 weeks with the Vic is the main one. Is your doctor suggesting just ending the Vic yet going on with the peg and Riba? As for when you started the Vic it looks as if you were only off by a few days. I have to say you had a very fast response to what would have been just SOC if you were und at week 5.

Myself I would want to do the full 28 weeks with all 3 meds, with your response I wouldn't want to risk what looks like a sure SVR... If nothing else I would at least see if I could continue with the Peg and Riba until 28 weeks... Stopping the Vic should help your HGB rise enough to get you through the rest of treatment............ Best to you

[Idyllic]

Sorry to be so dramatic. It was my hope to inspire you to understand
what is known as the "standard of care" (SOC) for Triple therapy
with Victrelis ~ and how it sounds like your treatment has deviated
from it.

Honestly. if you are feeling OK then I encourage you to arm your
self with information and explain all this to the nurse.

You would not believe how many people who have come on here
whose doctors do not have that much experience with these new
protease inhibitors and perform labs at the wrong time and do
not know how to manage the side effects.

It is amazing and and shocking and awkward but this is not uncommon
with treating for Hepatitis C/

This is a disease where you have to learn about the treatment.
Maybe you could get a referral to a hematologist.

I hope others post. There is a lot of
support on here

Best of luck

[Idyllic]

Hemolytic Anemia is a known side effect of both Ribavarin and the Victrelis

Here is a link (plus there are threads on the forum)

Victrelis is the trade name for Bocprevir
http://www.hivandhepatitis.com/hepatitis-c/hepatitis-c-topics/hcv-treatment/3583-easl-ribavirin-dose-reduction-and-epo-both-work-for-managing-anemia-in-patients-using-boceprevir

[Idyllic]

I am wondering about the dates hrsepwrguy is mentioning.

I do not want to alarm you but if the sequence of events is as you state then your doctor is really off his game. That is a nice way of saying he does not know what he is doing and it is amazing you are UND.

Are you in America? Different countries have (what I consider primitive) different views on handling hemolytic anemia that comes with triple. But since you have taken Procrit then it sounds like your Procrit could be rearranged or increased.

Here is what leaps out
1) you are supposed to have a viral load at four weeks
yet you say you had yours at week 5 (?!)

2) you are supposed to start the Vicrelis at four weeks
Yet you started it what the 33 - 34 day mark?

3) The first intervention when your Hgb drops to 10 is to reduce your Riba
Did you do this?

Transfusions and Procrit are also used but when your HGB drops like that there are several ways to manage anemia. Hgb is used as an indicator (not RBC)

This is sounding really messed up. I would be freaking out if I discovered my chance at getting rid of a blood borne infectious disease like Hepatitis C were jeopardized in such a manner.

I strongly encourage you to go over all your copies of your labs (hopefully you have them. If you don't then ask for them) and determine what has happened and when.

Given there are no other extenuating circumstances or medical conditions then I hope I do not offend you by saying your doctor telling you to stop taking the Vic is a HUGE red flag something is amiss.

Be sure you understand what your doctor has said and done up to this point correctly. Post again and clarify the details. Add more about your health, situation, stage of fibrosis and whatever you feel is important. The links and info that have been provided ought to be enough to show your doctor

http://www.treatmentactiongroup.org/hcv/factsheets/victrelis-boceprevir
http://www.medhelp.org/user_photos/show/284656?personal_page_id=414409

You are UND which is great but you deserve the full benefit of the HCV meds to clear the resistant strains of the virus and hopefully prevent relapse.

[robson1968]

That is correct i was told to start on that date by my doctor.However my nurse called me yesterday after she got my lab results.My hemoglobin was only 9.0 and was 8.2 before i got my transfusion on Tuesday.It seems she is concerned with my consistent low RBC.My 24th week of victrelis would be April 19th and stop the interferon on may 23rd and then stop ribivirin a week later.I'm just curious as to why  

[hrsepwrguy]

I started treatment on Oct 2nd with pegysus proclick and ribivirin,and started victrelis nov 4th

Let me see if I have this correct, you started treatment (inf/riba) on 10-2-12 which means you should have started victrelis on 10-30-12 (after 4 wk lead in) along with your 5th injection, however you didn't start victrelis until 11-4-12, is that correct ?

[hrsepwrguy]

Victrelis Combination Therapy: Patients Without Cirrhosis Who Are Previously Untreated or Who Are Previous Partial Responders or Relapsers to Interferon and Ribavirin Therapy

•Initiate therapy with peginterferon alfa and ribavirin for 4 weeks (Treatment Weeks 1–4).

•Add Victrelis 800 mg (four 200-mg capsules) orally three times daily (every 7 to 9 hours) to peginterferon alfa and ribavirin regimen after 4 weeks of treatment. Based on the patient's HCV-RNA levels at Treatment Week (TW) 8, TW12 and TW24, use the following Response-Guided Therapy (RGT) guidelines to determine duration of treatment (see Table 1).


Table 1 Duration of Therapy Using Response-Guided Therapy (RGT) Guidelines in Patients Without Cirrhosis Who Are Previously Untreated or Who Are Previous Partial Responders or Relapsers to Interferon and Ribavirin Therapy

Previously Untreated Patients
ASSESSMENT  (HCV-RNA Results)

At Treatment Week 8                
Not Detected

At Treatment Week 24
Not Detected

RECOMMENDATION
Complete three-medicine regimen at TW28.

http://www.drugs.com/pro/victrelis.html

[hrsepwrguy]

Minimum treatment duration for victrelis patients is 28 wks total, 4 wk lead in with interferon/riba + 24 wks with interferon/riba/victrelis