Aa
New Trial without the dreaded Interferon
I had a liver biopsy and was diganosed with stage 2/3. I believe Ive had hep c for approximately 35 years. I am now 63. I refuse to take that horrible Interferon which in my opinion should be taken off the market for its side effects. There is a new trial with drugs called ABT450, ABT, 267 and ABT 333. The side affects are not as severe as the previous regimine.
Has anyone here been on this or have any direct knowledge of the new trail. The trial may or may not include Ribavirin. It is for Geno Type 1 Chronic Hep. C.
nymillie
Has anyone here been on this or have any direct knowledge of the new trail. The trial may or may not include Ribavirin. It is for Geno Type 1 Chronic Hep. C.
nymillie
Millie, I tried to respond to the private message you sent me but was not able to do so. I tried but was not able to get a message through. The information you wanted is this: There are two trials of further interest and, in order to find out about them, you would have to contact Mt. Sinai in NYC or in the Bronx. If you go to clinicaltrials.gov and type in NCT 01359644 you should find a description which might be helpful. Another one which might be helpful is NCT 01435044. People have been getting very good results with this drug and NO I do not work for a drug company. It is just that it has helped me and many others I know. Some of the other drugs have had failures involving people on this forum so I would choose carefully. I discuss it further in my journal. I will not be following this thread much more but this is all I have to offer you right now. I wish you the best of luck.
Glad to hear you're looking into a clinical trial. Just so you know there was alot of talk on this forum about an article that had come out regarding the age of 65 and it's relationship to cirrhosis. Basically it said that most people who had HepC for over 20yrs reach cirrhosis at the age of 65. Check out the link below and it will lead to another link that has the article. Also, most of the people who have gone thru tx and had the fewest issues were healthy people who normally drink plenty of water daily. That's just something I've noticed and there's no science to it or anything, just a personal observation. Also, people who plan poorly seem to have more stress than they ever thought possible. That was me. Take a couple months minimum to learn all you can about HepC and clinical trials so there is no doubt in your mind that you've done your homework and are good to go. good luck
http://www.medhelp.org/posts/Hepatitis-C/is-it-possible-to-have-hep-c-but-still-no-cirrhosis-after-65/show/617241
http://www.medhelp.org/posts/Hepatitis-C/is-it-possible-to-have-hep-c-but-still-no-cirrhosis-after-65/show/617241
Upon futher reading of what they are going to give me it appears that I am only going to get ABT-450. The only allude that ABT-450 was given along with ritonavir (ABT450/r). Another 24 subjects received multiple doses of ABT-450/r in combination with pegylated-interferon and ribavirin (PegIFN+RBV) for up to 12 weeks. This study is on going.
The papers state that the a list of drugs cannot be taken while taking the above ABT-267, ABT-333 Phenobarbital (Luminal), Tegreto, St. John's Worth and several others. In addtion to RBV (Didanosine (Videx) Retrovir, Combivir an Trizivir.
So in the final analysis (I will confirm this on Thursday - stay tuned) I am getting the ABT-450 with pegylated-interferon - I'm assuming in pill form and ribavirin. To be determined upon confirmation.
What is missing from this report is that they mention the risk and discomforts but not the possible benefits. So I'm assuming that what is at the heart of a trial to determine the benefits.
After reading all of the post I am leaning towards taking the meds. As so many people mention that I may feel fine yet the incidious virus is doing its job. I was particularly impacted by the post of the person who actually got a transplant! That was quite humbling.
Thanks all for sharing.
Millie
The papers state that the a list of drugs cannot be taken while taking the above ABT-267, ABT-333 Phenobarbital (Luminal), Tegreto, St. John's Worth and several others. In addtion to RBV (Didanosine (Videx) Retrovir, Combivir an Trizivir.
So in the final analysis (I will confirm this on Thursday - stay tuned) I am getting the ABT-450 with pegylated-interferon - I'm assuming in pill form and ribavirin. To be determined upon confirmation.
What is missing from this report is that they mention the risk and discomforts but not the possible benefits. So I'm assuming that what is at the heart of a trial to determine the benefits.
After reading all of the post I am leaning towards taking the meds. As so many people mention that I may feel fine yet the incidious virus is doing its job. I was particularly impacted by the post of the person who actually got a transplant! That was quite humbling.
Thanks all for sharing.
Millie
Yes. Because we are so naive and scare - and my good friend is almost dying from it. He had to stop working - something I cannot afford to do or maybe will have no choice to do soon. Nothwithstanding, this forum is teaching me alot - and is educating me on "our" decease.
Thanks to all that have the experience and can now pass it forward.
Millie
Thanks to all that have the experience and can now pass it forward.
Millie
"so you all can understand how taking something that will make you severly ill is quite daunting"
One thing to remember is that we are all individuals and will all respond to the meds differently, not all become severly ill, some cruise right through without any problems at all. Predicting side effects of the meds is really not possible it's one of those things that you have to try to know fore sure.
One thing to remember is that we are all individuals and will all respond to the meds differently, not all become severly ill, some cruise right through without any problems at all. Predicting side effects of the meds is really not possible it's one of those things that you have to try to know fore sure.
I really, really appreciate your comments. I diligently taking your words and many posted here very seriously. I do wonder how much time I have before the stage 4. I suppose is anyone's guest and at 63 time is of the essence. I'm read about the side affect your mom got from the antibiotic - and on one fo these trials they mentioned that as a side affect! Is a sort of your damm if you do and your damm if you don't.
For now I am super healthy - and in a good place in my life - so you all can understand how taking something that will make you severly ill is quite daunting.
I will continue to explored all the options and hopefully make a wise decision. With the knowledgeble people in this forum I think I am on my way.
Millie
For now I am super healthy - and in a good place in my life - so you all can understand how taking something that will make you severly ill is quite daunting.
I will continue to explored all the options and hopefully make a wise decision. With the knowledgeble people in this forum I think I am on my way.
Millie
Yes. Thank you. I am not making a decision until I become more knowledgeble of the trials. This forum is unbelievable helpful.
Millie
Millie
In my humble opinion, given your age and your stage of liver disease, you should strongly consider treating now with one of the two triple therapies available (Incivek or Victrellis). The reason I say that is because there is no way to predict how much liver damage you will have or what other health conditions may come up in the next few years that may make treatment for Hep C more difficult or even impossible. When drugs are "in the pipeline" they often take much longer than early predictions would indicate to actually become approved and available for doctors to prescribe. Current alternative treatments, to my knowledge, are not effective. If you spend time researching them and using them, the very strong likelihood is that your liver damage will silently progress. The decision is yours, but I think that if it were me, I would treat with one of the triple therapies which have so greatly increased peoples' chances of SVR while my liver is still working and I'm healthy enough to go through treatment.
Advocate1955
Advocate1955
When I was diagnosed in late 2005 with not only hep C but decompensated cirrhosis, I could not have been more shocked. I thought I was healthy! My liver was so very diseased, and I had no idea.
Doing research on the internet, just scared me as I kept seeing things like ESLD (End Stage Liver Disease) and horror stories about interferon.
Determined not to do the horrible poison, interferon, I spent months looking for alternatives.
In time, this took me to an MD who was an herbalist and specialized in HCV.
She said she could help me with my symptoms and side effects of treatment but the only thing known at this time, that works against HCV is interferon.
So, I did the treatment, it was very difficult and I relapsed.
In 2009, I had a transplant.
The hep C resurfaced and I am now almost half way through SOC interferon treatment. Compared to last time, its not so bad at all.
Yes, there are side effects but the treatment is working.
I tell you my story because I believe the healthier your liver is, the easier it is to go through treatment and the more likely it will work.
This is something you should indeed think carefully before plunging in.
Unfortunately no one can tell you how quickly or slowly your fibrosis will progress.
If I had a chance to do one of the oral trials without interferon, I'd probably go for it.
But as others point out, there is much to consider.
Good luck,
OH
Doing research on the internet, just scared me as I kept seeing things like ESLD (End Stage Liver Disease) and horror stories about interferon.
Determined not to do the horrible poison, interferon, I spent months looking for alternatives.
In time, this took me to an MD who was an herbalist and specialized in HCV.
She said she could help me with my symptoms and side effects of treatment but the only thing known at this time, that works against HCV is interferon.
So, I did the treatment, it was very difficult and I relapsed.
In 2009, I had a transplant.
The hep C resurfaced and I am now almost half way through SOC interferon treatment. Compared to last time, its not so bad at all.
Yes, there are side effects but the treatment is working.
I tell you my story because I believe the healthier your liver is, the easier it is to go through treatment and the more likely it will work.
This is something you should indeed think carefully before plunging in.
Unfortunately no one can tell you how quickly or slowly your fibrosis will progress.
If I had a chance to do one of the oral trials without interferon, I'd probably go for it.
But as others point out, there is much to consider.
Good luck,
OH
This is Millie. I am here. I am reading all the post. They want me to make a decision by Thursday and this is making me feel a bit rush. I want to thank all of you who have responded. I will try to respond to each of you. I want to thank Odiloveslife for her insightful comment. Not my intention to upset anyone who is taking the Interferon. My friend is on it and is having a terrible time. Some people post that the alternative is worst - this is almost like not a choice.
Asked why I chose one trial over another. I didn't even know there were so many trials. All the post here are incredibly insightful - which lead me to believe that I cannot sign those papers this week to be put on the trial until I dig further.
What I really like to do - is explore alternative medicine. I feel so healthy right now. I am full of energy and I am happy. Yet this virus is in my liver supposely eating me away. Stage 2/3. It took me approximately 35 years to get to this - can I go on another how long before it progresses further? Should I make myself severly sick now when I don't have any other condition? Should I subject myself to aches and pains and flus and rashes and possibly have to stop working (I cannot afford that) when at this moment I am at my best? Wow - what a choice - this is a truly difficult decision which I don't feel I am ready to make - at least not in 5 days.
Thank you all who posted I will stay tuned and give back more information after I look at those dreaded forms they gave me to sign my life away. lol.
Asked why I chose one trial over another. I didn't even know there were so many trials. All the post here are incredibly insightful - which lead me to believe that I cannot sign those papers this week to be put on the trial until I dig further.
What I really like to do - is explore alternative medicine. I feel so healthy right now. I am full of energy and I am happy. Yet this virus is in my liver supposely eating me away. Stage 2/3. It took me approximately 35 years to get to this - can I go on another how long before it progresses further? Should I make myself severly sick now when I don't have any other condition? Should I subject myself to aches and pains and flus and rashes and possibly have to stop working (I cannot afford that) when at this moment I am at my best? Wow - what a choice - this is a truly difficult decision which I don't feel I am ready to make - at least not in 5 days.
Thank you all who posted I will stay tuned and give back more information after I look at those dreaded forms they gave me to sign my life away. lol.
Concerning disclosing information; people in trials often agree to not unblind a trial with certain information. The fact that proof cannot be provided does not discredit or disprove, it just means that you have to take it w/ a grain of salt. Situations as such are anecdotal anyway. They don't become proof until trials end and significant numbers are provided. On boards, we do often see little snippets of information early that later are proven to have some validity.
Speaking of Abbott..... I did mention the trial, and I recommended the riba arm. Until it is proven to be not needed, it is probably better to over-dose than under-dose.
One other thing about the earlier Abbott trial, it is a 12 week course of treatment. I think that says something about it's efficacy. The original one was quite small. They are trying a few variations and in greater numbers to prove it's validity and better assess safety. It is hard to say whether 24 weeks of 2 drugs is better than 12 weeks of 4 drugs. They could be equal, better, worse. Trials may shed some light on this. I don't disagree that 2 is inherently better than 4 drugs, just saying it depends on *which* drugs.
http://www.natap.org/2011/HCV/102511_02.htm
willy
best,
Willy
Speaking of Abbott..... I did mention the trial, and I recommended the riba arm. Until it is proven to be not needed, it is probably better to over-dose than under-dose.
One other thing about the earlier Abbott trial, it is a 12 week course of treatment. I think that says something about it's efficacy. The original one was quite small. They are trying a few variations and in greater numbers to prove it's validity and better assess safety. It is hard to say whether 24 weeks of 2 drugs is better than 12 weeks of 4 drugs. They could be equal, better, worse. Trials may shed some light on this. I don't disagree that 2 is inherently better than 4 drugs, just saying it depends on *which* drugs.
http://www.natap.org/2011/HCV/102511_02.htm
willy
best,
Willy
Is this forum not to share thoughts ,ideas,opinions and facts for everyones benefit?
Are the folks currently in Abbott trials are not included? .
I would hope so but so far you have been the only poster (including myself) that has actually posted any data concerning the OP's original question cudo's to you for focusing on the question and not the title.
Are the folks currently in Abbott trials are not included? .
I would hope so but so far you have been the only poster (including myself) that has actually posted any data concerning the OP's original question cudo's to you for focusing on the question and not the title.
There are too many drugs in the Abbott cocktail. It suggests that the drugs are too weak. I cannot say more about it because the information was given in confidence. .
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Is this forum not to share thoughts ,ideas,opinions and facts for everyones benefit?
Are the folks currently in Abbott trials are not included?
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Is this forum not to share thoughts ,ideas,opinions and facts for everyones benefit?
Are the folks currently in Abbott trials are not included?
We all hope that several of the oral trts in trials without the use of interferon are successful. But until we see published data showing the SVR rates after trial completion, it just remains a hope and a promise. It doesn't matter if you were UND at 2 weeks if you relapse a month after EOT. As you well know, it's all about SVR.
I'd imagine this isn't the first oral or PI that looked extremely promising, but got yanked at the 11th hour due to some side effects that presented themselves at a later date. I don't want to sound pessimistic and certainly wouldn't take offense if this was purely informational. But your aggressive promotion of the orals in almost all your posts and the strong reference to the negative effects of interferon that many don't experience gets tiring. It was only five months ago you were seriously considering peg-interferon lambda due to its reduced sx.
Again, posts linking SVR rates would add some credibility to your promotion. I looked in your many journal entries for these links, but my eyes quickly glazed over after seeing the amount of information about the Gilead/Pharmasset financial market. I clearly understand your interest and investment to see this oral succeed. Although promising, the jury is still out. Let's hope for the best.
I'd imagine this isn't the first oral or PI that looked extremely promising, but got yanked at the 11th hour due to some side effects that presented themselves at a later date. I don't want to sound pessimistic and certainly wouldn't take offense if this was purely informational. But your aggressive promotion of the orals in almost all your posts and the strong reference to the negative effects of interferon that many don't experience gets tiring. It was only five months ago you were seriously considering peg-interferon lambda due to its reduced sx.
Again, posts linking SVR rates would add some credibility to your promotion. I looked in your many journal entries for these links, but my eyes quickly glazed over after seeing the amount of information about the Gilead/Pharmasset financial market. I clearly understand your interest and investment to see this oral succeed. Although promising, the jury is still out. Let's hope for the best.
Oh one last thing. Hmm. Perhaps the post title may have been a twee bit insensitive toward people who are currently treating?!? Some people have little choice but use what is available now. Waiting a year or two or getting into a trial isn't an option for everyone. Not sure if you realize this, but the drugs induce quite severe depression in a lot of people. Things which roll like water off a duck's back normally can reduce a person to tears in two flicks.
Anyway. Welcome to our roasty toasty forum :)
Anyway. Welcome to our roasty toasty forum :)
Hi Millie. I haven't heard about the trial you mentioned or the drugs. I have just seen just that there are reports of good results with a 12-week therapy using an Interferon-free four drug combination. Must be promising as it apparently caused a blip in the Pharmasset share price. Please do let us know what you find out and if you join the trial how it goes. There is so much good news out there now for Interferon free treatment.
If it was me, I would still lean towards choosing the Pharmasset drugs as they have achieved stellar results with several different two-drug combinations including PSI-7977. To my mind more drugs = more potential for SX and possibly that the drugs are not quite as effective. Looks like Abbott are not quite as far along in the trials though. They might not have had the chance to test mono therapies and combos with fewer drugs yet.
There are a number of people on the forums who are participating in trials including PSI-7977. Almost no side effects to date. All of them cleared the virus within a few weeks and there have been NO breakthroughs.
This is all very promising. If Abbot has something really good to offer the competition might speed up the development process.
To CuriousLady: Thank you for letting us know about your trial here and elsewhere. I really appreciate that you have taken the time to put the information out there. It offers great hope to people who cannot treat with IFN or who don't want to. I am one of those people and it is immensely comforting to discover that I might be able to have a cure without the risks and financial hardship that SOC or triple would impose upon me.
I have read many of your posts and I am sure that you, just like most of us here want to support those who need to treat now with IFN. I know you post in the spirit of helping others. Knowing that that are much better alternatives in the pipeline does not prevent seriously ill HCV sufferers from undertaking treatment at all. It might just save some young person who could afford to wait from a life of autoimmune related dysfunction, or blindness, or suicide though.
So thank you to Millie as well for asking your question.
All good.
If it was me, I would still lean towards choosing the Pharmasset drugs as they have achieved stellar results with several different two-drug combinations including PSI-7977. To my mind more drugs = more potential for SX and possibly that the drugs are not quite as effective. Looks like Abbott are not quite as far along in the trials though. They might not have had the chance to test mono therapies and combos with fewer drugs yet.
There are a number of people on the forums who are participating in trials including PSI-7977. Almost no side effects to date. All of them cleared the virus within a few weeks and there have been NO breakthroughs.
This is all very promising. If Abbot has something really good to offer the competition might speed up the development process.
To CuriousLady: Thank you for letting us know about your trial here and elsewhere. I really appreciate that you have taken the time to put the information out there. It offers great hope to people who cannot treat with IFN or who don't want to. I am one of those people and it is immensely comforting to discover that I might be able to have a cure without the risks and financial hardship that SOC or triple would impose upon me.
I have read many of your posts and I am sure that you, just like most of us here want to support those who need to treat now with IFN. I know you post in the spirit of helping others. Knowing that that are much better alternatives in the pipeline does not prevent seriously ill HCV sufferers from undertaking treatment at all. It might just save some young person who could afford to wait from a life of autoimmune related dysfunction, or blindness, or suicide though.
So thank you to Millie as well for asking your question.
All good.
I am just sharing what I have observed and what I pick up listening carefully to researchrs. This is an example of what I have said in previous posts. One company keeps adding more and more drugs to their cocktail. Another company begins to have less and less in their cocktail as all the trials move along through their phases. What does it all mean? For people contemplating trials (both you and I have already made our choices Keith) it might be important to wonder about and ask some questions at trial sites.
There are too many drugs in the Abbott cocktail. It suggests that the drugs are too weak. I cannot say more about it because the information was given in confidence. .
Nothing like good old concrete confident data !!!
Nothing like good old concrete confident data !!!
. . . and I responded. There are too many drugs in the Abbott cocktail. It suggests that the drugs are too weak. I cannot say more about it because the information was given in confidence.
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It is very true that it is a tough treatment. It is true it is not 100% safe; there are risks. I've got several friends right now that have cancer that would gladly trade the risks that we have versus the outlook for a cure which they have.
As is sits..... there is no cure for HIV, modern medicine can only keep trying new drugs to fight it. One day there will be a cure for HIV; but it is not here yet.
Hepatitis C....... IS a virus for which there is a CURE. The toughest to treat genotype 1 has HAD about a 40-50% cure rate with about one year of treatment. The NEW approved treatments bring that into the 70-80% range and i don't believe that they have been tweaked out to net us all that they can. We are tremendously lucky to have the treatments that we do have.
If you were take interferon out of the current mix of therapy it would virtually cease to work. My point is that we need this drug right now. It isn't perfect. It isn't easy, but without it there is virtually no cure.....today.
We are all excited about the new drugs, the new possibilities. By the way...... the abbot trial you speak about...... I first heard about the earlier small trial 1/2 year ago. If I was given a choice...... I'd pray for the arm with the riba.
A while ago I declined a Vertex quad therapy trial. Even with 2 cutting edge PI's the arms without IFN and RBV were stopped/closed; people in the no SOC arms experienced viral breakthrough. So...... you can see....you can understand what can happen when insufficient efficacy hits the virus; failure, or an unacceptable amount of failure.
Yes...... the current drugs are tough and unpalatable..... but they DO cure people.
best,
Willy