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?
not sure if you posted this but do you know what, if any liver damage you have? if you don't have any or little why not wait for the new drugs? why put yourself through this when new drugs are right around the corner. The only reason I would think a doctor would put you on infergen is because you have severe liver damage. Other then that you should NOT be on it. Just my opinion of course.
A quick update. At week 16 pegasys + riba my viral load was 94,000 - killed the last hope - obviously I was not responding to this therapy. Last week switched to daily infergen plus riba. First two days on infergen were TOTAL HELL - very high fever, chills, and pain allover my body. Couldn't sleep at night at all due to the pain. But after two days - I am back to feeling normal again. The only problem - my hair loss got much worse. In three weeks will have my viral load labs done... Keeping my fingers crossed.
Thank you so much for the encouragement! I know it might take several tries and a long time, but at the end the dragon will be beaten :) I am so glad I found this forum, it's really helpful to see all the stories and what other people have to go through and what they can advise from their own experience. And all the encouragement here definitely helps, a lot.
I talked to my GI doc today, he is suggesting to wait till 24 weeks on the same treatment and then decide whether switch on infergen or wait for PI drugs to enter the market finally. But we are also seeking a second opinion now, with a hepatologist, will know more by the end of the week.
In general, though, life is good. Seriously :)
I talked to my GI doc today, he is suggesting to wait till 24 weeks on the same treatment and then decide whether switch on infergen or wait for PI drugs to enter the market finally. But we are also seeking a second opinion now, with a hepatologist, will know more by the end of the week.
In general, though, life is good. Seriously :)
Hang in there sunshine...if you look around in here you will see many people that had to retreat and were successful at last.
One of the things that might have been rather telling for you earlier on is that you experienced relatively no sides. While it's not scientific to the nth degree...oftentimes this can mean you were underdosed to begin with. Sad fact with this treatment is that some major discomfort is not a bad thing.
As you have read now early PCRs are crucial. Myself I was a geno1A and also 1B. There is no real difference between the two but I was paranoid it would be double as hard to get cured so I over did the riba in a major way. Still at week 12 I was detectible and it was only at my 24 week test I was UND. Like Bill I extended (but only to 72 weeks.....he did 96 which still amazes me).
The point I'm trying to make here is that a lot of us really see tailoring your treatment as really crucial. That is why early and frequent PCRs are so important...if you aren't hitting the right marks or something you can always try to tweak it up a bit.
Your best bet is to stop and regroup and then attack it again full tilt. l read the thread but don't see your stage liver damage (I'm at work and always have to rush so I could have missed it easily). If you have the time waiting another year or two after this long isn't a big deal and the PIs show so much promise.
If you do have later stage then finding a doc who might be a bit more aggressive and up to date on things would definitely be the way to go. You just gotta work on getting to UND by week 12 or if not by week 24. Completely.
Good luck!
One of the things that might have been rather telling for you earlier on is that you experienced relatively no sides. While it's not scientific to the nth degree...oftentimes this can mean you were underdosed to begin with. Sad fact with this treatment is that some major discomfort is not a bad thing.
As you have read now early PCRs are crucial. Myself I was a geno1A and also 1B. There is no real difference between the two but I was paranoid it would be double as hard to get cured so I over did the riba in a major way. Still at week 12 I was detectible and it was only at my 24 week test I was UND. Like Bill I extended (but only to 72 weeks.....he did 96 which still amazes me).
The point I'm trying to make here is that a lot of us really see tailoring your treatment as really crucial. That is why early and frequent PCRs are so important...if you aren't hitting the right marks or something you can always try to tweak it up a bit.
Your best bet is to stop and regroup and then attack it again full tilt. l read the thread but don't see your stage liver damage (I'm at work and always have to rush so I could have missed it easily). If you have the time waiting another year or two after this long isn't a big deal and the PIs show so much promise.
If you do have later stage then finding a doc who might be a bit more aggressive and up to date on things would definitely be the way to go. You just gotta work on getting to UND by week 12 or if not by week 24. Completely.
Good luck!
It means that the pegasys can't knock the virus down during this particular round of treatment-like you say the virus has got the upper hand.
That's not the end of the story though-when you treat again the response could be very different,particularly if one of the new drugs is added to mix.
Hep C treatment is racing ahead and you will get to benefit.
That's not the end of the story though-when you treat again the response could be very different,particularly if one of the new drugs is added to mix.
Hep C treatment is racing ahead and you will get to benefit.
Sorry, I probably ask dumb questions - but did I understand both your and copyman's posts as suggestions that in my case the virus has probably successfully mutated and now pegasys will not work for me anymore?
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