Aa
Really need Info
Let me recap real quick, my study dose not alowe rescuse meds untill we stop vx at the end of week 12, Sunday is the end for me. Monday I go to study nurse for blood and more meds, I know I am not in group D which stops all meds at week 12, so I either have 12 more weeks of meds or 24 more weeks. My riba started at 1200mg cut in half at week 3 for low hbg, so I think I should start procrit so I can go back up on my riba for my remaining time. Who knows I may be on placebo!! and vx has no track record let! I need to do what is best for me and my health. Now my problem my DR will not give me procrit, told me I do not need it my hbg is 9.5, but I feel o.k. I showed Jim a paper (study) my DR wrote that said after you become und lowering riba will not hurt chances for svr, I hope you remember that paper Jim. Shoud I demaned procrit?? or should I just keep going like I am?? I KNOW vertex and all of our study nurse's read this site , My nurse, PDS nurse and MRE, Dr all got a letter about this site and the vx lab rats that post, I have been a good patinet, But should I put my foot down now?? I tried to get a pcr at week 4, was told no, so I had one done at week 11, I know that will not tell me placebo or soc BUT I did not want to go to week 20 and not know,sorry jen, I will find out my pcr today. What would you do. Thanks Pam
Aww heck, I think the laughter keeps us from not takin ourselves too seriously. Here in hep world too, like your brain fog thread above, laughter kinda seperates us from the events and labels, reminds us we be humans too... or at least close to it.
don
don
U-sed: " Course in my case I'd have to add handcuffs..they say it's the accesories that make the outfit. "
Been there, done that, and then some. I didn't quit dope till they sent me to the pen-uhh-tenchury. That was a defining moment in my life. Never did dope again, never went back. Got one DUI 15 years later. But yeah, addiction is a rough life, for sure. I guess I shouldn't joke about it as being 'fun'.
Been there, done that, and then some. I didn't quit dope till they sent me to the pen-uhh-tenchury. That was a defining moment in my life. Never did dope again, never went back. Got one DUI 15 years later. But yeah, addiction is a rough life, for sure. I guess I shouldn't joke about it as being 'fun'.
Hey you got the same list I got ..." do miss drankin' though. I do. So many things go well with it. Football, strippers, smokin', unprotected sex, drivin' fast...."
Course in my case I'd have to add handcuffs..they say it's the accesories that make the outfit.
On your doc that couldn't see past the 'drinkin'. I had the opposite before I got the one I got now. The old one had no clue, nice guy though...saw me on the detox list at the hospital after we parted ways, sat on my bed lookin at my chart and says words an alkie can only dream of...'hey Don, this isn't bad, your liver doesn't seem as bad as the last time you quit.'
'Thanks doc." he left. I smiled and got off the bed, made sure my johhny coat was coverin my tail and signed myself out AMA...hell I still had drinkin room on the liver..within hrs I was at the packie.
He by the way had never mentioned or checked hep c, I'd never heard of it. That was about 5 years ago. It was in the next detox or so that someone happened to test me.
Sounds like the cat shoulda just gone to a meeting too.
Be well,
Don
Course in my case I'd have to add handcuffs..they say it's the accesories that make the outfit.
On your doc that couldn't see past the 'drinkin'. I had the opposite before I got the one I got now. The old one had no clue, nice guy though...saw me on the detox list at the hospital after we parted ways, sat on my bed lookin at my chart and says words an alkie can only dream of...'hey Don, this isn't bad, your liver doesn't seem as bad as the last time you quit.'
'Thanks doc." he left. I smiled and got off the bed, made sure my johhny coat was coverin my tail and signed myself out AMA...hell I still had drinkin room on the liver..within hrs I was at the packie.
He by the way had never mentioned or checked hep c, I'd never heard of it. That was about 5 years ago. It was in the next detox or so that someone happened to test me.
Sounds like the cat shoulda just gone to a meeting too.
Be well,
Don
Yeah just think, I could be sitting in an AA meeting RIGHT NOW, slowly dying of HCV. I think the dude was an addict himself because he would sometimes slur his speech. I gave him the benefit of the doubt. When I went to get my records his clinic was shut down. There was a letter on the door of where to mail requests for records. He had some kind of 'issues'. I don't know what they were but he had 'em. So did his nurse. The whole thing just didn't have a professional 'feel' to it. Now that I look back, he did share his building with a vet. Kid you not. They were seperate offices of course, but still that should have been my first clue. I'd probably been better off going to see him. It's like Kramer said when he went to the vet for his cough, 'Vets are better than doctors, they have to cure a dog, a chicken and a pig, all in the same day.'
Oddly enough,I did have that vet neuter my cat and he damn near killed him. Accidentally cut his urethra. No joke. He was in the animal hospital for like a week. I did an internet search on the guy and this woman had built a site SPECICALLY about this vet, and that he had killed her precious kitty. Her website is called, 'Suki's Story'. True story.
Oddly enough,I did have that vet neuter my cat and he damn near killed him. Accidentally cut his urethra. No joke. He was in the animal hospital for like a week. I did an internet search on the guy and this woman had built a site SPECICALLY about this vet, and that he had killed her precious kitty. Her website is called, 'Suki's Story'. True story.
Jeez, you guys, this is a complete nights entertainment. Extreme knowlege, humor, little sexual stuff and much contreversy (sp?). This place has always given me a place to think but some days you all outdo yourselves. I went into treatment with 15 yr. old information but my doc gave me new news that I was geno 3. So I just did it. Many surprises after that!! Flu-like symptoms didn't seem to cover it. Wish I would have found this place before I started, would have been able to plan a little better. Done and still SVR but still can't believe it! Really, can't believe it. This is the place to come for info and good discussion. Remember, you scientists, there is a human factor in everything than can scew any study, even just an ego! Love this place!
LOL That doc subscribes to the "once a drunk always a drunk" thinking to the point of being a rotten doctor. That tells me that he is dumb as a post because his thinking seems to be that since your enzymes continued to rise, the sole cause had to be drinking. What a dopey head. I guess it didn't dawn on him there actually are other reasons for raised enzymes!
Good thing you got out of there, bad enough he didn't believe you but he was compromising your health too!
Talk about thinking with blinders on!
Congrats on giving up drinking.
Good thing you got out of there, bad enough he didn't believe you but he was compromising your health too!
Talk about thinking with blinders on!
Congrats on giving up drinking.
LOL That doc subscribes to the "once a drunk always a drunk" thinking to the point of being a rotten doctor. That tells me that he is dumb as a post because his thinking seems to be that since your enzymes continued to rise, the sole cause had to be drinking. What a dopey head. I guess it didn't dawn on him there actually are other reasons for raised enzymes!
Good thing you got out of there, bad enough he didn't believe you but he was compromising your health too!
Talk about thinking with blinders on!
Congrats on giving up drinking.
Good thing you got out of there, bad enough he didn't believe you but he was compromising your health too!
Talk about thinking with blinders on!
Congrats on giving up drinking.
LOL. Yeah lots of things go better with strippers :) I think you've got a good plan going. While you don't want to do things at the 11th hour, I found the time at my doc's better spent dealing with more here and now issues than something 30 weeks ahead. Can't believe your old doc BTW, sounds like a real loser.
I didn't press the issue because I figured that was a bridge that didn't need to be crossed at this time. IF I clear at 12 weeks AND I continue to have minimal sx AND my blood work holds up I may bring it up when I'm at week 40 or so. A lot can happen between now and then. The thing is, if he won't write the Rx and I do want to extend, then I'm 'on the clock' to find one who will. I'm not opposed to changing docs if there is good reason. A reason like THIS:
My first GP I had when I moved here was arrogant beyond the pale. When my ALT's were high he asked me how much I drank, which was A LOT and I told him that. He told me to quit drinking and come back in 3 months. So I quit for 90 days and got retested and the AST/ALT's were even higher. Then, he started going on about AA and 'treatment' and told me to continue abstinance for another 90 days and retest. Come back in 90 days, AST/ALT even HIGHER.
NOW he's talking about admitting me to some 'chemical dependency' program. That was the only 'reality' he would accept for the cause of my high AST/ALT's, like he didn't believe me when I told him I had not drank, and I hadn't. I refused the treatment 'plan' and he tells me 'If you can't stop drinking you will need to find another doctor.' I was just stunned at this guy. His nurse comes in and writes down a meeting place for AA and tells me 'That's where I go'. It just didn't sit well with me AT ALL. I may be a drunk but I'm not a liar, damnit !! LOL !! So I changed docs, got my records sent over, and was diagnosed with HCV within about a month. So THAT turned out to be the right move.
I do miss drankin' though. I do. So many things go well with it. Football, strippers, smokin', unprotected sex, drivin' fast ....Hell, they just lowered my car insurance I'm so boring. And stupid me, I married my first wife for the sole purpose OF getting cheap car insurance. At least, that's what I told her when she kicked me out.
God bless, and good luck !!
My first GP I had when I moved here was arrogant beyond the pale. When my ALT's were high he asked me how much I drank, which was A LOT and I told him that. He told me to quit drinking and come back in 3 months. So I quit for 90 days and got retested and the AST/ALT's were even higher. Then, he started going on about AA and 'treatment' and told me to continue abstinance for another 90 days and retest. Come back in 90 days, AST/ALT even HIGHER.
NOW he's talking about admitting me to some 'chemical dependency' program. That was the only 'reality' he would accept for the cause of my high AST/ALT's, like he didn't believe me when I told him I had not drank, and I hadn't. I refused the treatment 'plan' and he tells me 'If you can't stop drinking you will need to find another doctor.' I was just stunned at this guy. His nurse comes in and writes down a meeting place for AA and tells me 'That's where I go'. It just didn't sit well with me AT ALL. I may be a drunk but I'm not a liar, damnit !! LOL !! So I changed docs, got my records sent over, and was diagnosed with HCV within about a month. So THAT turned out to be the right move.
I do miss drankin' though. I do. So many things go well with it. Football, strippers, smokin', unprotected sex, drivin' fast ....Hell, they just lowered my car insurance I'm so boring. And stupid me, I married my first wife for the sole purpose OF getting cheap car insurance. At least, that's what I told her when she kicked me out.
God bless, and good luck !!
It is difficult getting as much of your doctor's time as you'd like, and the method that works best for me is to do as much homework as possible beforehand and have in mind the exact issues you want resolved at any particular visit.
For example, early-on in treatment I was obsessed with riba dosing and made that the focus of our meetings after going over the usual labs, etc. I brought in studies, we chatted, and ended up "negotiating" an approach that we were both comfortable with.
Later in treatment, the issue on my mind was how long to continue treating, i.e. stay with 48 weeks or extend, and if extend for how long? So again, that became the focus of our meetings-- I mentioned my studies, he gave his input, and again, we negotiated an end date we both ended up being comfortable with. I'll also add that I consulted with three other doctors on the end-date as well during the two-week period prior to week 48 but ended up going with my doctor's suggestion to extend to 54 weeks.
Lastly, I was able to commuicate with my doctor via email. I found this very useful both to resolve issues between appointments as well as to discuss issues perhaps not covered during the visits.
I found involving myself in my treatment very useful, but I also had the time to put into the process and it really does involve an awful lot of time. The only downside is to avoid getting involved to the point where you're treating yourself almost without your doctor's input. Some doctors will pretty much allow this once they have confidence in you. The problem here is that you may no longer get all the critical advice out of your doctor as you would want.
Personally, I found it a fine line to play. Directing my own tx on one hand, but on the other getting the best out of my doctor who was extremely knowledgable.
All the best,
-- Jim
For example, early-on in treatment I was obsessed with riba dosing and made that the focus of our meetings after going over the usual labs, etc. I brought in studies, we chatted, and ended up "negotiating" an approach that we were both comfortable with.
Later in treatment, the issue on my mind was how long to continue treating, i.e. stay with 48 weeks or extend, and if extend for how long? So again, that became the focus of our meetings-- I mentioned my studies, he gave his input, and again, we negotiated an end date we both ended up being comfortable with. I'll also add that I consulted with three other doctors on the end-date as well during the two-week period prior to week 48 but ended up going with my doctor's suggestion to extend to 54 weeks.
Lastly, I was able to commuicate with my doctor via email. I found this very useful both to resolve issues between appointments as well as to discuss issues perhaps not covered during the visits.
I found involving myself in my treatment very useful, but I also had the time to put into the process and it really does involve an awful lot of time. The only downside is to avoid getting involved to the point where you're treating yourself almost without your doctor's input. Some doctors will pretty much allow this once they have confidence in you. The problem here is that you may no longer get all the critical advice out of your doctor as you would want.
Personally, I found it a fine line to play. Directing my own tx on one hand, but on the other getting the best out of my doctor who was extremely knowledgable.
All the best,
-- Jim
Exactly. The thing about 'studies' is they are still a 'sub-group' and yeah, human beings tend to be pretty similar 'parts wise', but the variables in behaviour are *HUGE*.
And yeah, I don't care who your doctor is ( not YOU specifically, but patients in general ) , I just don't think many of 'em are interested in chatting with patients as 'peers'.
It's out of our control, Kalia, all we can do is what they say, sit back, take the ride and be as positive as we can.
God Bless and Good Luck !!!
And yeah, I don't care who your doctor is ( not YOU specifically, but patients in general ) , I just don't think many of 'em are interested in chatting with patients as 'peers'.
It's out of our control, Kalia, all we can do is what they say, sit back, take the ride and be as positive as we can.
God Bless and Good Luck !!!
I pretty much followed my doctor's thinking first round and our visits were short and sweet. I was UND, and things went along fine. I wasn't clear until week 10 or 11 and he didn't think anything of it, he thought I was doing great. My doctor too has sort of a laisse faire attitude to studies. Not that he doesn't keep up on them, but so many factors are involved it's mind boggling. His words "there is one to refute and one to confirm anything, studies are only one piece of the puzzle"
that was the last time I brought in my printed off studies. He's been doing this a long time and is a good guy, your doctor seems even more experienced and heck, that's what we pay them for. Studies are useful to SOME degree, but too many other variables to consider in how the studies were done first of all and so many other factors are at play to let them dictate treatment for us wouldn't be prudent as Daddy Bush used to say, its a whole lot of puzzle pieces that make up the picture.
I was a very compliant patient, but then I relapsed. You describe it so well, after round one and deferring to his expertise because it seemed to be working so well, this round I was much more aggressive in wanting him to talk to me, explain why he arrived at his conclusions and decisions and plot out his strategy for my tx and talk to me about it. He talks to me much more now because I pose questions that I have worked hard to make concise and dont take lots of his time to answer and explain and because I relapsed, he wasn't expecting that one. Relapse does change how you view the whole thing that's for sure. He has been very forthcoming and works with me, allowed me to increase Riba and extend. He wanted to go the Infergen route but I posed my reasons for wanting to stay on PegIntron and he agreed and said we can move on to Infergen down the road should that become a necessity.
I know you won't have to even think about "round two" because you WILL SVR this time, but if it happens to turn out the way my situation did, I bet your doctor will be much more talkative and willing to explore your concerns in more detail with you.
It's sort of a "if it ain't broke don't fix it" thing I think.
Your major log drops signal to him things are going fine. Sure, it's ideal to clear by week 4 but that doesnt mean people wo do not clear by week 4 won't SVR. Plenty of people dont clear by week 4 who are walking around today HCV free.
I enjoy your posts and your sense of humor, I've gotten some great laughs out of some of your comments. I'm glad you joined the board. I hope you are feeling good and tx isn't too hard on you.
that was the last time I brought in my printed off studies. He's been doing this a long time and is a good guy, your doctor seems even more experienced and heck, that's what we pay them for. Studies are useful to SOME degree, but too many other variables to consider in how the studies were done first of all and so many other factors are at play to let them dictate treatment for us wouldn't be prudent as Daddy Bush used to say, its a whole lot of puzzle pieces that make up the picture.
I was a very compliant patient, but then I relapsed. You describe it so well, after round one and deferring to his expertise because it seemed to be working so well, this round I was much more aggressive in wanting him to talk to me, explain why he arrived at his conclusions and decisions and plot out his strategy for my tx and talk to me about it. He talks to me much more now because I pose questions that I have worked hard to make concise and dont take lots of his time to answer and explain and because I relapsed, he wasn't expecting that one. Relapse does change how you view the whole thing that's for sure. He has been very forthcoming and works with me, allowed me to increase Riba and extend. He wanted to go the Infergen route but I posed my reasons for wanting to stay on PegIntron and he agreed and said we can move on to Infergen down the road should that become a necessity.
I know you won't have to even think about "round two" because you WILL SVR this time, but if it happens to turn out the way my situation did, I bet your doctor will be much more talkative and willing to explore your concerns in more detail with you.
It's sort of a "if it ain't broke don't fix it" thing I think.
Your major log drops signal to him things are going fine. Sure, it's ideal to clear by week 4 but that doesnt mean people wo do not clear by week 4 won't SVR. Plenty of people dont clear by week 4 who are walking around today HCV free.
I enjoy your posts and your sense of humor, I've gotten some great laughs out of some of your comments. I'm glad you joined the board. I hope you are feeling good and tx isn't too hard on you.
I would think it is common sense that reducing dose would reduce chances otherwise, why would they even HAVE the dose set there in the FIRST place ?
All the studies and info makes me head swim. Info overload.
I asked my doc about the Tapias study, which I think I read about in a post of yours, because I was not undetectable at 4 weeks. I had nearly a 4 log drop, but VL was still 77. He 'waived it off', so to speak, told me it was a good test result, and that I'd test again @ 12 weeks. ( I just did shot 8 on Wed ) Being that I don't really WANT to treat to 72 weeks, I didn't press it or walk out thinking about getting another doc. I'm just not at the point that I want to 'shop docs' since my sx have been tolerable, my blood work has held up, and my results have been good.
Plus, I don't think I'm really up on the info enough to be questioning or challenging my doc, who is a Clinical Professor of Medicine at the University of Texas . I had brought in some printouts but thought better of pulling them out. Just didn't feel like making an ass of myself. I don't think he's real interested in talking about clinical studies with me, if you know what I mean. He's just not a real 'chatty' kinda guy. My guess is since this is my first treatment, and it's going well, everything is gonna be 'by the book'.
I'm always surprised when people here describe visits/convo's with their doctors. Sounds like they have long conversations about studies and side effects and this or that. My doc takes a look at me, says 'good' or 'bad' on test results, gives me another appointment and sends me on my way. Of course, were I on my 2nd or 3rd ...etc attempt at treatment, I'm sure the conversations would be quite different. I really feel for people that are having difficulty treating. It must be really discouraging at times. I feel very fortunate at this time.
Enjoy reading your posts and jmjm's even though you guys appear to butt heads at times, you both seem pretty knowledgable on the subject. Perhaps we should devise a game of 'hepatitis jeopardy'. I'll take THE BERG STUDY for a thousand, Alex.'
Lot's of good info here from the 'oldtimers'. I hope never to fall into that category.
God bless and good luck !
All the studies and info makes me head swim. Info overload.
I asked my doc about the Tapias study, which I think I read about in a post of yours, because I was not undetectable at 4 weeks. I had nearly a 4 log drop, but VL was still 77. He 'waived it off', so to speak, told me it was a good test result, and that I'd test again @ 12 weeks. ( I just did shot 8 on Wed ) Being that I don't really WANT to treat to 72 weeks, I didn't press it or walk out thinking about getting another doc. I'm just not at the point that I want to 'shop docs' since my sx have been tolerable, my blood work has held up, and my results have been good.
Plus, I don't think I'm really up on the info enough to be questioning or challenging my doc, who is a Clinical Professor of Medicine at the University of Texas . I had brought in some printouts but thought better of pulling them out. Just didn't feel like making an ass of myself. I don't think he's real interested in talking about clinical studies with me, if you know what I mean. He's just not a real 'chatty' kinda guy. My guess is since this is my first treatment, and it's going well, everything is gonna be 'by the book'.
I'm always surprised when people here describe visits/convo's with their doctors. Sounds like they have long conversations about studies and side effects and this or that. My doc takes a look at me, says 'good' or 'bad' on test results, gives me another appointment and sends me on my way. Of course, were I on my 2nd or 3rd ...etc attempt at treatment, I'm sure the conversations would be quite different. I really feel for people that are having difficulty treating. It must be really discouraging at times. I feel very fortunate at this time.
Enjoy reading your posts and jmjm's even though you guys appear to butt heads at times, you both seem pretty knowledgable on the subject. Perhaps we should devise a game of 'hepatitis jeopardy'. I'll take THE BERG STUDY for a thousand, Alex.'
Lot's of good info here from the 'oldtimers'. I hope never to fall into that category.
God bless and good luck !
Kalio
Yes absolutely!
The 950 people held up their end & so should the docs
If epo is needed then they should have it -QOL is very important
The 12 weeks are up new rules apply
Rock
Yes absolutely!
The 950 people held up their end & so should the docs
If epo is needed then they should have it -QOL is very important
The 12 weeks are up new rules apply
Rock
If they told the participants that they could not have rescue meds for the first 12 weeks but after that they could use them if needed, I think it's pretty rotten that now, after the 12 weeks is up try to say something different to her.
9.5 Hgb can't be good for you, and Im sure her QOL is in the dirt.
The participants comply with the rules, the doctors should comply with their promises after the 12 week time frame.
I feel for her, it's so hard to try to fight something like this when you feel so tired and weak.
9.5 Hgb can't be good for you, and Im sure her QOL is in the dirt.
The participants comply with the rules, the doctors should comply with their promises after the 12 week time frame.
I feel for her, it's so hard to try to fight something like this when you feel so tired and weak.
This is a study for 950 so I would guess that they are checking the blood levels of the 950 , riba & peg. The old rule of SOC may not apply no one knows that is what a study is for. Theses are top doc
PS One of the first and most important Dr. Jacobson (who I went to for a second opinion but it NOT my primary hep doc (I can't afford him truthfully) questions was "did you dose reduce at all during treatment" to which I told him no in fact I took too MUCH of the meds it turned out. He said GOOD that is crucial.
I did not dose reduce until week 46 when HE reduced my Riba by 200 (i was taking extra during the entire course up until then my a stupid choice and it REALLY caused me serious problems with my hemo - but once I had started it I was worried to reduce so i just suffered through). So even when I did finally reduce, I was still OVER where I should have been taking the riba in weight based by a good deal.
I did not dose reduce until week 46 when HE reduced my Riba by 200 (i was taking extra during the entire course up until then my a stupid choice and it REALLY caused me serious problems with my hemo - but once I had started it I was worried to reduce so i just suffered through). So even when I did finally reduce, I was still OVER where I should have been taking the riba in weight based by a good deal.
It's not necessarily JUST the three but saying that I mean Jacobson, Afdahl and the few others who are "the" world reknown experts. THE hep guys.
Because the paper contradicted exactly what the big guys have to say (and face it - they are "the" guys when it comes to the LATEST Most UPTODATE information) I wouldn't take it with much credibility, especially since Jacobson is involved in SO MANY of the "studies" done as lead investigator.
I'd take their word for it as I know that when they say things they are proof positive FACTUAL and have been investigated and documented thoroughly in MAJOR studies (ie: Berg, HALT-C for example) - compared to Dr. JimmyJo Flatbush of Johnson Creek if you know what I mean.
It's just that I've never heard ANY doctor who believed that dose reducing (especially in the first 12 weeks when it's been proved we need to hit it hard and fast (double espcially the first FOUR) was anything but to be avoided at all cost and last resort.
Hope that helps explain what I meant.
Because the paper contradicted exactly what the big guys have to say (and face it - they are "the" guys when it comes to the LATEST Most UPTODATE information) I wouldn't take it with much credibility, especially since Jacobson is involved in SO MANY of the "studies" done as lead investigator.
I'd take their word for it as I know that when they say things they are proof positive FACTUAL and have been investigated and documented thoroughly in MAJOR studies (ie: Berg, HALT-C for example) - compared to Dr. JimmyJo Flatbush of Johnson Creek if you know what I mean.
It's just that I've never heard ANY doctor who believed that dose reducing (especially in the first 12 weeks when it's been proved we need to hit it hard and fast (double espcially the first FOUR) was anything but to be avoided at all cost and last resort.
Hope that helps explain what I meant.
I hope you find the resolution you are seeking and the one that is best for YOU. although we don't know how vx factors into the equation, and maybe because of that, the proven dose of riba should be continued through tx. We have a member here who became undetect early, before wk 12, continued on full doses until wk 52, at that time switch to half peg and no riba till the end of wk 88. he relapsed. Being negative early does not necessarily mean that you will not relapse, especially if the doses are lowered, even late in tx. I asked my hepatologist, Dr Bernstein, if I could just take the peg and not the riba after the 48 wks, up to the 72 wks planned and he said NO, full dose for the whole 72 wks or nothing. That should tell you something. We don't know how vx helped, you got to make sure, everything possible has been done to try and get that SVR.
good luck
good luck
After reflecting some, the fact that someone at Dr. Shiffman's level is involved has to be factored in. He's well respected and authored numerous articles on riba, SVR and epo intervention.
Maybe a good first step is simply to sit down with him and go over everything slowly. Ask him about why he thinks you're non-detectible. Ask about what study data he's basing his position on. Ask him about what harm he sees in giving your Procrit, i.e., the risks and the rewards. See what he has to say.
You might also ask him when he will have your 12-week VL load data. If it's not very soon, maybe you can be tested outside of the trial if allowed. I believe one member said it was allowed, not sure.
Part of the problem as I see it is what is done is done. Your riba was reduced early per study protocol and nothing can be done to change that. How much that will impact SVR is really unknown, especially because you don't know for sure when you were non-detecitble, you don't know if you're taking VX-950 or not, and you're not sure how relevant the data Shiffman is using to make his decisions on. Indeed, he may be correct and you will be just fine. Let's hope for that.
A second opinion can always be useful, but personally I'd think twice about leaving Shiffman unless I hooked up with someone at his level first. Assuming of course, that other than this issue, you've been satisfied how he and his staff have managed your treatment.
Hopefully, everything's going to work out just fine. Take whatever steps you feel necessary but try not to stress to much over it. For all we know, you are non-detectible, are taking VX-950 and don't need any riba.
Be well,
-- Jim
Maybe a good first step is simply to sit down with him and go over everything slowly. Ask him about why he thinks you're non-detectible. Ask about what study data he's basing his position on. Ask him about what harm he sees in giving your Procrit, i.e., the risks and the rewards. See what he has to say.
You might also ask him when he will have your 12-week VL load data. If it's not very soon, maybe you can be tested outside of the trial if allowed. I believe one member said it was allowed, not sure.
Part of the problem as I see it is what is done is done. Your riba was reduced early per study protocol and nothing can be done to change that. How much that will impact SVR is really unknown, especially because you don't know for sure when you were non-detecitble, you don't know if you're taking VX-950 or not, and you're not sure how relevant the data Shiffman is using to make his decisions on. Indeed, he may be correct and you will be just fine. Let's hope for that.
A second opinion can always be useful, but personally I'd think twice about leaving Shiffman unless I hooked up with someone at his level first. Assuming of course, that other than this issue, you've been satisfied how he and his staff have managed your treatment.
Hopefully, everything's going to work out just fine. Take whatever steps you feel necessary but try not to stress to much over it. For all we know, you are non-detectible, are taking VX-950 and don't need any riba.
Be well,
-- Jim
If she was allowed procrit after 12 in the trial, then i would go to a hemo (blood) dr and get the procrit from there. There are many docs that don't believe in recue drugs, why I have no idea as it helped me and others here on the forum.
Beagle
Beagle
Probably that's it but like you say, the question must be asked. Also, as well respected and knowledgeable Shiffman is, others equally respected docs may disagree with his theory that you don't need full-dose riba after being non-detectible. I know my NP felt similar at one point in my tx, while my doctor (at Shiffman's level) disagreed with the NP.
Add to that the fact that in Europe they're testing VX-950 without ribavirin -- cause they think it may not be needed -- add all things together and you have anything but a neat little package to make a decision on. For some reason always seems that way with Hep C treatment :)
Be well.
-- Jim
Add to that the fact that in Europe they're testing VX-950 without ribavirin -- cause they think it may not be needed -- add all things together and you have anything but a neat little package to make a decision on. For some reason always seems that way with Hep C treatment :)
Be well.
-- Jim
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