Aa
Thoughts on this slide dealing with SVR for type 1
Thank you all!
http://www.roberttbetz.com/slide24.gif
...I thought it would be higher
...type 1b, clear at 12 weeks, bio was 2/2, baseline vl of 178,000
Robert
http://www.roberttbetz.com/slide24.gif
...I thought it would be higher
...type 1b, clear at 12 weeks, bio was 2/2, baseline vl of 178,000
Robert
Sounds like a very good and progressive doctor. According to some work being done in Sweeden, it may be that even though you were on a correct weight-based dose the first time, you were underdosed per your serum riba levels, especially in light of the fact that you're tolerating 8 riba's so well. Good luck with your PCR and let us all know how you do.
-- Jim
-- Jim
Jim,
You asked me a question in one of your posts further down the list. You wanted to know about my weight and why the doctor was prescribing me so much Riba. For my weight, I should be on 4 Riba's a day. However, my doctor knows I've been hard to get into a undetected status and with that European study about the high dosing on Riba, he decided-with my approval, to try it in me. So, I'm on 8 Riba's a day. The anemia has not been a problem at all. I take Procrit once a week. I've had more problems with the white cells, but that's caused by the Infergen, not the Riba. Interferon lowers your whites and Riba lowers the reds.
Susan
You asked me a question in one of your posts further down the list. You wanted to know about my weight and why the doctor was prescribing me so much Riba. For my weight, I should be on 4 Riba's a day. However, my doctor knows I've been hard to get into a undetected status and with that European study about the high dosing on Riba, he decided-with my approval, to try it in me. So, I'm on 8 Riba's a day. The anemia has not been a problem at all. I take Procrit once a week. I've had more problems with the white cells, but that's caused by the Infergen, not the Riba. Interferon lowers your whites and Riba lowers the reds.
Susan
Jim,
You asked me a question in one of your posts further down the list. You wanted to know about my weight and why the doctor was prescribing me so much Riba. For my weight, I should be on 4 Riba's a day. However, my doctor knows I've been hard to get into a undetected status and with that European study about the high dosing on Riba, he decided-with my approval, to try it in me. So, I'm on 8 Riba's a day. The anemia has not been a problem at all. I take Procrit once a week. I've had more problems with the white cells, but that's caused by the Infergen, not the Riba. Interferon lowers your whites and Riba lowers the reds.
Susan
You asked me a question in one of your posts further down the list. You wanted to know about my weight and why the doctor was prescribing me so much Riba. For my weight, I should be on 4 Riba's a day. However, my doctor knows I've been hard to get into a undetected status and with that European study about the high dosing on Riba, he decided-with my approval, to try it in me. So, I'm on 8 Riba's a day. The anemia has not been a problem at all. I take Procrit once a week. I've had more problems with the white cells, but that's caused by the Infergen, not the Riba. Interferon lowers your whites and Riba lowers the reds.
Susan
jim, i was just wondering...you cleared so early, had not that high of a starting VL and have had a rough ride. why would you consider going past 48 weeks? don't you have every GOOD qualification for SVR after completing only 48 weeks? are you not confident that you would stay clear if you quit after 48? can your body take the extra punishment? how is your GERD? and HGB?
My PA was strictly following the HALT C study, and was advising for maintance therapy after the initial 48 weeks. The plan was to drop to half dose, 90, and continue with no riba for 6 to 12 months. This is the same approach another member Revenire did..I think he went 82, or 88 weeks in total!
The logic is really not to increase SVR percentages per say, but to IMPROVE liver histology overall. As Rev went from a borderline stage 3/4, to a 2 with NO bridging, yet did not obtain SVR. The PA told me first hand stories of patients reversing from stages as high as 3, back to 1, under this maintance approach.
Jim, I was honestly going to do this, as it is what she recommended. But on the otherhand, I really wanted to go 60-72 at full dose, but she would not okay it. This was the problem, and the reason for me seeking out the advice of Schiff himself.
I ran all my options by him, and he chuckled at me, and asked if I liked Interferon that much..He told me to do 48, and call it quits. When pressed, I took it as you only what to subject your body to sooo much of these meds. And, he told me that new, more effective meds are not that far from becoming a REAL option.
And you are correct about the Fibroscan. I under went the procedure at week 42, close to the end of my tx.
The logic is really not to increase SVR percentages per say, but to IMPROVE liver histology overall. As Rev went from a borderline stage 3/4, to a 2 with NO bridging, yet did not obtain SVR. The PA told me first hand stories of patients reversing from stages as high as 3, back to 1, under this maintance approach.
Jim, I was honestly going to do this, as it is what she recommended. But on the otherhand, I really wanted to go 60-72 at full dose, but she would not okay it. This was the problem, and the reason for me seeking out the advice of Schiff himself.
I ran all my options by him, and he chuckled at me, and asked if I liked Interferon that much..He told me to do 48, and call it quits. When pressed, I took it as you only what to subject your body to sooo much of these meds. And, he told me that new, more effective meds are not that far from becoming a REAL option.
And you are correct about the Fibroscan. I under went the procedure at week 42, close to the end of my tx.
My conversation with my consult was almost verbatim as yours with Schiff. Only when pressed did he say that sometimes they will stage down the peg after 48 weeks on full-riba. From what you say, the idea here is different from the maintenance concept of the Halt-C study. Unfortunately, I'm not sure what exactly the idea is but maybe I'll try and get an email to the fellow. If I was a betting man, I'd bet I'll do 48 weeks and stop -- but one thing I've learned is never to bet on myself :) Thanks for the info.
-- Jim
-- Jim
Robert/Snook -- If I were anywhere in Florida, I'd run to the Schiff group not just for a good consult but even for the Fibroscan alone. Your fibrosis stage can actually drop on treatment and Fibroscan might pick that up. Not sure if that accounted for Snook's lower Fibroscan score but it is one possiblity because if I remember correctly he had his Fibroscan near the end of treatment?
Snook -- I don't have my notes handy on the "step-down" peg so it might have been half dose for the first six weeks and then quarter dose after that. Anyway, the concept was a stage-down although I regrettably never asked him the logic behind it.
Snook -- I don't have my notes handy on the "step-down" peg so it might have been half dose for the first six weeks and then quarter dose after that. Anyway, the concept was a stage-down although I regrettably never asked him the logic behind it.
All three of my consults also recomended 48 weeks, however, when pressed, one said he occasionally extends to 54 or 60 weeks by staging down the peg after week 48 but keeping the riba at full-dose. It would probably work something like this --
week 48-54 (3/4 dose peg, full riba); week 54-60 (half dose peg, full riba).
My question to you is did your PA also recommend full-dose riba with the half-dose peg or did they just want you to do half-dose peg without the riba. Also, did the idea of half-dose peg every come up with Schiff, and if so what did he say. Nice looking enzymes btw!
-- Jim
week 48-54 (3/4 dose peg, full riba); week 54-60 (half dose peg, full riba).
My question to you is did your PA also recommend full-dose riba with the half-dose peg or did they just want you to do half-dose peg without the riba. Also, did the idea of half-dose peg every come up with Schiff, and if so what did he say. Nice looking enzymes btw!
-- Jim
All very good questions/considerations and indeed I may not go beyond 48 weeks for the reasons you listed. As far as being "confident", well yes and no. I certainly am confident but not 100% confidence regardless of stats and therefore their lies the uncertainty. After all this is one mecurial disease. Right now I'm just keeping my options open and certainly how I feel at week 48 will be an important factor if I decide to continue but even so it won't be for that much longer. My Hgb is up now, GERD a little better, but for some reason the peg seems to be hitting me stronger than before and the "fog" is definitely there. Thanks for asking.
-- Jim
-- Jim
Yeah, as you know we both suffer VERY similar stats. Me, being 28 now, stage 2/3 fibrosis upon diagnosis, starting VL of 4000, and infected at birth.
I was just as you are now, looking for a "cure". I was set in going 52, 60, hell, 72 weeks of therapy if needed. I'm too young not to give it my all the first go round! My PA that oversees my tx, wanted me to do 48, then go on half dose Pegasys for 6 months to a year. I again, was willing to do what EVER it took to obtain the SVR status.
I searched the web, researched articles and studies, then I was fortunate enough to be seen by Dr Eugene Schiff. I racked his mind, demanded answers, and presented him with ALL my information. I actually came to the initial visit with a folder of everything, every labe and test done since diagnosis. He spent 45 minutes or so analyzing this info before even talking with me.
His answer,"Extended tx ONLY benefits slow responders, or those who have failed previous 48 week therapies"..
Again, Schiff is considered the "godfather" of livers, and respected worldwide.
My situation was a bit different also in the fact that though I tested undetectable since week 12, my ALT's NEVER obtained a normal reading. They fluctuated between a high of 128 a week 2, to 60 by week 36, and back up to 90's at week 42. I finished off 60's. This was a MAJOR concern on my part, as I took it as a precurser for relapse.
His answer, "15-20% of patients undergoing anti-viral therapy for HCV will NEVER obtain "normal" ALT until the discontiuation of therapy".
Well, one month post tx, AST 19, and ALT 23!!! Still undetectable, and very very confident!!
Schiff also had me undergo a new procedure called the Fibroscan, which tests liver stiffness. My readings where in the 4-5 range, which I was told correlates to a fibrosis staging of 1..
Again, very very confident!
I know your in Florida, and if you would like a second opinion, I can get you in contact with Schiff, or his collegue, Dr Lennox Jeffors.
The Fibroscan cost me $53, and worth every penny in my opinion!
I was just as you are now, looking for a "cure". I was set in going 52, 60, hell, 72 weeks of therapy if needed. I'm too young not to give it my all the first go round! My PA that oversees my tx, wanted me to do 48, then go on half dose Pegasys for 6 months to a year. I again, was willing to do what EVER it took to obtain the SVR status.
I searched the web, researched articles and studies, then I was fortunate enough to be seen by Dr Eugene Schiff. I racked his mind, demanded answers, and presented him with ALL my information. I actually came to the initial visit with a folder of everything, every labe and test done since diagnosis. He spent 45 minutes or so analyzing this info before even talking with me.
His answer,"Extended tx ONLY benefits slow responders, or those who have failed previous 48 week therapies"..
Again, Schiff is considered the "godfather" of livers, and respected worldwide.
My situation was a bit different also in the fact that though I tested undetectable since week 12, my ALT's NEVER obtained a normal reading. They fluctuated between a high of 128 a week 2, to 60 by week 36, and back up to 90's at week 42. I finished off 60's. This was a MAJOR concern on my part, as I took it as a precurser for relapse.
His answer, "15-20% of patients undergoing anti-viral therapy for HCV will NEVER obtain "normal" ALT until the discontiuation of therapy".
Well, one month post tx, AST 19, and ALT 23!!! Still undetectable, and very very confident!!
Schiff also had me undergo a new procedure called the Fibroscan, which tests liver stiffness. My readings where in the 4-5 range, which I was told correlates to a fibrosis staging of 1..
Again, very very confident!
I know your in Florida, and if you would like a second opinion, I can get you in contact with Schiff, or his collegue, Dr Lennox Jeffors.
The Fibroscan cost me $53, and worth every penny in my opinion!
Like I said intially, it's a judgement call. And it's very normal to feel you have to do more to increase your odds of SVR.
That said, your stats seem quite encouraging, at least for a
geno 1. I also get a sense from your first post that you're very concerned about your chance for SVR. Like some others, I feel -- especially given your stats -- that you can do better than the 67% SVR rate in the older study you cite. Like I mentioned in an earlier post I was given 80-90% chance of SVR with lesser stats based on 48-weeks of tx and clearing at week 6.
What came to mind in looking at your stats is how similar they seemed to one of our other members, Snookmeister. He is also around your age, and was aslo infected at birth but not sure if from a tranfusion. his doctor, Eugene Schiff -- extrememly well known and respected -- also recommended not to treat beyond 48 weeks. Maybe Snookmeister will chime in with some more details. Not sure what odds Schiff gave Snook for SVR but I believe he's non-detectible at 30-days post treatment which is very encouraging.
This is all not to say you shouldn't extend treatment to 60 days. That's a decision only for you to make and I may well indeed extend longer than what my doctors suggest. However, try and get as many facts and opinions on the matter before making the decision and don't just base the decision too heavily on the 67% number from a four-year old study. You might want see another hepatologist or two for additional consults. You still have lots of time to decide.
All the best your decision and may treatment be kind to you but unkind to the virus.
-- Jim
That said, your stats seem quite encouraging, at least for a
geno 1. I also get a sense from your first post that you're very concerned about your chance for SVR. Like some others, I feel -- especially given your stats -- that you can do better than the 67% SVR rate in the older study you cite. Like I mentioned in an earlier post I was given 80-90% chance of SVR with lesser stats based on 48-weeks of tx and clearing at week 6.
What came to mind in looking at your stats is how similar they seemed to one of our other members, Snookmeister. He is also around your age, and was aslo infected at birth but not sure if from a tranfusion. his doctor, Eugene Schiff -- extrememly well known and respected -- also recommended not to treat beyond 48 weeks. Maybe Snookmeister will chime in with some more details. Not sure what odds Schiff gave Snook for SVR but I believe he's non-detectible at 30-days post treatment which is very encouraging.
This is all not to say you shouldn't extend treatment to 60 days. That's a decision only for you to make and I may well indeed extend longer than what my doctors suggest. However, try and get as many facts and opinions on the matter before making the decision and don't just base the decision too heavily on the 67% number from a four-year old study. You might want see another hepatologist or two for additional consults. You still have lots of time to decide.
All the best your decision and may treatment be kind to you but unkind to the virus.
-- Jim
spoke to doc today and even though I cleared at 12 weeks with a low VL of 178,000 I am going 60 total weeks just to be sure...does this bring up my SVR shot...thx to all....
JmJm I look forward to your reply as always....
Robert (the eye photo)
JmJm I look forward to your reply as always....
Robert (the eye photo)
Unlikely your chance of SVR affected.My doctor says RBV more critical in early stages while achieving non-detectable status,than later on.
HVC patients tend to get very involved with statistics,but it's a lottery who clears.If your virus is undectable on treatment you have responded and it's you,not patients in study groups that matters.
HVC patients tend to get very involved with statistics,but it's a lottery who clears.If your virus is undectable on treatment you have responded and it's you,not patients in study groups that matters.
The graph is for alpha-2a the type of interferon we are taking now. And the numbers do seem higher than all the others that I have seen published. Peace
hmmm interesting slide ..now a question if I may.....Geno 1a here. I missed one interferon shot at 5 wks due to low neuts but still was neg. at 12 week pcr.....missed one dose of 3 Riba pills at approx. 24 weeks due to brain fog and then again about 4 weeks ago (41 weeks)due to pharmacy error. I was also given a 1 out of 6 pills a day reduction two weeks ago (44 weeks) due to low hemoglobin and then I missed 3 ribas again last week (45 weeks)due to brain fog, (omg I will be glad when this is over) I am still on reduced Riba and doing my third last shot tonight :) I am really 46 weeks but going to be doing an extra shot and going 49 weeks due too the missed shot at week 5. I am wondering if I lose that extra 10% chance of svr because of dose reductions or what? Or as the majority is near the end of tx should I even worry? Any comments would be helpful..thank you!!
ifx23 :)
ifx23 :)
Hi Robert !
That's a real judgement call. But forgive my declining memory, what was your geno, biopsy stage, etc. What drugs are you treating with and what amounts are you treating for the first time? Was the week 12 test your first PCR and what was the sensitivity of the test?
Meanwhile, I can relate my case if that helps. I'm 59, geno 1b,stage between 2 and 3, pre-tx viral count 1.5 million. Three well-known hepatologists all suggested 48 weeks based on me being non-detectible at week 6. I'm guessing it would have been the same call if I was non-detec at week 12. Their feeling is that the advantages of continuing beyond 48 weeks simply isn't warranted when weighed against the risk of longer exposure to the treatment drugs.
That said, as I approach shot 41, I haven't fully made up my mind how long I will treat. A month ago, I didn't think I'd make week 42 which has always been my bottom line. Now I'm shooting for the full-48 weeks but plan on talking to my treating hepatogist about extending or at least staging down the interferon to 54 or 60 weeks while possibly increasing the riba. As you can see I haven't made up my mind yet and don't really feel it necessary until the time comes. A lot will depend on how I'm feeling, my lab numbers and how I wake up that day. :)
-- Jim
That's a real judgement call. But forgive my declining memory, what was your geno, biopsy stage, etc. What drugs are you treating with and what amounts are you treating for the first time? Was the week 12 test your first PCR and what was the sensitivity of the test?
Meanwhile, I can relate my case if that helps. I'm 59, geno 1b,stage between 2 and 3, pre-tx viral count 1.5 million. Three well-known hepatologists all suggested 48 weeks based on me being non-detectible at week 6. I'm guessing it would have been the same call if I was non-detec at week 12. Their feeling is that the advantages of continuing beyond 48 weeks simply isn't warranted when weighed against the risk of longer exposure to the treatment drugs.
That said, as I approach shot 41, I haven't fully made up my mind how long I will treat. A month ago, I didn't think I'd make week 42 which has always been my bottom line. Now I'm shooting for the full-48 weeks but plan on talking to my treating hepatogist about extending or at least staging down the interferon to 54 or 60 weeks while possibly increasing the riba. As you can see I haven't made up my mind yet and don't really feel it necessary until the time comes. A lot will depend on how I'm feeling, my lab numbers and how I wake up that day. :)
-- Jim
Just to tie this in with your original post, I was given an 80-90% chance of SVR by all three hepatologists based on being non-detec, 48 weeks or treatment and full compliance. The 80-90% sounded a little high to me -- as the studies are inconclusive once you add in all the variables -- but I'll take it :)
-- Jim
-- Jim
Jim,
here are my stats:
26 years old, got hep c from blood transfusion at birth...bio was stage 2 (very very mild fibrosis), type 1b, baseline VL was 178,000, prior to tx my liver enzymes were super high and by week 2 they were normal...I cleared at week 12 for sure but doc thinks maybe even 4 but no PCR....looking forward to 60 total weeks to get to SVR
robert
here are my stats:
26 years old, got hep c from blood transfusion at birth...bio was stage 2 (very very mild fibrosis), type 1b, baseline VL was 178,000, prior to tx my liver enzymes were super high and by week 2 they were normal...I cleared at week 12 for sure but doc thinks maybe even 4 but no PCR....looking forward to 60 total weeks to get to SVR
robert
I am glad the platelets have rebounded. I don't really understand those platelets other than their effect on clotting. I don't know how you are functioning with the hgb in the nines. Just take it easy during this holiday season and don't get stressed.
Kathy
Kathy
Askew? No, my numbers are aligned... in a nice flatline!
Actually, platelets has been the biggest concern of late and that took a little bounce on Thurs - so now I'm all happy for the weekend :)
hgb is down to 9.2 - but I've stepped up the procrit, and I'm managing OK while I wait for a bounce there.
Thanks for asking.
Actually, platelets has been the biggest concern of late and that took a little bounce on Thurs - so now I'm all happy for the weekend :)
hgb is down to 9.2 - but I've stepped up the procrit, and I'm managing OK while I wait for a bounce there.
Thanks for asking.
A couple things related to the 67% number that's shown here from the Fried data (note - they used 1,000 - 1,200 mg. of riba along with Pegasys in this study):
- no patient in this study was given growth factors (i.e. - Neupogen or Procrit). Therefore it is possible that some of the 33% - 43% who didn't make it to SVR, might have if they hadn't dropped out along the way due to low ANC, WBC, Hg, etc.
- the 'full-dose' group ends up with a 67% SVR. But what is the definition of "full dose" they used here? Is it the 80-80 commonly batted around (i.e. - 80% of the meds taken over 80% over the timeframe)? If so, that 67% (not to mention the 57%) figure would be somewhat higher if 100-100 compliance were to be applied.
TnHepGuy
- no patient in this study was given growth factors (i.e. - Neupogen or Procrit). Therefore it is possible that some of the 33% - 43% who didn't make it to SVR, might have if they hadn't dropped out along the way due to low ANC, WBC, Hg, etc.
- the 'full-dose' group ends up with a 67% SVR. But what is the definition of "full dose" they used here? Is it the 80-80 commonly batted around (i.e. - 80% of the meds taken over 80% over the timeframe)? If so, that 67% (not to mention the 57%) figure would be somewhat higher if 100-100 compliance were to be applied.
TnHepGuy
Hey Robbert - that is interesting to see in print. The results are disappointing for those not considered early responders at 12 weeks. I think that should really make those of us who are not early responders to consider changing the tx approach.
Hey - I have good news. As I have previously posted, my 12 week PCR was done at the 2 IU/ml sensitivity and showed me positive at 40 IU/mL. I requested a 16 week PCR but it was done at the hemotologist office, not thru the GI and they by mistake ran a test only sensitive to 50 IU/mL. Then the GI would not order another one, saying the insurance co would not pay for 8 weeks. Today I was at the hemotologist's office, and told the nurse what had happened. They are going to do a Hepamix (however you spell that) sensitive to 5 IU/mL today at no charge. Whoopie -- I am getting my 20 week PCR. We have had discussions about the sensitivity of tests before, and I have to tell you -- once you have had the most sensitive one, you just can't go back. Even if it is negative, there is that gnawing insecurity.
friole
Hey - I have good news. As I have previously posted, my 12 week PCR was done at the 2 IU/ml sensitivity and showed me positive at 40 IU/mL. I requested a 16 week PCR but it was done at the hemotologist office, not thru the GI and they by mistake ran a test only sensitive to 50 IU/mL. Then the GI would not order another one, saying the insurance co would not pay for 8 weeks. Today I was at the hemotologist's office, and told the nurse what had happened. They are going to do a Hepamix (however you spell that) sensitive to 5 IU/mL today at no charge. Whoopie -- I am getting my 20 week PCR. We have had discussions about the sensitivity of tests before, and I have to tell you -- once you have had the most sensitive one, you just can't go back. Even if it is negative, there is that gnawing insecurity.
friole
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