Aa
Poor 12 week PCR results
My dearest friend is geno 1b with start viral load of 24 million. No biopsy was initially done unfortunately so we don't know his stage. He recently started PegIntron/Riba tx and at week 4 PCR had dropped to 170,000 VL. It was so encouraging. His 12 week PCR unfotunately showed no more reduction of VL since week 4! (12 wk PCR taken at wk 15 due to travelling). He just recievced this news today from his doctor and is desperate to know what to do next. What course of action have others here taken with this heartbreaking news when the VL doesn't drop beyond week 4? I am hoping to help him with some suggestions but wanted to post this before I suggest anything inacurate. (You all have been so helpful to me during my present tx which has been brutal at times.)His doctor asked for another PCR test today to be sure it was not in error. One option his doctor suggested was changing from PegIntron to Pegasys to see if that takes the VL any lower. What about raising the Riba?(he is on 6 presently which is high for his weight already). When does one consider daily Infergen and is this in combo with Riba? What other suggestions do others here have? Any words of advice would be so appreciated. I am feeling so badly as I encouraged him to start tx (he was very hesitant) as it has worked so well for myself (undetectable at wk 12 and now doing wk 44 or 48.) and now he is not responding as we had so hoped for. What is the course of action with a situation like his? I know so many others have been down this road and your suggestions are so greatly appreciated. Best to you all, Scott
Well I might not be a poet;-), but I sure see you sort of as if you are sitting there with a video game kicking the cr*p out of those suckers. You are the most aggressive fighter of these bugs I've known yet...and I am sure glad we are on the SAME SIDE HERE! ;-) I'd hate to have you trying to kill me as aggressively as you try to kill THEM! :)
Honestly - it makes sense to ME that we should be given as much Riba as we can tolerate in one sense. I mean if the goal is to keep them from replicating with it.......than the more the merrier!
I am VERY glad I started at 1,000 and not the 8,00 that the doctor originally said. Listening to your advice has helped me greatly I am SURE.
Debby
John said prev: "You've been showing clear since 6 weeks right? So after 36 weeks of being clear what would be the reason for upping it now?"
---------------------------------------
I guess I'm one of those people that just can't leave well enough alone :)
Seriously though, my plan from the beginning was to use higher doses of riba ala the Sweedish Study which I did for a short while. Then MS anemia had her say and I did most of tx at 1200mg/day until about two weeks ago when I had to drop down to 1000mg.
I started feeling a little better but I didn't attribute it to the reduced dose so last week I decided to go back up to 1200mg after 11 days at 1000mg. My current weight is 150 down from 175 pre-tx. Now pondering going a little higher after week 42 which is like in two weeks. The idea as NYGirl so poetically put it is to kill off any suckers still lurking below detection to ward against relapse. No real decision yet and if I start to feel like cr*p again I'll probably back off.
BTW I cannot strongly enough say that I do NOT recommend this approach to anyone and my back up plan is to simply stop treatment if I run into a problem. The risks go with the territory and my territory is something around a stage 3.
But whatever happens, I'd still have 42 weeks under my belt.
The other thought is to start phasing down the Peg from somewhere around week 42 to 48 to maybe week 54. One doctor said he does this with some of his patients but I haven't yet discussed this with my treating doctor yet. Right now, the psoriasis is one of my most troublsome sides and it is interferon, not riba related.
Hope this finds you well John.
-- Jim
---------------------------------------
I guess I'm one of those people that just can't leave well enough alone :)
Seriously though, my plan from the beginning was to use higher doses of riba ala the Sweedish Study which I did for a short while. Then MS anemia had her say and I did most of tx at 1200mg/day until about two weeks ago when I had to drop down to 1000mg.
I started feeling a little better but I didn't attribute it to the reduced dose so last week I decided to go back up to 1200mg after 11 days at 1000mg. My current weight is 150 down from 175 pre-tx. Now pondering going a little higher after week 42 which is like in two weeks. The idea as NYGirl so poetically put it is to kill off any suckers still lurking below detection to ward against relapse. No real decision yet and if I start to feel like cr*p again I'll probably back off.
BTW I cannot strongly enough say that I do NOT recommend this approach to anyone and my back up plan is to simply stop treatment if I run into a problem. The risks go with the territory and my territory is something around a stage 3.
But whatever happens, I'd still have 42 weeks under my belt.
The other thought is to start phasing down the Peg from somewhere around week 42 to 48 to maybe week 54. One doctor said he does this with some of his patients but I haven't yet discussed this with my treating doctor yet. Right now, the psoriasis is one of my most troublsome sides and it is interferon, not riba related.
Hope this finds you well John.
-- Jim
Hi Scott;
When I suggested that some have done the split doses of Peg, 2X per week > I had e-mailed Dr. Cecil about my situation and I was repeating what he had recommended for my tx ( I was told that he has used this approach with many of his slow responders )
If I remember correctly, he said 270 per week. The 180 on the regular shot night, then mid week 3-4 days later > add another shot, the additional 90. Split doses don't always mean double shots. But, I guess some have doubled their shots, although I can't even imagine that.
As for the added Riba, Jim is absolutely correct. If your friend takes additional Riba, he needs to be monitored very closely, with weekly CBC's and will more than likely need procrit. If he is a low weight, it might not be an option. The person that I know of that did the 7 Riba a day was over 200 lbs. She really struggled to stay on tx. She was stage 3/4 with bridging fibrosis. That is why she was so determined to stay on tx.
As some have suggested, if he does not clear by week 24, and he has minimal damage, he should stop and take the wait & watch approach.
Good Luck. I will pray that your friend will make the right decision and get to SVR forever. (((((( Sue ))))))
When I suggested that some have done the split doses of Peg, 2X per week > I had e-mailed Dr. Cecil about my situation and I was repeating what he had recommended for my tx ( I was told that he has used this approach with many of his slow responders )
If I remember correctly, he said 270 per week. The 180 on the regular shot night, then mid week 3-4 days later > add another shot, the additional 90. Split doses don't always mean double shots. But, I guess some have doubled their shots, although I can't even imagine that.
As for the added Riba, Jim is absolutely correct. If your friend takes additional Riba, he needs to be monitored very closely, with weekly CBC's and will more than likely need procrit. If he is a low weight, it might not be an option. The person that I know of that did the 7 Riba a day was over 200 lbs. She really struggled to stay on tx. She was stage 3/4 with bridging fibrosis. That is why she was so determined to stay on tx.
As some have suggested, if he does not clear by week 24, and he has minimal damage, he should stop and take the wait & watch approach.
Good Luck. I will pray that your friend will make the right decision and get to SVR forever. (((((( Sue ))))))
Jim is a hardazz who wants to kill all of these suckers off for good and then kill them again......and then kick them some more ;-)
And then just once again for the heck of it.
:)
And then just once again for the heck of it.
:)
Hey jim, glad your doing better. One thing i don't understand is you said you might up your riba after 42 weeks. You've been showing clear since 6 weeks right? So after 36 weeks of being clear what would be the reason for upping it now?
Good luck to ya....John
Dutch,
You know I'm a big riba fan but I just want to reinterate for your friend to be careful with upping the riba. Bill -- and hopefully he'll correct me if I'm wrong -- was taking 1600 or 1800 riba/day but he was also over 200 lbs.
Upping the riba is still an option but it has to be done right and monitored very carefully because in the end if you can't comply with treatment, all the riba and all the peg in the world won't help. That said, I may up my own riba once I hit the 42 week mark -- but at that point even if the additional sides throw me off treatment, I've still achieved my 42 weeks which has always been my bottom line. BTW I posted more regarding your friend in the thread just below this one. Hopefully his next PCR will be neg and all this will be academic.
-- Jim
You know I'm a big riba fan but I just want to reinterate for your friend to be careful with upping the riba. Bill -- and hopefully he'll correct me if I'm wrong -- was taking 1600 or 1800 riba/day but he was also over 200 lbs.
Upping the riba is still an option but it has to be done right and monitored very carefully because in the end if you can't comply with treatment, all the riba and all the peg in the world won't help. That said, I may up my own riba once I hit the 42 week mark -- but at that point even if the additional sides throw me off treatment, I've still achieved my 42 weeks which has always been my bottom line. BTW I posted more regarding your friend in the thread just below this one. Hopefully his next PCR will be neg and all this will be academic.
-- Jim
WHen I emailed him two yrs ago, and told him my vl was still detectable at wk 12, he made those suggestions. My drs would not go for that, or tx extension. I had to fight for tx extension for months until Dr B finally agreed to do it, asking me how long I wanted to go for. I did 72 wk full dose and two wks half peg w no riba. Still clear at 10 mo post tx PCR.
This guy that lurks here, Bill, had his riba upped for wks and he became undetectable. Your friend has various options. If you print the latest abstracts(that Precis url above) that might pertain to his case, he can exert a little more pressure on his dr, if he is not too flexible.
He has options, but he needs to act soon before the virus takes a better hold of him.
Good thing he has you!
This guy that lurks here, Bill, had his riba upped for wks and he became undetectable. Your friend has various options. If you print the latest abstracts(that Precis url above) that might pertain to his case, he can exert a little more pressure on his dr, if he is not too flexible.
He has options, but he needs to act soon before the virus takes a better hold of him.
Good thing he has you!
what a good friend you are!
Has anyone ever had experience with switching to a differnet interferon AS WELL AS doulbe dosing with the new interferon as a way to get the resistant virus to respond? I understand most who have double dosed are still using the drug they were on rather than switching to a different Interferon...but what about trying both the switch and the double dose? Any ideas on this? Has anyone done this?
thanks to you all, Scott
thanks to you all, Scott
Thank you for that wondeful advice as possible ways of helping with his VL. I will print out the suggested doses and see what his doctor thinks. I don't know what side of the fence the doctor is on ....if he is pro-active or not...or takes the cookie cutter approach but I will find out when I start making these suggestions to him. Cuteus, you mentioned these were Dr. Cecil's recommendations to you. Which recommendation did you choose in your journey? I appreciate you sharing this information. You have always been so helpful.
Thank you, Scott
Thank you, Scott
Thank you all for your responses. There is alot to consider and you all are making very good points and observations. I especially appreciate how quickly you all responded as my friend is in a panic and very upset. He thought he would do so well as his 4 week response was so encouraging like yours Sue...and to get this discouraging news has been such a blow. He has handled his tx perfectly so far...very very few sides:Procrit has held him steady.
Ina: Thanks for clarifying there need not be a wait to switch interferons. Great advice and a good approach which I will double check with his doctor.
Cougareyes and Bostongirl (Sue): You both mentioned the possiblilty of 2 doses of Peg a week and possibly upping the Riba. When you say 2 doses of Peg a week do you mean two shots a week with the same dose he is on twice a week which would actually double his weekly dose? Or when you said Sue 2X week, split doses do you mean reduced doses 2X week but the overall dose would be greater than what he is taking presently but not actually doubling his dose per week? If you could clarify I appreciate it. I want to understand what the potential protocol would be as a suggestion to his doctor to help him see other ways of dealing with this rather than just stopping tx.
Cougareyes...you mention double dosing the Peg....Which scenario that I wrote above is the interpretation of double dosing? This is excellent advice and encouraging as a strategy.
Suzieq: You are absolutely correct that he should get a biopsy so he knows how much damage he has to better make an informed decision about what his options are now. Thank you for putting that in focus. I will suggest that as well.
Thank you all for your input and as always it reminds us all we are not alone as we all face our challenges through this journey.
Scott
Ina: Thanks for clarifying there need not be a wait to switch interferons. Great advice and a good approach which I will double check with his doctor.
Cougareyes and Bostongirl (Sue): You both mentioned the possiblilty of 2 doses of Peg a week and possibly upping the Riba. When you say 2 doses of Peg a week do you mean two shots a week with the same dose he is on twice a week which would actually double his weekly dose? Or when you said Sue 2X week, split doses do you mean reduced doses 2X week but the overall dose would be greater than what he is taking presently but not actually doubling his dose per week? If you could clarify I appreciate it. I want to understand what the potential protocol would be as a suggestion to his doctor to help him see other ways of dealing with this rather than just stopping tx.
Cougareyes...you mention double dosing the Peg....Which scenario that I wrote above is the interpretation of double dosing? This is excellent advice and encouraging as a strategy.
Suzieq: You are absolutely correct that he should get a biopsy so he knows how much damage he has to better make an informed decision about what his options are now. Thank you for putting that in focus. I will suggest that as well.
Thank you all for your input and as always it reminds us all we are not alone as we all face our challenges through this journey.
Scott
one of Dr Cecil's recommendation to me, to clear the virus:
"Ask the docs if they will try 270 mcg of Pegasys per week for a couple of months, or 210 mcg of PegIntron per week for a couple of months or 15 mcg of Infergen every day for a couple of months."
I was on Pegasys/copegus. I am not sure if he meant changing my meds or upping the current meds
he also suggested
"Ask your doctor to try you on Infergen 15 mcg daily plus ribavirin. It is working on 20-25% of my Pegasys nonresponders."
Your friend might be on his way to become a non responder after initially being a
EVR. Here are some titles to look for at the conference:
"High Dose Consensus Interferon and Ribavarin Therapy is an Effective Treatment of Chronic Hepatitis C Infection in Patients who are Resistant to Peg-Interferon and Ribavarin-Preliminary SVR data"
Check out the abstracts on HCV tx at this site:
http://precis.preciscentral.com/utils/ip/FindPresentation.asp?EventId=c45147de
he needs to go longer than 48 wks after clearing the virus for a better shot at SVR.
"Ask the docs if they will try 270 mcg of Pegasys per week for a couple of months, or 210 mcg of PegIntron per week for a couple of months or 15 mcg of Infergen every day for a couple of months."
I was on Pegasys/copegus. I am not sure if he meant changing my meds or upping the current meds
he also suggested
"Ask your doctor to try you on Infergen 15 mcg daily plus ribavirin. It is working on 20-25% of my Pegasys nonresponders."
Your friend might be on his way to become a non responder after initially being a
EVR. Here are some titles to look for at the conference:
"High Dose Consensus Interferon and Ribavarin Therapy is an Effective Treatment of Chronic Hepatitis C Infection in Patients who are Resistant to Peg-Interferon and Ribavarin-Preliminary SVR data"
Check out the abstracts on HCV tx at this site:
http://precis.preciscentral.com/utils/ip/FindPresentation.asp?EventId=c45147de
he needs to go longer than 48 wks after clearing the virus for a better shot at SVR.
First off I think it comes down to how is he handleing tx, I could not up my dosage at all; I simply couldn't tolerate it. But if I were faced with more dire circumstances could or would I dig In (?).
Boston made a good point, double dosing the peg is become more of a tossed around idea; and I believe an excellent stategy. If he could do bi-weekly peg-intron(with an overall increased dosage), and up the riba by at least 200 ml/day. Beat the buggers down to undetectable as soon as possible.
And yes at that point, continue on for 36 more weeks after clearing; if his liver damage is more substantial some may even suggest 42 to 48 more weeks. He needs to decide how far and hard he's willing to go for SVR. Peace
Boston made a good point, double dosing the peg is become more of a tossed around idea; and I believe an excellent stategy. If he could do bi-weekly peg-intron(with an overall increased dosage), and up the riba by at least 200 ml/day. Beat the buggers down to undetectable as soon as possible.
And yes at that point, continue on for 36 more weeks after clearing; if his liver damage is more substantial some may even suggest 42 to 48 more weeks. He needs to decide how far and hard he's willing to go for SVR. Peace
I am 1b, stayed on treatment way to long,44 weeks. should have stopped at 12, atleast 24.He should have a biopsy to determine stage of liver damage to make an informed discion. I was a stage 2. If he has minimal damage I would stop and wait.I was just informed by DRs. that they are not having any better responses with changing to pegasys,Infergen ect. Because of my minimal liver damage, I am going to wait for something better to be developed. They are near. Keep close check on enzymes, all blood work, ect, I don't think he can really make an informed discion without the biopsy and knowing what stage his liver is in. Hope this helps some. The best to you and him.
Hi Scott;
I experienced something similar on my tx journey. I began at over 56 million. By week # 12 I had dropped to 18,000, but unfortunately I did not clear by week # 24 and developed some serious side effects. So I quit at week #24.
If it were me, I would ask to switch to another Peg or ask for higher doses of current Peg, possible 2x per week, split doses. This method has worked for some, but most doctors will not go that route. It's not standard protocol, so they usually rely on the basic studies and cookie cutter approach.
If your friend can tolerate higher doses of the Riba, that also might be another way to get him clear. I know one lady that did 7 Riba a day, but she really struggled and had procrit the whole time, even transfused towards the end of tx. She did get to SVR though and remains that way today. It is possible.
I was told that if I did not clear by week #24 then my chances were very, very slim. Good luck to both you & your friend. Hang in there, you are almost done! (((((( Sue ))))))))))
I experienced something similar on my tx journey. I began at over 56 million. By week # 12 I had dropped to 18,000, but unfortunately I did not clear by week # 24 and developed some serious side effects. So I quit at week #24.
If it were me, I would ask to switch to another Peg or ask for higher doses of current Peg, possible 2x per week, split doses. This method has worked for some, but most doctors will not go that route. It's not standard protocol, so they usually rely on the basic studies and cookie cutter approach.
If your friend can tolerate higher doses of the Riba, that also might be another way to get him clear. I know one lady that did 7 Riba a day, but she really struggled and had procrit the whole time, even transfused towards the end of tx. She did get to SVR though and remains that way today. It is possible.
I was told that if I did not clear by week #24 then my chances were very, very slim. Good luck to both you & your friend. Hang in there, you are almost done! (((((( Sue ))))))))))
Thank you both for your response. As always I appreciate those who take their precious time to answer.
Cougareyes: I agree that a protocol change is in order to continue to get that VL Down. Do you think changing the Interferon could be effective as this is what my first instincts tell me to suggest?
Ina: Remember you!!? Of Course! I live by your words of wisdom and think of you more than you would ever know! Your dietary advice saved my stomach from further chaos during this tx!...not to mention all the personal support during some of these rough times. Do you happen to know if one swithches to the other PEG during tx if they have to stop....wait some time....then start the other over as it is a new tx......OR....can one just continue tx and just change the PEG and then count down 36 weeks from the time of becoming undetectable?(I am an optimist as I have him becoming undetectable in my mind!)I do believe as you that the virus in his case became resistant to the PegIntron he is on and I believe changing to Pegsys may take the virus by surprise and knock it down. Your input is as always so appreciated Ina. I hope you are doing well.
I have not posted much lately as my sides were a bit daunting but I'm so please to see both your names appear. You both have been so helpful.
Best to you, Scott
Cougareyes: I agree that a protocol change is in order to continue to get that VL Down. Do you think changing the Interferon could be effective as this is what my first instincts tell me to suggest?
Ina: Remember you!!? Of Course! I live by your words of wisdom and think of you more than you would ever know! Your dietary advice saved my stomach from further chaos during this tx!...not to mention all the personal support during some of these rough times. Do you happen to know if one swithches to the other PEG during tx if they have to stop....wait some time....then start the other over as it is a new tx......OR....can one just continue tx and just change the PEG and then count down 36 weeks from the time of becoming undetectable?(I am an optimist as I have him becoming undetectable in my mind!)I do believe as you that the virus in his case became resistant to the PegIntron he is on and I believe changing to Pegsys may take the virus by surprise and knock it down. Your input is as always so appreciated Ina. I hope you are doing well.
I have not posted much lately as my sides were a bit daunting but I'm so please to see both your names appear. You both have been so helpful.
Best to you, Scott
Theoretically they look for the 2-log drop at 12 weeks, which he did achieve. Because most don't(I didn't) get a 4 week pcr, we really don't know where the vl would have been in comparison. I do believe he needs to make a tx protocol decision(upping meds, ?), I would definitely need to be undetectable very soon to continue tx. Personnally I don't believe much in long extended tx. Just one man's thoughts. Peace
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
