Aa
double dosing
whats the longest any one has gone on double dose INF? how bad was it? could you even get a doctor to let you double dose for 4 to 6 months? as a 1a, late responder cirrhosis, i am not going the 54 more weeks to get 72. im going to bail out. i want to continue until my enzymes are better, but not for too long. i figured it would be worth double dosing starting now for 4 more months ,giving a total of 36. this would only give me 15 weeks of UND.
i figured since im already 5 months in, this strategy would at least give me a small chance for an accidental SVR. i know the chances are slim but as for as i am concerned all is lost for this round, and SOC in general. for me anyway. what do yall think. i do beleive that late double dosing could be effective as you are only fighting the last 5000- 20000 viruses (UND down to 5). i beleive that 3 cardio sessions a day (at some min level) will supply exponential quantities of oxygenated interferon rich bood to all the crevases where the last viremia is hiding. im sure this is probably not how it really works but it sounds good, doesnt it? help me out here. my doc probably wont do this for me anyway. i need one in houston area, anyone got a name for a radical strategy hep doc. one last idea, it seems to me that if you feather off at the end of treatment instead of (cold turkey) you could enable your own immune system to make a slower more effective transition to fighing the virus all own its own? any research on this?
i figured since im already 5 months in, this strategy would at least give me a small chance for an accidental SVR. i know the chances are slim but as for as i am concerned all is lost for this round, and SOC in general. for me anyway. what do yall think. i do beleive that late double dosing could be effective as you are only fighting the last 5000- 20000 viruses (UND down to 5). i beleive that 3 cardio sessions a day (at some min level) will supply exponential quantities of oxygenated interferon rich bood to all the crevases where the last viremia is hiding. im sure this is probably not how it really works but it sounds good, doesnt it? help me out here. my doc probably wont do this for me anyway. i need one in houston area, anyone got a name for a radical strategy hep doc. one last idea, it seems to me that if you feather off at the end of treatment instead of (cold turkey) you could enable your own immune system to make a slower more effective transition to fighing the virus all own its own? any research on this?
I'm unclear if "Cruel" had a two-log drop by week 12 or not.
Assuming he didn't have a two-log drop by week 12, he might therefore still be considered a candidate for Prove III. I say this because under some guidelines, treatment is stopped at week 12 if there isn't a two-log drop and the patient is considered a non-responder. Certainly worth a call to a trial coordinator to double check on how Cruel's situation matches up to the Vertex trial enrollment guidelines.
-- Jim
Assuming he didn't have a two-log drop by week 12, he might therefore still be considered a candidate for Prove III. I say this because under some guidelines, treatment is stopped at week 12 if there isn't a two-log drop and the patient is considered a non-responder. Certainly worth a call to a trial coordinator to double check on how Cruel's situation matches up to the Vertex trial enrollment guidelines.
-- Jim
What? are you like nuts? the reason it takes 24,48,72 months is to kill it slowly not all at once and possibly yourself in the process. Ok, so what if some doc was crazy enough to go along with that what other organs would get sick from the over kill and would the blood test accurate in the end.
jasper
jasper
The last idea is very plausible and make much more sense and have thought of it as well. After being on these drugs for a duration of time the body is at a constant level and it would seem to me that if at the end of treatment you stop dead the body goes through the with draws as with any other addiction. But I am not at that stage yet. Good Thought tho. Sorry for the fast negitive reaction 4 am here.
jasper
jasper
The best thought you had is finding an experienced doctor and get opinions based on facts and not guesses or wishful thinking. I'm not sure why getting getting enzymes better is a goal. What will that do for you? Let's say you get an LFT and your enzymenes happen to be in range, than what?. What about three weeks later when they might be out of range? For many people, me included elevated enzymes are a by-product of the treatment meds. Lets say that you are one of those people and that your intention is to get better enzymes, I'm not sure that increaseing dose will get you there. Getting the virus maybe, but enzymes?. 'Oxygenated interferon rich bood' - what the hell is that? Find a doctor.
I do not really think it's the amount of medicine it's more the effectiveness of getting them all over time and triggering your own immune system to work to do this.
Rather than double dosing and taking such extreme chances with the sides (regular dosing of interferon killed my thyroid off for good on it's own) why not just stop and try a stronger/different interferon such as Infergen. It has very good results for non-responders and if I myself have not achieved SVR...I'm going to try the daily shot. Having a daily shot instead of weekly shot seems much stronger than trying to take a huge portion of an extended time period med and hoping it lasts longer.
Do you know what I mean?
Good luck either way but remember - the real problems with interferon are BAD and can last a lifetime. Too much of the stuff can really hurt you in the long term.
Rather than double dosing and taking such extreme chances with the sides (regular dosing of interferon killed my thyroid off for good on it's own) why not just stop and try a stronger/different interferon such as Infergen. It has very good results for non-responders and if I myself have not achieved SVR...I'm going to try the daily shot. Having a daily shot instead of weekly shot seems much stronger than trying to take a huge portion of an extended time period med and hoping it lasts longer.
Do you know what I mean?
Good luck either way but remember - the real problems with interferon are BAD and can last a lifetime. Too much of the stuff can really hurt you in the long term.
NYGirl has a good point in cutting your losses and changing treatments. However, my preference would be looking into Telaprevir's Prove III trial for prior non-responders.
But to your question, I don't remember hearing of anyone double-dosing Peg so late in treatment for such a long period of time. I have heard, however, of people upping their ribavirin.
Since your're a stage 4, and obviously willing to take more risks with treatment, you might want to contact the Sweedish researchers -- try Googling "Lindahl ribavirin " for contact information -- and ask if they've had any success with high dose ribavirin (HDR) late in treatment in cases such as yours. If so, maybe they can then either refer you to a doctor in the U.S. they know, or otherwise help coordinate a plan of action. Just keep in mind that HDR is quite risky, side effects will no doubt increase, and the risk of having to stop treatment from drug toxicity goes up. There is also no way I'm aware of in this country to accurately monitor serum riba levels as there is in Sweeden. For this reason, at one point early-on in treatment I had planned on traveling to Sweeden for serum riba testing , however that became academic when I ended up in the ER. My body just couldn't tolerate the higher ribavirin levels so I gave up on that approach.
Whatever you do, I urge that you find a doctor who will supervise and monitor your progress and side effects. These are very powerful drugs and simply upping them on your own can be very risky. All said, if you haven't made/don't make non-detectible by week 24, my personal preference would be stopping treatment and trying to enroll in Prove III.
All the best,
-- Jim
But to your question, I don't remember hearing of anyone double-dosing Peg so late in treatment for such a long period of time. I have heard, however, of people upping their ribavirin.
Since your're a stage 4, and obviously willing to take more risks with treatment, you might want to contact the Sweedish researchers -- try Googling "Lindahl ribavirin " for contact information -- and ask if they've had any success with high dose ribavirin (HDR) late in treatment in cases such as yours. If so, maybe they can then either refer you to a doctor in the U.S. they know, or otherwise help coordinate a plan of action. Just keep in mind that HDR is quite risky, side effects will no doubt increase, and the risk of having to stop treatment from drug toxicity goes up. There is also no way I'm aware of in this country to accurately monitor serum riba levels as there is in Sweeden. For this reason, at one point early-on in treatment I had planned on traveling to Sweeden for serum riba testing , however that became academic when I ended up in the ER. My body just couldn't tolerate the higher ribavirin levels so I gave up on that approach.
Whatever you do, I urge that you find a doctor who will supervise and monitor your progress and side effects. These are very powerful drugs and simply upping them on your own can be very risky. All said, if you haven't made/don't make non-detectible by week 24, my personal preference would be stopping treatment and trying to enroll in Prove III.
All the best,
-- Jim
NYGirl has a good point in cutting your losses and changing treatments. However, my preference would be looking into Telaprevir's Prove III trial for prior non-responders.
But to your question, I don't remember hearing of anyone double-dosing Peg so late in treatment for such a long period of time. I have heard, however, of people upping their ribavirin.
Since your're a stage 4, and obviously willing to take more risks with treatment, you might want to contact the Sweedish researchers -- try Googling "Lindahl ribavirin " for contact information -- and ask if they've had any success with high dose ribavirin (HDR) late in treatment in cases such as yours. If so, maybe they can then either refer you to a doctor in the U.S. they know, or otherwise help coordinate a plan of action. Just keep in mind that HDR is quite risky, side effects will no doubt increase, and the risk of having to stop treatment from drug toxicity goes up. There is also no way I'm aware of in this country to accurately monitor serum riba levels as there is in Sweeden. For this reason, at one point early-on in treatment I had planned on traveling to Sweeden for serum riba testing , however that became academic when I ended up in the ER. My body just couldn't tolerate the higher ribavirin levels so I gave up on that approach.
Whatever you do, I urge that you find a doctor who will supervise and monitor your progress and side effects. These are very powerful drugs and simply upping them on your own can be very risky. All said, if you haven't made/don't make non-detectible by week 24, my personal preference would be stopping treatment and trying to enroll in Prove III.
All the best,
-- Jim
But to your question, I don't remember hearing of anyone double-dosing Peg so late in treatment for such a long period of time. I have heard, however, of people upping their ribavirin.
Since your're a stage 4, and obviously willing to take more risks with treatment, you might want to contact the Sweedish researchers -- try Googling "Lindahl ribavirin " for contact information -- and ask if they've had any success with high dose ribavirin (HDR) late in treatment in cases such as yours. If so, maybe they can then either refer you to a doctor in the U.S. they know, or otherwise help coordinate a plan of action. Just keep in mind that HDR is quite risky, side effects will no doubt increase, and the risk of having to stop treatment from drug toxicity goes up. There is also no way I'm aware of in this country to accurately monitor serum riba levels as there is in Sweeden. For this reason, at one point early-on in treatment I had planned on traveling to Sweeden for serum riba testing , however that became academic when I ended up in the ER. My body just couldn't tolerate the higher ribavirin levels so I gave up on that approach.
Whatever you do, I urge that you find a doctor who will supervise and monitor your progress and side effects. These are very powerful drugs and simply upping them on your own can be very risky. All said, if you haven't made/don't make non-detectible by week 24, my personal preference would be stopping treatment and trying to enroll in Prove III.
All the best,
-- Jim
I am not understanding your reasoning to bail after 36 weeks and not doing the 72 weeks. Are the side effects too tough? If you think these side effects are too hard, what do you think ESLD is like? What do you think a transplant is like? I am just not understanding your desire to stop treatment after 36.
If I am understanding this, you want to put all your hopes in the interferon knocking the virus out and that is that. As a responder relaprse I will tell you what my new hepatatolgist told me last week when I asked her about double dosing. She said, the interferon didn't let you down, the ribavirin did. She said, you are a responder. The interferon did it's job. It is the ribavivin that helps more people who do respond achieve SVR.
The fact is they do know interferon by itself didn't work effectively. The addition of ribavivin in the mid 90s increased SVR. They still can't tell you exactly what it does, but id does help keeping the virus from replicating.
If my math is right, you cleared about week 21. Perhaps you would benefit from an increased dose of ribavivin as Jim suggests, but I certainly think you need to go the full 72.
frijole
If I am understanding this, you want to put all your hopes in the interferon knocking the virus out and that is that. As a responder relaprse I will tell you what my new hepatatolgist told me last week when I asked her about double dosing. She said, the interferon didn't let you down, the ribavirin did. She said, you are a responder. The interferon did it's job. It is the ribavivin that helps more people who do respond achieve SVR.
The fact is they do know interferon by itself didn't work effectively. The addition of ribavivin in the mid 90s increased SVR. They still can't tell you exactly what it does, but id does help keeping the virus from replicating.
If my math is right, you cleared about week 21. Perhaps you would benefit from an increased dose of ribavivin as Jim suggests, but I certainly think you need to go the full 72.
frijole
The grass is always greener. I too would have liked to hop on the Vertex trial train. But it was full and it is probably full where you are too.
Tallahasse made a good point. Right now you are a responder. You do not qualify for the Vertex trial which is for relapsers and non-responders. You have to at least finish your SOC - standard of care, being 48 weeks - before you are anything.
Cruel - about your question on the 72 weeks after you have -- if you have- a positive read 3 weeks post. ---- The clock starts ticking all over again. You start at week 1 again. That's the way it works. As for how long it takes for the virus to get back to where it was, well, remember, those little babies only live a few hours but the replication rate is about 2,000,000 a day!. Some say you can get right back on treatment before the virus reaches pre treatment levels. -- Kalio did that. I was back at pretreament levels in 6 months.
Keep on trucking, Cruel. It is the best thing to do presently.
frijole
Tallahasse made a good point. Right now you are a responder. You do not qualify for the Vertex trial which is for relapsers and non-responders. You have to at least finish your SOC - standard of care, being 48 weeks - before you are anything.
Cruel - about your question on the 72 weeks after you have -- if you have- a positive read 3 weeks post. ---- The clock starts ticking all over again. You start at week 1 again. That's the way it works. As for how long it takes for the virus to get back to where it was, well, remember, those little babies only live a few hours but the replication rate is about 2,000,000 a day!. Some say you can get right back on treatment before the virus reaches pre treatment levels. -- Kalio did that. I was back at pretreament levels in 6 months.
Keep on trucking, Cruel. It is the best thing to do presently.
frijole
you would stick it out for 72 when vertex offers a better chance and maybe less time? i cant justify 72 with my numbers. if vertex wasnt truly available in the next trial in january i would stay in.
There's another fact you should consider. VX is in trial. The ability to get into a trial, even if the timing was right, is not a sure thing. There are many people here who have expressed interest in a trial who are far down the list or have not met the criteria for one reason or another. In the world of trials, many call but few are chosen.
The first time I treated, with non-peg IFN and Riba, I managed to find myself with dual insurance coverage. I changed jobs right as I started treating, and payed for COBRA at old job and used the insurance at the new job.
So...I doubled up on the IFN. The normal dosing was 180ug, SQ, Q48h, and took a shot every day, and rested on Sundays.
It was rough, but I managed, to continue working. My LFTs normalized, but I was detectable at 24 weeks, so I stopped.
So...I doubled up on the IFN. The normal dosing was 180ug, SQ, Q48h, and took a shot every day, and rested on Sundays.
It was rough, but I managed, to continue working. My LFTs normalized, but I was detectable at 24 weeks, so I stopped.
i don't know why your giving up already. while you may not be a rapid responder you are responding , right? you should at least stick out the 48 weeks. have you asked your Dr. what he thinks. BTW- i'm not a rapid responder either (55 at 12 weeks). i am seeing my Dr. today, i'll let you know what he says. good luck, and hang in there.
i don't know why your giving up already. while you may not be a rapid responder you are responding , right? you should at least stick out the 48 weeks. have you asked your Dr. what he thinks. BTW- i'm not a rapid responder either (55 at 12 weeks). i am seeing my Dr. today, i'll let you know what he says. good luck, and hang in there.
You will not be qualified for any trial as a non-responder or as treatment naive. Obviously, you ARE responder and be happy about it! I had 48 weeks of treatment w/ riba and had only 1.5 log reduction at the end of 48 weeks (in 1995-96).
Everybody gave you wonderful advice - please read it and don't ignore it! You MUST extend to 72 weeks. Period.
Good luck and all the best!
Everybody gave you wonderful advice - please read it and don't ignore it! You MUST extend to 72 weeks. Period.
Good luck and all the best!
sage advice ladies and gentlemen, thanks. youre right, my whole goal here is to limit exposure. i should totally forget this round and start enrolling in vertex. (i wish yall had never told those stories of accidental SVR, ive been tantalized ever since) one last question, lets say someone makes 48 weeks with 36 UND and they relapse 3 weeks post, does anyone like that jump back on board and stretch to 72? or does the recurring viremia ruin all previous progress? to nygirl and jim, are yall still having a lot of fatigue? seeing any improvement in generally feeling back to normal? sides are only half what they used to be for me.
i like some of your ideas and the way you think "out of the box". i think if you try a strategy like the double dosing you are going to have to do it on your own. i do not think a doc will go along with it. the problem is how to get the drugs to double dose. you could say one of the boxes got damaged but you could only get away with that one or two times. good luck and keep up the good work with the tx of your body.
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