I follow your logic and understand why you don't want the INC. I went through a similar thought process before I chose. I had treated before and was familiar with anemia and thought I would use Victrelis because I at least knew what I was getting into. In my mind, however, I downplayed the significance of the anemia.
This is how the Victrelis has impacted me. I am now on week 43 and my hemoglobin has been in the 9s (my pretreatment HGB was 14) for more than half of the time. I consider myself lucky compared to those who have suffered with hemoglobin significantly lower and cannot imagine it. But the 9s have impacted my daily life. This is a tired different than just wanting to go to sleep. In fact, my eyes can be wide open but every muscle in my body is so exhausted, it is like I cannot move (it is the lack of oxygen). I et up at 5 to take VIC and sometimes go back to bed until 6:30. I take a nap as soon as I get home from work. Weekends are spent taking pills and taking multiple naps - and it does not matter if I just took a 3-hour nap, I can still fall asleep during an 8:00 tv show. If I do something - like go to the grocery store which can take 2 hours, I am shot for the day and have to nap.
The other side effect that has really gotten to me with VIC is swelling of my ankles and feet and a subsequent rash. Now this is not the Incevick rash and not a ribavirin rash which I had first tx. This has been ongoing with no significant improvement since at least November. It may be the VIC or may be the anemia but it seems to be tied into the vascular system. I itch along vein lines and scrratch them raw. Then I force myself to not scratch them because they are so bad, and they start to heal up. But then when everything is crusty, the scratching starts again and the skin is so thin that I end up starting the cycle all over. My weekends on the couch do help the swelling but once Monday starts again it is back.
The third thing that is becoming increasingly hard with VIC is choking down those 12 pills a day - and they are not small. And do not let one of the jell caps get damaged, because you have never tasted anything so vile in your life.
One of the major reasons I went with VIC was that I had a couple of forum friends who were hard cases who had relapsed previously and have now achieved SVR with VIC. I am impressed by both of the PI's track records. I think I would still choose VIC over INC but the thought of not having to take the PI so long is inviting.
It is a hard choice but it should be yours, not your doctors.
frijole - PERFECT. This is what I needed to hear. What a fantastic, chock full of info, post. And you aren't gonna get that kind of information from any doctor. I know someone on Vic who is just now, maybe half way thru, not sure, having joint pains and the itching frenzy. Doesn't INC have that rash thing too?
Still on the fence about it. My only issue with Incivek is the gargantuan amount of fat for a person who has shunned it for years. Example, I HATE avocados. I look on the lists of fatty stuff to eat, and I don't like most of them. HOWEVER, that 12 weeks certainly makes it a lot more palatable (pun intended). If I achieve SVR in a shorter period of time with Incivek, then I can deal.
Oh wait - that OTHER issue - Anal Dragon Fire. Now that one is gonna be real tough. "Shards of glass" - omg.
Doc. wants to go with Incivek, and I think it's because of the anemia issue. Heck I don't know, but I will pick his brain until he needs a wig when I see him a week from today. Questions are written out, more will be added, and hub will be there to write stuff down since I have had considerable brain fog since I was 60. In our SHORT two conversations gastrp was clear that it's the way to go.
But I want to get the Gish Team's insight into this.
I think I could get a double cheeseburger down once a day - and then never want to eat one again. Could get a bunch when in town and freeze them. Guess dairy is kinda not so good, even though ice cream would be okay. There ARE some things I would eat, but I suspect it's hard to eat ANYTHING while on tx anyway.
THANK YOU - AND whoooo hoooo - you are almost done. SVR?
Hey, glad you found a way to get a referral letter. It makes sense your PCP would be able to write the referral.
There are lots of threads related to Incivek -vs- Victrelis but very few that come out and state why one med is preferable to the other. As you know there are a lot of variables.
I gathered you are treatment naive, Geno 1, stage 2/3. I remember you have steatosis but I am not sure if that matters when it comes to one med over the other. Also I was unsure if you are cirrhotic so I put figures for it just in case
I actually do not know if one med/treatment protocol would be more beneficial for you based on your individual circumstances so keep in mind someone with more knowledge and experience than I have could come along and render all this meaningless. First the obvious, Victrelis is less expensive than Incivek
Also one of the below links points out that the SVR rates with Incivek and Victrelis therapy cannot be directly compared because there have been no head-to-head trials of these agents.
♦♦I do not blame you for not wanting to take the Incivek. The fat requirement is disgusting but doable. It helps to remember that not everyone gets the anal dragon fire. I was looking at a chart that has the side effects for Incivek and the rash seems more likely since Incivek over the controls is (56% vs 34%)
On the other hand when you see how they broke down the side effects for *everything* that possibly could happen in the bum area:
hemorrhoids (12% vs 3%),
anorectal discomfort (11% vs 3%),
anal pruritus (6% vs 1%)
diarrhea (26% vs 17%)
Anemia is a factor for both meds but there is always Procrit....
With Victrelis I like the idea of starting out with the Peg/Riba and then adding a medicine along the way rather than starting out with all three meds (with Incivek). I treated before and I can tell you It was incredibly overwhelming.
Just going by the studies with Victrelis
Treatment-naïve patients: the addition of VICTRELIS to P/R resulted in a significant increase (1.7 fold) in SVR rates to 63 percent
Here is the one for treatment naive with cirrhosis:
In treatment-naïve patients with compensated cirrhosis at baseline, 42% (10/24) achieved SVR with the addition of 44 weeks of VICTRELIS to PR
Then the one for Incivek (Advance Study)
For Incivek, the percentage of treatment-naïve people who achieved an SVR was 79%; People with cirrhosis achieved a 62% SVR
The treatment duration time for each med can be complicated. This link:
Best case incivek - 24 weeks otherwise 48
Best case victrelis - 28 weeks, otherwise 36 or 48
And a really cool table by hrsepwrguy
Link for Victrelis:
Incivek vs Victrelis (Physician perspective)
I think the doctor (& others) ought to be able to explain why one medication/treatment protocol would be hands down a better choice for you. Further, you should have the opportunity to explain the reason why you prefer one med over the other.
Believe me, a few months ago I would not have said this. I started to see Victrelis in a new light because I have seen so many treatment naive people (both in real life and on line) stop treating with Incivek before the indicated treatment duration. This is compared to the Vic which so far has maybe been one or two people. As a result I would factor being able to handle treatment (the side effect profile) even if there is slight edge with SVR with one med compared to the other. I mean, you know your body :)
In my case Incivek was the better choice however to be honest, I did not learn very much about Victrelis beforehand.
You probably already saw this pos, but just in case:
I think it ism good to go in with an educated and open mind. It is a big decision.
I know my docs went with the Incivek because the anemia is a bigger problem with Vic., and also because one takes Inc. for only 12 weeks no matter if you do 24 or 48 total weeks. With Vic, you do at least 24 weeks of Vic and then additional weeks of Vic if you do not clear at 8 weeks.
There are rashes with both but Inc. seems to have a higher percentage of rashes. If one gets the rash, it can normally be controlled if treated with prescriptions. Nausea is a problem with both of them. The anal issues sound terrible, but I had all of the anal issues and, once I figured out that to avoid them, I had to keep the stools firm, I had no further problems. Plus, they cleared up right after Inc. finished.
The cost is less for treatment with Vic (if one treats for 24 weeks). But the cost is about the same as treating with Inc. if one treats for 48 weeks.
I think it boils down to which side effects you would rather not have, which side effects are relatively easy to handle, which drug is most effective in your situation, and which drug the doctor is most familiar with and most comfortable with in terms of your situation.
I had the rash (but from Inf and Riba, not Inc), the nausea, the anal problems. The anal problems were easy to treat and control once I figured them out. The nausea was bad, but that is because the treating team would not treat it until I was vomiting and insisted on Zofran (2 months down the line). Then I felt 1000% better. The rash is annoying and irritating. But that too can be treated with prescription meds (for me, clobetesol soln., fluocinonide ointment, and Hydroxyzine 50 mg every 6 hours). Again, my team ignored it until I insisted on prescription relief. Then it took them over 2 months to get the meds right. Once I was on the correct meds, the rash was under control and manageable and I felt 1000% better.
In my opinion, it is the untreated side effects that make the treatment so miserable. If docs and treating teams were more proactive in treating the treatable side effects (instead of ignoring them) treatment would be much, much easier for all of us.
I would choose Incivek again if I was treating but maybe that is just because I feel comfortable with it, and I was concerned about the increased rate of anemia with Vic.
It is a hard choice but hopefully you can come up with a decision that you are satisfied with.
Yes, I am Gen 1a.
I don't feel like my gastro has much of an open mind. Educated about this - well, not sure about that.
Being as advanced in stage (3+) as I am, and with bridging fibrosis (and "cirrhosis") in parenthesis, I have got to get this going.
So, since I am having so much trouble getting my pdoc to write a SIMPLE referral letter, I may just roll the dice in favor of going with the local gastro - which means INC. And it means NOW. Pooh has already given me great diet advice. Anemia with VIC would be pretty bad for me (as with everyone). If ONLY I hadn't crossed over into the pre-cirrhotic stage my chances would be so much better, but... it is what it is.
My husband has a very keen 'feel" about people. He will be there. I'll be doing most of the talking but he will be doing most of the watching (the doc). I trust John's intuition (he is ALWAYS right) 100%.
I did see that post about ???'s to ask, and I've written them down as well as adding others. He's going to be quite surprised when I ask them. But really, do they think we don't get on these forums and hear from real people about all of this?
ohhhhhhhh - now I am reading again the stats provided by Idyllic. SOOOOOO ~ I'll take INC with the 62% rather than the VIC with 42%. Am I reading this right for someone treatment naive with cirrhosis?
If so, that's all I need... INC it will be - and treating with local gastro. I am concerned about his availability, which so far as been horrible, but we can discuss that. As in, who do I talk to when you're not here (which is at least 60% of the time in an 8 hour day ~ he's doing colonoscopies in he mornings and hospital rounds with patients in the afternoons) - it is VERY hard to get an appt. with him. I need a back-up DOCTOR, not a medical asst. who can't write scripts. And I am NOT going to EVER wait for 3 to 5 weeks for results of any tests, which it has been... so I've had to get them myself before the appt. That last one of the biopsy pathology was an excrutiating ordeal with his two -person front staff.
There is something else you will want to take into consideration (and ask questions about). I had forgotten what your biopsy report said. If I remember correctly it was Stage 3+ (cirrhosis).
In that case you may very well be doing 48 weeks total of treatment. It is recommended that cirrhotics do 48 weeks regardless of clearance at 4 weeks or not.
"The prescribing information notes that treatment-naive patients with cirrhosis may benefit from receiving the longer duration of 36 weeks of pegIFN/RBV (ie, 48 weeks of total treatment), even if they achieve eRVR. For cirrhotic patients, it will be important to weigh this recommendation with tolerability on therapy and any significant adverse effects."
"For patients with compensated cirrhosis, the prescribing information for boceprevir recommends a fixed-duration treatment regimen of 4 weeks of lead-in followed by 44 weeks of boceprevir plus pegIFN/RBV. "
I am on my 3rd go round with treatment! The 1st time it was just Peg/Int in (93-94). No side effects. 2nd time was on Peg/Rib combo, (07), 48 weeks.. Very little side effects, cleared at 8 weeks, relapsed 6 weeks after treatment. Rash mostly and some abdominal pain, and moderate anemia. This treatment peg/rib/incivek has been very difficult. I chose the Incivek because of my Anemia problem last tx and the duration and amount of Vic taken. Yes the 20g x 3 of fat suck and get to you, and yes the Anal problem can be horrible, but it was 12 weeks and done. Anal went away immediately, (which is very common).
I am now 1 week off Incivek, My body is clearing the Incivek and today is actually the 1st day I have felt almost human. As far as the Incivek vs Victrelis, that has to be your decision. I have a phenomenal GI and they have been very clear and forth coming with ALL the side effects.
One thing that Never gets mentioned on here for the Rectal problems is Rectal Rockets. They saved my a-s literally! it is not a joke. www.rectalrockets.com. They are made by Compound Pharmacy's and were prescribed by my Dr's PA. who is Brilliant!
Everyone's side effects and reaction to Meds and treatment are different, as obvious in this Forum.
What ever decision you make, make it for yourself and "Stay the Course". That is the most important thing. Make sure you have, if possible, a good support system. Friends, family, and all of us!
I hope this helped!
I do not want to mislead you. I am not sure which applies to you since you are stage 2/3. ***This is where someone who understands the level of Fibrosis you have needs to chime in.***
Here is how it is presented on page 6 of the Boceprevir Monograph.
It is Table 3, Efficacy in Treatment Naive Subjects Sprint 2
It says 42% on the chart in the Boceprevir Monograph for 48 weeks Peg/Riba combo Metavir fibrosis score (Cirrhosis Score F4).
For Metavir Fibrosis Score F3, F4 it is 52%.
This was a huge PDF file so I just did the 'quick view.' in Google documents. you should be able to scroll down to page 6 (hopefully):
Actually this link tiredofhep posted to see the rectal rockets works better, maybe it is just my antivirus software but it won't let me open up the rectalrockets.com link
yeah, pooh, I already figuring I'm one of those 48 week heppers. Fine with me. Whatever it takes to give me more of a chance at clearing these little monsters. But it would still be 12 weeks in INC, right?
My husband is thinking we should sell one of the cars if I'm down and out for a year. He's serious. And maybe he's right. If I need anything, even out here in the boondocks of the desert, he'll go get it or our ONE neighbor will. He's a good old retired guy. Wife there too. (sometimes it's nice to have just ONE neighbor... it's certainly peaceful)
What do you think about that? Just your thoughts - will I indeed be pretty much housebound, which honestly I don't mind at all. I pretty much am anyway and like it - cats and dogs, HBO, strong husband, who now is behind me 100%, unlike he was before the bx results.
Oh, tiredofhepc, indeed we did get into a discussion of rectal rockets, complete with photos. GOOD GOD! :):( HOWEVER, as awful as they seem, it I need them I'll take them. Heck, I will already be taking forms of poison.
ha ~ if I need it, I WILL find it.
Just google Rectal Rockets probably.
Yes, only 12 weeks of Inc. total regardless of it you do 24 weeks or 48 weeks.
I really don't know how you will react and which side effects you will have. But, I still maintain that if the side effects are handled properly and treated early before they snowball out of control treatment would be a whole lot easier. As I mentioned, my treatment would have been 5000% more tolerable and less miserable if my team had treated the side effects. I mean, had I been on Zofran from week 2 on, instead of not getting it until week 9 - 10, I would not have been anywhere nears as ill and homebound as I was for 2 months. I felt like a new person on Zofran. The same is true of the rash (which started about weeks 10-11). Had those idiots treated the rash appropriately, correct meds and correct dosages, I would not have been miserable and homebound for another 12 weeks. After I got on the correct dose of prescription Hydroxyzine and some topical prescriptions, I felt 5000% better. Both the nausea and the rash (allergic reaction) are systemic so they affect a whole lot more than "just nausea" or "just rash and itching." I would not have been as ill or homebound had I received the correct side effect drugs in a timely manner.
The fatigue and malaise and lack of motivation can impact how much one does, but it is tolerable and one can still do things and go places if one wants to. Usually it is just a matter of slowing down a bit, not expecting to be able to do things at the pace one did before Tx, and resting as needed. You may do just fine. There are people who have almost no side effects or very minimal side effects.
I actually feel pretty good now and am almost off the Zofran. I have 10 more weeks to go (of 48). I tire easily, but every day I get a little stronger and have a little more stamina. (That is also a problem with not treating side effects and letting people get very ill. They are too sick to do anything and one loses muscle mass and strength by resting all of the time, lying down, siting down, etc.)
With any luck, you will have a successful treatment with few sides.
I am not sure where Idyllic's SVR info on VIC for cirrhotics came from, but the fact is there were not enought cirrhotics in the trial to give viable statistics. I would have to look when I got home -- but I am thinking maybe 33 people? If can-do-man came around he could addreess that. He had been dx cirrhotic for at least 5 years prior to triple and he is SVR.
If you go to my home page and look at the photos, I have kept a chart for most of us starting in 2011. I have not been able to keep up with it for those starting in the summer of 2012, unfortunately. However, everyone's biopsy report is stated if known and you can see the progress each has made on INC or VIC (if they have stayed with the forum and posted results, and many have not). We are just now seeing the 6 month post VL tests for those that treated for 24 or 28 weeks now.
and pooh, you have helped me so so much. I will for sure be prepared for those sides and get stuff the minute they start. The Zofran was for..???? Somewhere I read on here, "Ondansetron, a marvelous fast and very effective anti-nausea med" ????
And maybe I will just pretend to be sick all the time and let hub do all the work around here and grocery shopping etc. He will HAVE to take the animals to the vet because they can be a "pawfull".
It is just a Boceprevir National Drug Monograph. It is on the VA web site.
Sorry if the other link didn't work.
Try this one.
It is Table 3: Efficacy in Treatment Naive Subjects (SPRINT 2)
Or you can go to this site
And click on
Zofran and Ondansetron are the same thing. Zofran is brand name and the other is generic. Zifran was for the nausea. It blocks the chemical that makes a person nauseated. I took it every 8 hours for several months.
Well, I do think you will be tired, it is the degree of fatigue that is difficult to predict. The other thing is, a lot of the side effects come and go. For instance, for a week or two in Dec. my legs felt like I was walking through 2 feet of mud or snow with lead feet. That left and never came back. The muscle fatigue in my thighs comes and goes, or at least lessens some days. The aches come and go. Most of the sides come and go or vacillate in intensity. The dry cough left when I finished Incivek. So did all of the rectal problems, even the hemorrhoids. You would never know I ever had any. The concentration is still off and I cannot read a book, but I can watch DVDs and listen to audio books. Most of these side effects are really quite tolerable. It is the ones I mentioned (rash and nausea, and anemia if you get it) that really do a number on you.
You will do just fine.
Also you could try this site which collates Boceprevir study results in a meta analysis:
OK. I posted a jpg of the chart. That way you can see the breakdown of the groups and if I made an error transferring the data. I had to put it in my journal
**Last post Cat. Sorry for all these posts**
You are doing way more research than I did and I commend you for it :)
Thanks - some of this research makes all this a bit hard to take, BUT I will be READY.
I have BIG NEWS next.
My pdoc's office called me an hour ago to tell me they just faxed TWENTY FIVE pages to Dr. Gish's office in Las Vegas - WITH Dr. XXX's referral letter on top. By the time I see my gastro next week I'll already have an appointment with Gish. That's what he gets for going on vacation.
How cool is that?
That is great news. I bet you are heaving a sigh of relief and dancing in the streets. I am very happy for you.
You bet I am, pooh. I NEEDED to get that information. I was starting to think I was going to be stuck with my gastro. As long as Gish's team "accepts" me, I'm good with it. They will be able to tell me what I should do as far as tx, and I will go along with it. And they have a 24/7 hotline - call and speak to a real doctor - imagine that!
I'm very happy. I know I've got a lot to deal with, but I know if anyone can get me to SVR it's that bunch.