Did you get to pick your drugs and would you pick the same again or different? Why?
davesf said
Jul 7, 2012
Kannon,
That makes sense. My bias/filter is that I was only considering the naive data which I believe had a much closer spread between the two. I seem to have learned a lot more as I went through treatment.
I started this post just to see if there was any grass is greener response. Kind of: "Don't know if it'd be any better but my side effects were bad enough that I wish I had tried the other." Or "Now that I've learned...I would..."
Interestingly many people answered as a forward looking choice instead of a past one.
All the Best, Dave
kannon said
Jul 7, 2012
There are ways to tweak the statistical data to make the results more statistically attractive.
I chose Incivek due to their superior stats for prior relapsers. Im considered a prior relapser. According to the trials, prior relapsers using Incivek triple therapy achieved an 86% SVR, which is like 15% higher than Victrelis.
I know a little about stats, not enough. I know the margin of error decreases at the sample size increases. A larger variance means the results were spread out over a wide margin. If you take a bell shape curve, or central limits theorem, the wider and shorter the curve the greater the variance from the mean. With 86% SVR I think the curve would be tall and narrow with little variance for this group. I could be wrong.
davesf said
Jul 7, 2012
From what I understand Phase 3 trials are often big enough to prove something "works" compared to the control group withing a statistically valid variance (margin of error). But the variance is the plus or minus as to how well it works (margin of error for accuracy). The two studies were close enough in their success rate that when you add the margin of error you can't say that either one is proven to work better.
I think I'm explaining that properly. Any math/finance/stats people are welcome to explain it better if necessary.
kannon said
Jul 7, 2012
davesf wrote:
My insurance offered both Victrelis and Incivek. I made my choice before I discovered the forum and was on my way to becoming dangerously semi-knowledgable. I chose Incicvek simply because the trials showed a slightly higher success rate. I learned later that that numerical advantage was statistically irrelevant given the trial sample size.
Did Incivek use a small sample size for their trials?
news said
Jun 29, 2012
I have used Pegasys all along, coupled with Ribasphere Ribapack in 1200mg and 800mg days. For a while I was adding a 200mg tablet each day till they ran out. Both of these drugs have been kind to me. I am losing my hair, but it is uniformly falling out, not in patches. I have had a very mild occasional rash and itch. I am fatigued and short of breath if I overexert. I have flu symptoms since November 2011. But all of this can be tolerated as long as I don't get too worn out. My protease inhibitor was Incivek, the scourge of Seven Seas, a ruthless and cruel virus killer of the highest caliber. It beat me down pretty bad, but not all the way down. And it seems to have worked for me. So I would do it again. Thing is, I believe once you use Incivek once you can never do it again. So if I end up sick again, I'll have to find something else.
Alan
Sunrise747 said
Jun 29, 2012
My doc suggested Victrelis but I pressed for Incivek and got that instead. I too poured over the trials data and decided, as a relapser, Incivek looked slightly better. But which is easier? I think it is impossible to say since none of us have taken both and comparing the experience of one person on Incivek against the exerience of a different person on Victrelis isn't all that helpful. We all react so differently to the side effects. In a perfect world we would have access to a well organized and searchable database of thousands of patients' experiences on these drugs. That would give us a good indication. Frankly I'm not sure why such a database does not exist! I know most of us would gladly share our data in return for the collective insight and the greater good of the Hep-c community.
Shep said
Jun 29, 2012
Good question Dave-- I did not get a choice between Inciveik and Victrelis--my insurance co selected for me. So ended up on Victrelis, with Pegasys and Ribasphere and my personal fav--ProCrit (not really). I have done ok--the last 5-6 weeks have been a challenge--mostly from exhaustion, body aches, intermittant swelling & joint pain, HEADACHES and either a rather nasty mood or crying spells. One thing I would have done different is get on an AD--just really thought I could handle the emotional sx without--but am a little on the shaky side these days. I have appeared to tolerate the Pegasys ok--the ProCrit is the killer for me.
krowdog said
Jun 29, 2012
I chose incivek just for the shorter TX duration (If I was lucky enough to get a complete early viral response) Well, I did get lucky, and so naturally would do it again. This whole TX seems to be a bit of a "craps shoot". What SX's will I get?, how badly?, will I be able to work?, will I eVR?, SVR?, how quickly?, etc.
From those I've seen on this forum, Victrellis does seem a bit easier to handle, but I did the Incivek without too much problem. Actually, the riba seemed worse to me, with a nasty itch lasting right to the end of TX. (And even about 2 weeks past).
Like you, my pegasys "ride" was pretty easy, except for the first shot, which laid me out for a day and a half.
Brad
Phil G said
Jun 29, 2012
I did Pegintron, mostly generic riba, and Victrelis. The sx were fairly mild - little or no nausea, diarrhea, rashes, itching, or depression. Joint pain actually improved. Chills were persistent, and insomnia was intermittent. Fatigue was the big one other than mild flu on Sat after shot on Fri, and about 3 weekends spent entirely on the couch. Undetected from week 8. When my riba was reduced, everything improved significantly, so in my experience, riba is the main culprit.
I would do the same again, but reserve the right to change my mind in 22 weeks. But I suspect that if the opportunity arises again, you probably don't do the same ones that didn't work before.
Margo said
Jun 29, 2012
Dave, I'll tell you about interferon. A few years ago I did Pegintron and I thought I did pretty well, only now I realize that i didn't know what I was talking about. Besides the first injection that made me crippled in pain lying on the floor, crying, with a high fever, I went through Saturdays of muscle and bone aches throughout 11 months. Tylenol and Motrin was handy all the time. This treatment I am doing Pegasys and it's a walk at the park. I don't even take Tylenol on the day if my shot! Pretty amazing, however my doctor still sees no difference between the two, well I do and a big one. Even the first pegasys shot was nothing, no pain or fever whatsoever! So if you guys who are about to start your treatment, choose pegasys, don't listen to your doctor, there is a HUGE difference in the way it will make you feel!
davesf said
Jun 29, 2012
My insurance offered both Victrelis and Incivek. I made my choice before I discovered the forum and was on my way to becoming dangerously semi-knowledgable. I chose Incicvek simply because the trials showed a slightly higher success rate. I learned later that that numerical advantage was statistically irrelevant given the trial sample size.
Would I choose the same again? I'm not sure. They each have their own drawbacks. My impression from the forum is that the Victrelis is a moderate rough ride all the way through. The Incivek is a harder ride on the front end but then rewarded with a lighter than average ride on the second half (or 3/4).
My second half has been very tolerable. During Incivek the brain fog was 3x worse and the general crappy feeling was twice as bad. And of course the famous back end issues have gone away.
But I'm also very curious about Pegasys (Peginterferon Alpha 2A) vs. Pegintron (Peginterferon Alpha 2B). I didn't realize there was a choice of two variations (vs. competing brands of same drug) until I started. Did you end up on Pegasys if you take Copegus (both Roche) and on Pegintron if you take Rebetol (both Schering-Plough)?
I'm on generic Riba (Ribasphere) and ended up on Pegasys. My general feeling from posts is that people on Pegintron seem to have a tougher time. I've seen a few comments from 2nd timers who have tried both and did better on Pegasys. But my impression pool of comments is small. Please chime in on your experience. I've had a fairly "easy" ride on the Pegasys. Yes, I feel crappy, but I don't dread and delay the shot as some do. I could take my shot Sunday just before the work week started (if I had to). Granted I'm lucky enough to be attacking the dragon while I'm in my 40's, in good shape, and the virus hadn't hurt me bad yet. Or is being on Pegasys luckier than being on Pegintron? Or am I just lucky and should count my blessings and shut up? I do realize that people with less side effects are less likely to speak about it as to not make others who are suffering feel worse. But please do comment here for our collective wisdom.
Kannon,
That makes sense. My bias/filter is that I was only considering the naive data which I believe had a much closer spread between the two. I seem to have learned a lot more as I went through treatment.
I started this post just to see if there was any grass is greener response. Kind of: "Don't know if it'd be any better but my side effects were bad enough that I wish I had tried the other." Or "Now that I've learned...I would..."
Interestingly many people answered as a forward looking choice instead of a past one.
All the Best, Dave
There are ways to tweak the statistical data to make the results more statistically attractive.
I chose Incivek due to their superior stats for prior relapsers. Im considered a prior relapser. According to the trials, prior relapsers using Incivek triple therapy achieved an 86% SVR, which is like 15% higher than Victrelis.
I know a little about stats, not enough. I know the margin of error decreases at the sample size increases. A larger variance means the results were spread out over a wide margin. If you take a bell shape curve, or central limits theorem, the wider and shorter the curve the greater the variance from the mean. With 86% SVR I think the curve would be tall and narrow with little variance for this group. I could be wrong.
From what I understand Phase 3 trials are often big enough to prove something "works" compared to the control group withing a statistically valid variance (margin of error). But the variance is the plus or minus as to how well it works (margin of error for accuracy). The two studies were close enough in their success rate that when you add the margin of error you can't say that either one is proven to work better.
I think I'm explaining that properly. Any math/finance/stats people are welcome to explain it better if necessary.
Did Incivek use a small sample size for their trials?
I have used Pegasys all along, coupled with Ribasphere Ribapack in 1200mg and 800mg days. For a while I was adding a 200mg tablet each day till they ran out. Both of these drugs have been kind to me. I am losing my hair, but it is uniformly falling out, not in patches. I have had a very mild occasional rash and itch. I am fatigued and short of breath if I overexert. I have flu symptoms since November 2011. But all of this can be tolerated as long as I don't get too worn out. My protease inhibitor was Incivek, the scourge of Seven Seas, a ruthless and cruel virus killer of the highest caliber. It beat me down pretty bad, but not all the way down. And it seems to have worked for me. So I would do it again. Thing is, I believe once you use Incivek once you can never do it again. So if I end up sick again, I'll have to find something else.
Alan
My doc suggested Victrelis but I pressed for Incivek and got that instead. I too poured over the trials data and decided, as a relapser, Incivek looked slightly better. But which is easier? I think it is impossible to say since none of us have taken both and comparing the experience of one person on Incivek against the exerience of a different person on Victrelis isn't all that helpful. We all react so differently to the side effects. In a perfect world we would have access to a well organized and searchable database of thousands of patients' experiences on these drugs. That would give us a good indication. Frankly I'm not sure why such a database does not exist! I know most of us would gladly share our data in return for the collective insight and the greater good of the Hep-c community.
I did not get a choice between Inciveik and Victrelis--my insurance co selected for me. So ended up on Victrelis, with Pegasys and Ribasphere and my personal fav--ProCrit (not really). I have done ok--the last 5-6 weeks have been a challenge--mostly from exhaustion, body aches, intermittant swelling & joint pain, HEADACHES and either a rather nasty mood or crying spells. One thing I would have done different is get on an AD--just really thought I could handle the emotional sx without--but am a little on the shaky side these days.
I have appeared to tolerate the Pegasys ok--the ProCrit is the killer for me.
I chose incivek just for the shorter TX duration (If I was lucky enough to get a complete early viral response) Well, I did get lucky, and so naturally would do it again. This whole TX seems to be a bit of a "craps shoot". What SX's will I get?, how badly?, will I be able to work?, will I eVR?, SVR?, how quickly?, etc.
From those I've seen on this forum, Victrellis does seem a bit easier to handle, but I did the Incivek without too much problem. Actually, the riba seemed worse to me, with a nasty itch lasting right to the end of TX. (And even about 2 weeks past).
Like you, my pegasys "ride" was pretty easy, except for the first shot, which laid me out for a day and a half.
Brad
I did Pegintron, mostly generic riba, and Victrelis. The sx were fairly mild - little or no nausea, diarrhea, rashes, itching, or depression. Joint pain actually improved. Chills were persistent, and insomnia was intermittent. Fatigue was the big one other than mild flu on Sat after shot on Fri, and about 3 weekends spent entirely on the couch. Undetected from week 8. When my riba was reduced, everything improved significantly, so in my experience, riba is the main culprit.
I would do the same again, but reserve the right to change my mind in 22 weeks. But I suspect that if the opportunity arises again, you probably don't do the same ones that didn't work before.
My insurance offered both Victrelis and Incivek. I made my choice before I discovered the forum and was on my way to becoming dangerously semi-knowledgable. I chose Incicvek simply because the trials showed a slightly higher success rate. I learned later that that numerical advantage was statistically irrelevant given the trial sample size.
Would I choose the same again? I'm not sure. They each have their own drawbacks. My impression from the forum is that the Victrelis is a moderate rough ride all the way through. The Incivek is a harder ride on the front end but then rewarded with a lighter than average ride on the second half (or 3/4).
My second half has been very tolerable. During Incivek the brain fog was 3x worse and the general crappy feeling was twice as bad. And of course the famous back end issues have gone away.
But I'm also very curious about Pegasys (Peginterferon Alpha 2A) vs. Pegintron (Peginterferon Alpha 2B). I didn't realize there was a choice of two variations (vs. competing brands of same drug) until I started. Did you end up on Pegasys if you take Copegus (both Roche) and on Pegintron if you take Rebetol (both Schering-Plough)?
I'm on generic Riba (Ribasphere) and ended up on Pegasys. My general feeling from posts is that people on Pegintron seem to have a tougher time. I've seen a few comments from 2nd timers who have tried both and did better on Pegasys. But my impression pool of comments is small. Please chime in on your experience. I've had a fairly "easy" ride on the Pegasys. Yes, I feel crappy, but I don't dread and delay the shot as some do. I could take my shot Sunday just before the work week started (if I had to). Granted I'm lucky enough to be attacking the dragon while I'm in my 40's, in good shape, and the virus hadn't hurt me bad yet. Or is being on Pegasys luckier than being on Pegintron? Or am I just lucky and should count my blessings and shut up? I do realize that people with less side effects are less likely to speak about it as to not make others who are suffering feel worse. But please do comment here for our collective wisdom.
All the Best, Dave