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Hep C Discussion Forum -> On Treatment -> getting ready to start tx. anybody on Victrellis?
Post Info TOPIC: getting ready to start tx. anybody on Victrellis?
Brendalee333


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RE: getting ready to start tx. anybody on Victrellis?
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I have been taking vic for about 6 weeks now.  I felt good the first 4 wks of my treatment, then after that I had a hard time for awhile, but now I am starting to feel better again. I think i am around week 14/15 now. Side effects come and go it seems. I struggle alot with dry mouth, as i have gotten thrush twice already. My appetite is back, and my energy is getting better. I noticed with the vic that I have become more irritable/moody and my hair seems to fall out alot more now.  Any questions feel free to ask. Stay positive!! I have been undetected the past 2 labs!!



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genotype 1a

Started treatment 4/12/13 with ribavirin and peg-intron. Started Victrelis 6/19/13. (triple therapy)
mallani


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Hi Tig,

Your FBC is good and your enzymes are fantastic. Don't worry about the uric acid levels as they often go up on Rx but keep an eye on them. Drink some more fluids to get the creatinine down a bit. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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I know what you mean! It affects our emotions greatly and I've noticed like so many others, the Riba rage. I don't have the patience I used to, so I find it best to bite my tongue and find someplace else to go! I've lost a great deal of weight and my doctor asked me if I was even eating. I'm not trying to but have lost about 25 lbs since I started treatment on May 23. So I'm sure the weight loss and the low blood counts are responsible for some of the fatigue. Maybe I'll have a Red Bull, large pizza and go to bed early, lol! Do you think that'll work?

WBC - 2.2 (L) RBC - 3.89 (L)  Hb - 11.8 (L) Hct - 34.9 (L)

AST- 18  ALT - 24  Platelet - 105 (L)  Ab Neutro - 1148 (L)

Ab Mono - 147 (L)  Calcium - 8.5 (L)  Uric Acid - 8.8 (H)

Creatnine - 1.37 (H)

No VL load done. I'm curious if anyone knows if the triple Rx meds affect Uric Acid levels adversely? Mine is high. I previously took Allopurinol for gout and through diet changes I got the level back down. 

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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tonib


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so whats up tig?  got your results yet?  I had shot 3 and feeling just so sorry for myself....having a dumb pity party...I go tomorrow for my wbc results, and yeah i'm tired and dizzy too.  Keep me posted 



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Tig


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I just had lab work done today and am concerned about anemia too. My numbers were low the last time and from the way I've been feeling, tired, dizzy, etc., I'm not expecting anything promising!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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tonib


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2 weeks down, 2nd shot was not as bad as the 1st, but it was still aweful, had my blood taken Friday cause doc is worried about my low platelets and wbc...and yes they are even lower now....so another blood test Friday....2 weeks for the "mother load" victrellis!  Anemia is this gonna be it?  Is there a chance I wont get anemic?  



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Tig


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The labs came back good, but unfortunately my wish for an early UND didn't happen. However the reduction was very substantial which gives me good hope for my next tests. Stick with it and good things can and do happen! Go into it with the right attitude and good support (here) and hopefully we'll all be smiling soon =)



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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tonib


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Good luck on your labs and with starting the vic...I will also be on this same therapy and I start in 10 days.



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
tonib


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So tomorrow you start...much luck to you for a continued therapy this time with beneficial results....as for me I start in 10 days, please keep us posted.

Some one told me the 1st week was sort of "cake" and the symptoms started up the 2nd and 3rd weeks, she said just get lots of rest the 1st week even though you don't feel like you need it....

Anyway best of luck



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
shorty213


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As for not telling anyone, I started by keeping it secret but i've started telling people little by little.I don't really give a damn anyways.I've had it for 15 to 20 from either shooting dope it tattoos in prison so fuc what people think.they don't like me anyways

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shorty213


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Wuts up tonib?? Thanx for reply. I actually posted this a year ago.after 2 monthsof triple TX I had to drop because of personal reasons.however in that time I went from 14 mil to und. So it works..I start again July 26 triple TX again.i'm gonna stock it out those time though.good luck and let me know how it goes

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Tig


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Tomorrow I go in to see my doc and get my 4 week lab results. As my info states, I started Peg and Riba on 5/23 and Vic on 6/20. I'm really hoping to get some good news tomorrow and find out that I'm UND (undetectable) after just four weeks of Peg/Riba. That would be too cool and I'm keeping my fingers crossed. As I progress into the treatment, the Peg/Riba side effects tend to get more and more intense. Tired all the time and have been having trouble with sore throats, dry, itchy eyes and a little nausea and vomiting (although infrequent). The Victrelis has started causing some problems with my hearing. I'm experiencing some noise similar to rushing water, very loud for a few hours after each dose but it lessens some after a few hours. I'm considering getting a set of wireless headphones so I can turn up the volume while I'm in the living room watching TV with my wife. I don't want to blast her out of the room, lol!

A week after I started the Peg/Riba I had my doc write me a prescription for Wellbutrin XL for depression. When I did the Interferon therapy back in 96, it caused terrible depression. I took Zoloft back then and it resolved those symptoms right away. I'm taking Wellbutrin because I'm taking other meds that don't mix with Zoloft, the Wellbutrin is working well, no problems to speak of except for occasional moments of strong emotion. I find myself getting weepy when I watch a sad movie or receive sad news, that's not something I typically do. So I'm sure it's treatment related. If you notice anything similar, be sure to share it with your doctor or nurse.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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tonib


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Hi there!  Looks like we will be starting tx at the same time.  I already had my little "class" and now I am waiting for my doc to return from vacation,

my appoint is for Monday 7/1 when I'm gonna get a bloodtest....he called it my baseline test.  I have decided to start on a Friday because I work and the 1st Friday is 7/5.

I heard you start with the pills in the morning and then the shot with the pills at night.  I'm gonna be on the peg,riba& vic tx.  So 29 days into the peg and riba I start the victrellis.  (I heard this is the "mother load" )  

When I go to the doc on the 1st I'm gonna get  script for some antidepressants which I want to start at least 4-5 days before my therapy.  

All this is new to me...I usually don't even take a tylenol, lol  I usually just deal with it.  So to go from that to 17 pills of tx and the shot and the other meds for the symptoms......no

I have had HCV for about 25 or 30 years, and have been in denial for most of that time...just thinking I had the antibodies....but now its getting worse I have some liver damage, I am geno type 1 and my VL is around 5 or 6 million.  

My plan is to not tell anyone....I am afraid of being treated like a leper....I heard after a while most people dont care what others think.  I remember a couple of years ago a co worker's husband died and she said he had HCV, most people freaked out and they didn't even want to be around her anymore.  Dumb asses think its contagious and you can get it in the air....people are just uninformed about this and the stigma is just something I am not ready to face.  

Sorry to ramble on here....I am 11 days to start.....time is flying...anyway  hope to hear from you



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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
shorty213


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Thanx for all the feedback! I see this tx is possible to get thru. Yeh my g I doc claims 90% of her patients drop out of tx or quit their jobs etc. not sure if I buy that now. I just know I wanna get this over and done with!

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K2


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I do shot #13 tomorrow and am on triple with vic. I feel pretty flat most of the time but it's ok. I am still working. I work alone 2 days a week and after a month of being very unmotivated and feeling guilty for not being productive I rang my CEO and told her I was struggling because of some medication I was on. A week later I told her why and bless her soul she has been soooo supportive & compassionate. Once I clear a bit of back log I'm cutting back to one day whilst business is quiet.



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genotype 1a. started pegasus and riba on 25/03/2012 added victrelis after 4 weeks, treatment naive. CHC. 4 weeks UND & continue to be so far. Finish tx 6/10/12. Fingers crossed for SVR.
kr


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I'm on week 35 of 44 weeks on Victrelis - UND since week 15 (later than many) but have stayed undetectable.   I have continued to work but taken it really easy on myself especiallyin the beginning when I needed to sleep - the first several months were the toughest.   Feel free to email or post back any questions - I have lots of experience with Victrelis now



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jrc


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Welcome, I treated w/ victrelis was very scared in the begining. I am living proof that treatment can work. I had a viral load of over 21 million and cleared the virus by week 4.I stayed und through treatment and just had my follow up test for svr and came back negative! Keep the faith and you willl make it to

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Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
chatterbox


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Hi Brian and welcome here. I'm in week 8 of treatment -4th with Victrllis- my doctor said he used to tell people to try to work if they want but that it didn't take long for people To request leave so he suggests It from the beginning so that's what I did.

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Debra

 

Geno type 1a1b

Began Peg/Rib 4/16/2012  

Began Victrelis May 14, 2012            4 week and 8 week labs undectable

12 weeks und. 16 weeks und. Week 17 Cut peg, added Neopogen 5+months und.!
Shep


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Hey Brian
The work question is a difficult one. I am very lucky--am a teacher and have worked with my core group of faculty for on average 10-15 years so we are all very close. I let those who I worked closest with know what was happening and got nothing but positive support. I go into other teachers classrooms and co-teach. Others on the forum have not had the luxury of being able to be so open with co-workers.

Actually getting to work was okay--only missed about 7-8 days out of 5 months. I must also admit that it was not my best teaching year--but I was mostly there. I do remember days when I would sit in my office and stare at the computer wondering what my password was. And I was also had a few days of not being the nicest teacher or co-worker. Little sharp of tongue and too quick to use it. Then apathy took over
Thank goodness for summer break!!

Good luck to you!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
hrsetrdr


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shorty213 wrote:

One more question I supose. How did you all handle employment aspect. I.e as far as letting them know ur on tx or evn saying what it was. I missed a couple days for appt. And theyre already asking what is my med problem. One guy even asked if its hep c bcuz somehow he heard of my biopsy. Any advise?

 In the beginning I told nobody at work; as more & more medical appointments became necessary , I finally told my supervisor, then later I just told my immediate co-workers.

After a while, I didn't care who knew- just didn't give a damn what people thought.

 

Edit:

@mallani,

Barracuda?    biggrin



-- Edited by hrsetrdr on Friday 8th of June 2012 05:29:09 AM

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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
shorty213


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One more question I supose. How did you all handle employment aspect. I.e as far as letting them know ur on tx or evn saying what it was. I missed a couple days for appt. And theyre already asking what is my med problem. One guy even asked if its hep c bcuz somehow he heard of my biopsy. Any advise?

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Geno1a vL12 million
shorty213


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Thanx for all the good advise friends. I guess I gotta do a class with the g.i doc july 26. She did say be prepared to start. So not sure if I take meds that day or wait another couple. Kaiser does takr time.

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mallani


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368.jpgBrian, I'm on the same stuff. Now at week12. Viral Load at start 1.28m, after 4weeks 3030, undetected at weeks 8 and 12. I'm cirrhotic and retired so have plenty of time to sit around and vegetate. The Viral Load doesn't mean much. Some studies show low VL may have a better chance of SVR, but in view of your age and minimal liver damage you have very good odds.

If you are undetected by week 8, your chances of a cure are great. Victrelis is no picnic, but from what others have posted it seems a bit less toxic than Incivik.

Back in 1998, and 2000 when I had double therapy and was still working, I told my partners about my treatment, but only required a few days off. Most employers seem more enlightened about HepC than they were 10 years ago. Please post any questions. Good lucksmile

 

Geno 1b, 69yo cirrhotic , started triple Tx with Victrelis March 16th .



-- Edited by mallani on Thursday 7th of June 2012 09:08:07 AM



-- Edited by mallani on Thursday 7th of June 2012 09:09:09 AM

__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Phil G


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Brian, I am also on Vic. Doing shot 27 out of 28 tonight. It's been a long road, but really hasn't been bad. Like Shep and others, the anemia and associated fatigue were my biggest hurdles. There were a few weekends spent entirely on the couch, but by Monday, it was OK. Your body will tell you when rest is more impotant than anything else. Can't over-emphasize the water and following the med instructions and schedule.

Some folks on this forum have wonderful health providers. I am not one of those. Keeping us in the dark seems to be part of their plan, but it wasn't mine, so I had some frustration and anger issues. We did adjust slowly to each others percularities, and it got better. Stay informed and in touch.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
alohaKim


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I'm on the same tx you'll be taking. I'm 18 weeks into my 36 week tx as of today. (Halfway through it!) I'm here of you have any questions.
~aloha

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Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
Shep


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Hey Brian
I have been doing the Vic tx and am getting ready to start week 24 out of 28! It has been a long and bumpy ride. BUT.. I am doing it. It starts fairly easy--drink lots of water, mild exercise and good diet. Once you add the Vic it gets more interesting. More fatigue for sure and the anemia sets in and exhaustion becomes the norm. I have managed to work throughout---only missed about 7 or 8 days of work over 5 months--I am teacher and lucky to have these last few weeks at home. I missed a week of school due to strep throat--stay away from sick people.
Stick to your med schedule and if you are feeling sad or angry --don't hesitate to ask for Anti-depressants.

Pace yourself--I bet you will do fine and stay in touch--I don't think I could have done half so well without the support of the people of this forum!
Welcome to the fight!
Shep



-- Edited by Shep on Friday 1st of June 2012 03:23:28 PM

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
hrsetrdr


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Yea, IIRC first dose of Vic was same day as shot #5; I'll be doing "dart" #7 tomorrow(Friday Jun 1st). 



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
shorty213


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dont get me wrong, Kaiser keeps me in the dark as well. After about 30 phone calls I get a little more info at a time!!lol so i take it youre able to work through it. I hear some pretty good horror stories. anyways they start you on riba/interferon a few weeks b4 victrelis?

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hrsetrdr


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Welcome to the forums Brian! i am doing triple tx with Victrellis, through Kaiser Permanente-Fontana. i sure wish that I could get as much information out of my gastro doc as you are; it seems that it is the local policy to keep the patient in-the-dark...as much as possible. I started the Victrellis a little over a week ago, been on the Pegasys & Ribavirin since April 20th. So far the only sides I'm getting with the Victrellis is some additional fatigue. I make sure that I eat a little "something" when taking the Victrellis, even though I usually have 'cast-iron guts, I don't want to push my luck.

I hadn't heard any on virus mutation casued by the Victrellis.

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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
shorty213


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hello there everyone. i just had my pre tx biopsy done. I have stage 1 scarring and grade 2-3 inflamation, i guess thats good says the dr. i do have a viral load of 12 million though. I have kaiser and their tx combo is ribaviran, inteferon and and something new called Victrellis. Is anybody else on this combo? just want to know what to expect. Also dr says that theres 20% chance victrellis can cause virus to mutate and render it untreatable? any input?



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