Aa
Am I a non-responder?
Hello! Got diagnosed with HCV, genotype 1b two years ago. Looks like I've had it for at least 30 years now - had a blood transfusion in 1970s... I am now on week 14 of TX (pegasys + ribavirin). Don't feel any side effects at all, except for some mild hair shedding. I also drink plenty of water, and feel very good, actually better than before the therapy. Got more energy. Yet, my PCR test results are ... a buzz killer:
- 3 weeks before therapy- 280,000
- 1 week before therapy - 1,060,000
- week 4 of therapy - 13,000
- week 8 on therapy - 2,575
- week 12 on therapy - 66,742
- week 13 on therapy - 103,000
Looks like a roller-coaster ride to me... Am I a non-responder? My doc is suggesting keep on the current meds will week 24 and then if the virus is still detectable, switch me on infergen.
I am still hopeful... but my optimism is kind of down now when I got my labs done for week 12...
Anyone had the same happen to them as far as viral load climbing up? Is pegasys not working for me?
- 3 weeks before therapy- 280,000
- 1 week before therapy - 1,060,000
- week 4 of therapy - 13,000
- week 8 on therapy - 2,575
- week 12 on therapy - 66,742
- week 13 on therapy - 103,000
Looks like a roller-coaster ride to me... Am I a non-responder? My doc is suggesting keep on the current meds will week 24 and then if the virus is still detectable, switch me on infergen.
I am still hopeful... but my optimism is kind of down now when I got my labs done for week 12...
Anyone had the same happen to them as far as viral load climbing up? Is pegasys not working for me?
This appears to be a classic case of non response, alright. I suppose given that you tolerate treatment so well, you might explore further response until week 24; but to be honest the odds of you actually succeeding in achieving sustained response are minuscule at this point. You did not achieve a 2 log 10 reduction in viral load at the 12 week juncture; and projecting your viral response now leaves a very gloomy picture. A two log reduction using the baseline load of 1,060,000 would have been 10,600 IU/mL. Although you did achieve that figure earlier in treatment, it appears you have suffered viral breakthrough of sorts. The doctor suggests continuing until W24; you might ask him his reasoning behind this?
If you have little fibrosis at this point, it is probably a much better idea to forgo any further treatment until the new PI drugs arrive out of clinical trial… right now that looks as though it might be as early as mid 2011. At that point, you can take another look and see what the advertised SVR rates are; as well as the treatment duration. Right now, the clinical data suggests an SVR rate for treatment naive patients at around 70% for GT-1 patients, and a possible duration of 24 weeks for some of the patient population. This may change slightly as the drugs approach market, but this would be the plan I’d opt for in your position if possible.
Best to you—
Bill
If you have little fibrosis at this point, it is probably a much better idea to forgo any further treatment until the new PI drugs arrive out of clinical trial… right now that looks as though it might be as early as mid 2011. At that point, you can take another look and see what the advertised SVR rates are; as well as the treatment duration. Right now, the clinical data suggests an SVR rate for treatment naive patients at around 70% for GT-1 patients, and a possible duration of 24 weeks for some of the patient population. This may change slightly as the drugs approach market, but this would be the plan I’d opt for in your position if possible.
Best to you—
Bill
right now, i would say you are a slow responder, but the rise in viral load from week 8 on is not the greatest of signs. However, that being said, the only real number that matters at this time is week 24. I think you stay with it and see what happens.
Looks like you got tuff virus on your hands,i think 1b is the hardest to treat.This is just my opinion, if it were me,I would ask to start the intergen now because it looks like by your VL numbers you are not going to go UD by week 24 regardless if you continue this way.Other option is to go on the PI drugs coming out in a few months if you can afford to wait...you are a non responer on my view....you need the protese drugs
Thank you, Bill. I have an appointment with my doctor next week, will ask him what his logic is... Does it sound to you like infergen is not going to be helpful either if I get switched on it now?
There will be new trials with the new PI drugs soon and they are even more effective than the current ones.One is the BOCEPREVIR 00518...10 x more effective than than the BOC trial i am in now,dont give up,there is good reason to bo optimistic....what stage are you....2...3..?
I agree - it looks like I am a slow responder, or to be accurate what they call "a partial responder", which at the end almost always lead to relapse... If I found at least 1 person on this forum who had the same stuff going on and achieved SVR, I would be delighted to get my hopes up... :)
In my first round of TX my VL was 25 million,i was at 475 VL at week 12, somewhere between week 12 and 24 i went UD,after 48 weeks of TX and relapsed.I was geno 1a.
Thank you for your encouragement! I am debating between asking to switch me on infergen now or waiting till PI will be available. Can't find any trials on Boceprevir going on in Seattle/Tacoma area though... Actually, can't find any trials that would be suitable for me in this area now.
I refused to do liver biopsy, so have no idea what my stage is. But my liver enzymes have always been normal, never experienced any symptoms either, except I have always run 37.2 fever. Got diagnosed with HCV by occasion - when did all my labs before going through IVF treatment. Then picked up my childhood medical records (I was born in another country), and there was a note in my birth chart/hospital release - nonA/nonB hepatitis... I guess, that was it - as I got blood transfusion when I was born as a preemie.
One thing for sure - I will not give up :) !
I refused to do liver biopsy, so have no idea what my stage is. But my liver enzymes have always been normal, never experienced any symptoms either, except I have always run 37.2 fever. Got diagnosed with HCV by occasion - when did all my labs before going through IVF treatment. Then picked up my childhood medical records (I was born in another country), and there was a note in my birth chart/hospital release - nonA/nonB hepatitis... I guess, that was it - as I got blood transfusion when I was born as a preemie.
One thing for sure - I will not give up :) !
Infergen *might* change the viral kinetics enough to elicit a response; as well as a change from Pegasys to PEG-Intron. I was a late responder in my initial treatment attempt; I didn’t achieve a 2 log reduction at week 12, but missed it by several hundred IU/mL only. Trying so influence statistics, I increased ribavirin intake from 1200 to 1800 mg/day, and increased duration from 48 to 56 weeks, but relapsed within 30 days post treatment.
On second treatment, I was prepared for Infergen, but my hepatologist didn’t have much faith in the numbers it provided. He suggested switching from Pegasys to PEG-Intron; I increased the ribavirin again to 2000mg/day, and increased Tx duration to 96 weeks. This produced SVR (sustained Viral Response) finally, but it was a long road.
If I had less fibrosis, and was in a different time frame, I might have deferred treatment to a later date. At that time, the protease inhibitors were still more theory than they are now. With the final data in from phase three trials, there release now appears imminent. I had late stage 3 damage, and had possibly progressed into early cirrhosis by the time it was all said and done; this amount of scaring can change treatment dynamics, obviously.
Again, talk with your GI or Hepatologist, and get their take on the situation again. You might ask for an additional opinion as well; null response does put you into a hard-to-treat category now.
All the best to you, and check back on this thread early next week to get other views on this… the forum is generally quiet on weekends.
Take care—
Bill
On second treatment, I was prepared for Infergen, but my hepatologist didn’t have much faith in the numbers it provided. He suggested switching from Pegasys to PEG-Intron; I increased the ribavirin again to 2000mg/day, and increased Tx duration to 96 weeks. This produced SVR (sustained Viral Response) finally, but it was a long road.
If I had less fibrosis, and was in a different time frame, I might have deferred treatment to a later date. At that time, the protease inhibitors were still more theory than they are now. With the final data in from phase three trials, there release now appears imminent. I had late stage 3 damage, and had possibly progressed into early cirrhosis by the time it was all said and done; this amount of scaring can change treatment dynamics, obviously.
Again, talk with your GI or Hepatologist, and get their take on the situation again. You might ask for an additional opinion as well; null response does put you into a hard-to-treat category now.
All the best to you, and check back on this thread early next week to get other views on this… the forum is generally quiet on weekends.
Take care—
Bill
Wow, I can imagine how it felt to see your test results showing you relapsed after the tx was done. How are you doing now? Are you participating in any trial now?
Unfortunately, it’s possible to progress into and through significant damage, and even cirrhosis with normalized liver enzymes; these just aren’t an accurate way to predict damage. About 30% of HCV patients present with in-range AST/ALT.
If you cannot undergo needle biopsy, even one of the so called ‘surrogate’ blood tests such as Fibrosure/Fibrospect might give you an idea of your grade and stage of disease. I haven’t heard much positive feedback on these tests; but they may be better than a guess.
Are you seeing someone at University of Washington now?
Again, nothing but the best—
Bill
If you cannot undergo needle biopsy, even one of the so called ‘surrogate’ blood tests such as Fibrosure/Fibrospect might give you an idea of your grade and stage of disease. I haven’t heard much positive feedback on these tests; but they may be better than a guess.
Are you seeing someone at University of Washington now?
Again, nothing but the best—
Bill
Really, I am ok with a long road, will do anything to get rid of this annoying HCV... Your story is very encouraging, Bill! Did you have 1b genotype?
No, I was GT-1a, but I believe there is very little distinction between the two, at least from a clinical standpoint. I also have insulin dependant diabetes, which in itself is considered a negative predictor for SVR. I do consider myself very fortunate :o).
Bill
Bill
I agree with some of the others that waiting for the new drugs would be the best bet.
Waiting to see at 24 weeks is just prolonging taking very harsh drugs, most likely for nothing. The "2 log drop by 12 weeks" and "must be undetectable by 24 weeks" protocols are soon to be a thing of the past. To have a real chance to clear this virus you have to be clear by 12 weeks at the latest! The up to date Hepatologists are starting to use this protocol knowing not many SVR responding later then 12 weeks. They are realizing that clearing late gives the patient very little chance to SVR.
Sounds like you may have been UNDER dosed with ribavirin. What is your weight and how much riba are you on? Did your HGB drop a few points? By you saying you feel good is not a good sign when on TX. When this TX is working properly most will feel bad. Usually from anemia cause by the ribavirin.
Best of luck what ever you decide
Waiting to see at 24 weeks is just prolonging taking very harsh drugs, most likely for nothing. The "2 log drop by 12 weeks" and "must be undetectable by 24 weeks" protocols are soon to be a thing of the past. To have a real chance to clear this virus you have to be clear by 12 weeks at the latest! The up to date Hepatologists are starting to use this protocol knowing not many SVR responding later then 12 weeks. They are realizing that clearing late gives the patient very little chance to SVR.
Sounds like you may have been UNDER dosed with ribavirin. What is your weight and how much riba are you on? Did your HGB drop a few points? By you saying you feel good is not a good sign when on TX. When this TX is working properly most will feel bad. Usually from anemia cause by the ribavirin.
Best of luck what ever you decide
I am 180 lb, taking 1200 mg ribavirin a day. Never became anemic, ALL tests come out normal, except for viral load...
No, I’m sorry; I don’t know any staff personally. I have heard from others here that they have an excellent hepatology department though. Any time you can connect with a large teaching hospital, they are more likely to provide cutting edge knowledge and service to patients than a regional GI doc.
Bill
Bill
Bill is a trustworthy source of information. He cured some time ago but never lost his fascination for the disease and keeps abreast of what's going. He is also the only poster I consistently agree with and I would stand behind his opinion on your situation as well.
Having only a temporary dip in your VL shows that the interferon helped a bit at first and then failed to establish a pattern the way it should have. I don't think you are a responder. Hep C is a relatively weak RNA virus that is just very good at hiding from your immune sytem. Interferon can induce extra virus killing cells but they can't do their job if they can't 'find' the virus. Other forms of interferon exist but it's hard to predict if they will be more effective against your strain than the current form you are on.
1b's are not more resistant than other geno's; that was a finding in one small study; wish they would stop publishing those little studies, since they are so misleading to net searchers. I was a 1b with a low VL and cleared after 1 week because I was one who was very responsive to interferon. Many, many people who ARE responsive have dramatic, miserable drops in hemoglobin. You don't have that SX.
The current research goals on HCV Treatment are to shorten TX time in order to reduce the patients exposure to interferon, which can cause permanent damage to the human body from long exposure. If it were me, I would try to damp down that desire to "do anything" to keep treating, get out of TX and wait for the triple therapy (Interferon/ribavirin/protease inhibitor) to be approved in 2011. The current PI's being trialed for 2011 release are showing good promise for both non-responders and relapsers.
Having only a temporary dip in your VL shows that the interferon helped a bit at first and then failed to establish a pattern the way it should have. I don't think you are a responder. Hep C is a relatively weak RNA virus that is just very good at hiding from your immune sytem. Interferon can induce extra virus killing cells but they can't do their job if they can't 'find' the virus. Other forms of interferon exist but it's hard to predict if they will be more effective against your strain than the current form you are on.
1b's are not more resistant than other geno's; that was a finding in one small study; wish they would stop publishing those little studies, since they are so misleading to net searchers. I was a 1b with a low VL and cleared after 1 week because I was one who was very responsive to interferon. Many, many people who ARE responsive have dramatic, miserable drops in hemoglobin. You don't have that SX.
The current research goals on HCV Treatment are to shorten TX time in order to reduce the patients exposure to interferon, which can cause permanent damage to the human body from long exposure. If it were me, I would try to damp down that desire to "do anything" to keep treating, get out of TX and wait for the triple therapy (Interferon/ribavirin/protease inhibitor) to be approved in 2011. The current PI's being trialed for 2011 release are showing good promise for both non-responders and relapsers.
I am also going for the "wait for the new drugs", since trials has showed that peg alfa-2a (pegasys) gives best results for your GT of the current treatments.
you are a perfect example why PCR's should be givin early & often in treatment so doctor can adjust RX. Perhaps your Riba could have been increased to 1400 or 1600 until UNde and noticeable drop in HGB. Then decrease back to 1200. Even adding something like Aliana is worth a try early on. Whatever is takes to be undetectable by 12 weeks !
Yes,i am currently in a trial,check out my profile for details,and Bill,WOW...didnt realize you did such a long TX,Were your sdes really bad?...How are your EOT sides?
A total commitment is paramount to reaching the ultimate in
performance." -- Tim Flores
A total commitment is paramount to reaching the ultimate in
performance." -- Tim Flores
Do you think it's too late now to increase my ribavirin dosage? If it's done after 12 weeks?
I am thinking about waiting till 2011 - I just hope that in 2011 we do get the drugs instead of being told to wait another 5 to 10 years... The fact that I probably had this virus in my body for the last 30 years kind of scares me, although on another side, I really feel great and am very active, full of energy. My pressure is my kids now - I know I have to get rid of this virus to stay a healthy and happy mom for them.
Ribavirin has no role in initially suppressing viral load.
It (helps) prevent relapse by causing mutational error when the virus rallies against the effect of the interferon.It is most important during the period when the viral load is being driven down to undetectable levels.
It's all rather involved,but if it gives you any comfort your non-response is down to your lack of sensitivity to interferon.
It is true however that if you did not experience a significant drop in haemoglobin you could probably tolerate more ribavirin next time..
It (helps) prevent relapse by causing mutational error when the virus rallies against the effect of the interferon.It is most important during the period when the viral load is being driven down to undetectable levels.
It's all rather involved,but if it gives you any comfort your non-response is down to your lack of sensitivity to interferon.
It is true however that if you did not experience a significant drop in haemoglobin you could probably tolerate more ribavirin next time..
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