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

[Willy50]

Millie if you could have eliminated interferon a decade ago because of the side effects it would have resulted in many many deaths.  We still do not have a stand alone therapy that has been proven to work or proven to be safe that can cure people w/ HCV.
    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

[Mary4now]

oh, I dont know, but I would be leary of anything without Riba..........and the interferon may be nasty, but if it works, the option is even nastier.

[curiouslady1]

There are a number of trials going on with and without Ribaviron now.  If you can find out how strong or weak the drugs are that might be a good thing.  What are their resistance profiles?  I am curious as to why the Abbott trial attracted you?  It is good to know why you would pick Abbott's drugs over Pharmassets or Gilead Science?  They are not all the same. As long as you know why you selected it and feel comfortable with it, that is what matters.  But try to find as much data as possible.  

[curiouslady1]

Millie I sent you a private message regarding your post.  Your messages can be accessed by going to the top right of this page.

[fretboard]

Where are you at as far as clinical trials go, did you actually go to the clinical trial site in your area or have you just been reading off the internet?  I just glanced at the trials quickly but what I gathered is some or at least one was given with interferon.  If you haven't done so already find a clinical trial site in your area and go there or at least give them a call. good luck

[willbb]

Abbott has had some excellent results in early  trials with their combined protease and polymerase Inhibitors,and I believe this combo has been fast tracked by the FDA.
This was a thread about early results (very encouaging,albeit small study )

http://www.medhelp.org/posts/Hepatitis-C/Very-early--Small-Study-but-Encouraging-Data/show/1615338?personal_page_id=1837989

Entering a  trial has many pros and cons  and always a good idea to research as much as you can before making any desicions on how or with what to treat.

Good luck..
Willl

[nygirl7]

Interferon is not horrible it saved many of our lives.  And remember while trials look promising they have oftentimes many limiations and often times do not pan out in the end.  It took from 2005 when I joined to 2011 for Incivek to get released by the FDA.  A lot of people did not have that many years to wait - and we watched many promising drugs fall by the wayside.

I'd be not so quick to call interferon horrible when you had advanced liver disease and need something that is PROVEN to work.

I guess it's a matter of how much you want to be cured over how few side effects you are willing to try and have.

Best of luck to you.

[can-do-man]

" I refuse to take that horrible Interferon which in my opinion should be taken off the market for its side effects."

YIKES, many of us still alive thanks to that "nasty stuff"

[nygirl7]

Personally I find many antibiotics to be nasty stuff since one of them almost killed my mother with Stephens Johnson Syndrome but yeah when I need to take one to stay alive I do.

You are stage 2/3 and a jump and a skip from being a 3 or a 4 as oftentimes the disease progresses after we are of a certain age and a certain degree of liver damage. Be careful not to jump to a conclusion based on a prejudice your life may depend on it someday soon.

[hrsepwrguy]

IMO the dreaded interferon is probally what is saving my skinny little late stage 3 butt, I had a good response to a DAA but not stellar and I believe the interferon is what got the rest of the way to an UND status at wk 12. Again IMO waiting to develope cirrhosis seemed much worse than taking a chance with interferon. Here is a good link on fibrosis progression you may want to look at.

http://www.hawaii.edu/hivandaids/Fibrosis%20And%20Disease%20Progression%20In%20Hepatitis%20C.pdf

[flcyclist]

Best of luck to you in your trial.  Most here are using the "dreaded" interferon and many have successfully trt with it in the past.  Seems like you've already come to the conclusion that due to the side effects, you won't ever consider it in your trt regimine.  I'm not interested in trying to change your mind, but curious what source of information led you to this conclusion.

[mikesimon]

Has anyone noticed that a lot of the intense interferon haters are brand new or relatively new members?
Not hatin' - just sayin'.

[nygirl7]

Maybe this new breed is just like me, they know everything there is to know in life or they have read the forum for years before establishing the 'interferon is of the Dehvahl' mantra?  Always a very odd first choice of posts isn't it considering most people say "ok this is what i need to do to beat this thing".

[Willy50]

There is mostly only preliminary data on the success rates in treatments which eliminate interferon.  Many of the trials which have been performed which excluded riba ended in very lackluster results and were considered failures.

Therefore...... until such a time that either riba or IFN are conclusively shown to no longer be needed people are going to need to embrace either or both of these drugs to improve their chances of success.

It is easy to see response rates in trials without one or both drugs, but the PROOF will be in SVR rates, and in trials with meaningful numbers.  We have seen a few trials which looked promising, but ended in viral breakthrough or relapse for some people.

Keep in mind also, that while there are threads in this forum which convey possible issues, side effects or even dangers of these SOC drugs, these remain in the minority of people who treat.  For the moment and in the near future these drugs will remain a vital part of treatment and cure of HCV.  The future is not here yet.  : )

best,
Willy

[mikesimon]

Yes and because the future isn't here yet we really don't know what long term side effects might be associated with these protease inhibitors. While we can look at HIV patients and PI use there is no guarantee that HCV patients will react the same. Don't get me wrong - I love the looks of these new drugs and especially the polymerase inhibitors. I am hopeful they will change the landscape of HCV treatment for the better. But, we cannot simply continue to demonize interferon because some people are treating and some people will have no choice but to treat with SOC. We run the risk of significantly increasing anxiety in those patients treating and discouraging people who should treat to opt to wait and that might be the wrong decision.

A little balance is what I'm looking for.

Mike

[Willy50]

Millie if you could have eliminated interferon a decade ago because of the side effects it would have resulted in many many deaths.  We still do not have a stand alone therapy that has been proven to work or proven to be safe that can cure people w/ HCV.
    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

[curiouslady1]

There is mostly only preliminary data on the success rates in treatments which eliminate interferon.  Many of the trials which have been performed which excluded riba ended in very lackluster results and were considered failures.
****
Can you please provide examples of what you are referring to here?  In fact, there are a number of trials which are ongoing and have demonstrated early success.  I am not sure what you mean by many?  Not sure what you mean by failures?  Would you please post the links to data re "failures" and who considers them failures?  Rather than go into it here, I would point you or anyone interested to my journals where I have a number of links regarding some oral HepC drugs and interferon free trials that might be helpful for people who are seriously interested in finding out more about this.  

[flcyclist]

Do you have any references to SVR rates of the oral Hep C drugs you continue to mention?  If there are SVR %'s you can reference, it would add some credibility to your agenda.  I honestly haven't looked into the orals and would be interested to hear if this data exists.  

[Willy50]

I can name a few, but first...... understand that I am distinguishing trials which are COMPLETED.  We have results for those; we DON'T have results for trials that are in progress; fair enough?
===================
Vertex;
Prove 2 and Prove 3 had no riba arms
Currently Vertex is running a trial w/ VX-222 & telaprevir as quad therapy w/ SOC and 2 other arms w/o IFN and RBV; only the 2 PI's  The arms without SOC were closed due to viral breakthrough in the low dose and in the higher dose arm it was a little breakthrough, but high % of relapse.
Technically, the trial is live, but the No IFN & RBV arms are finished; closed.  They have started a new 5th arm which is TVR , VX-222 & riba.  I believe this is also a small arm of about 25 people per arm, and by trial design reserve the rights to add one more arm.

That is just 3 from vertex, but there could be more, since it also conducted trials on the same compound in Europe and Asia under Tibotec and Mitsubishi, if memory serves.  Also to be clear..... I am talking about the hardest to treat genotypes; not the easiest, since most of the trials have been performed particularly in the USA on G-1's
============
I believe that Boceprevir had a no riba arm, or reduced riba arm, somewhat in spite of the fact that it's very comparable competition got poor results w/ no riba arms;
http://www.drugs.com/clinical_trials/final-results-boceprevir-phase-ii-hcv-sprint-1-study-showed-significantly-higher-svr-rates-compared-7079.html
"Part II of the HCV SPRINT-1 study explored a low-dose ribavirin strategy in which boceprevir was given in combination with PEGINTRON and low-dose REBETOL for 48 weeks. SVR for the low-dose REBETOL arm was 36 percent (n=21/59) compared to 50 percent for a 48-week control arm with PEGINTRON and standard-dose REBETOL plus boceprevir (n=8/16). In contrast to the results seen in Part I, the low-dose REBETOL regimen was associated with increased viral breakthrough during treatment, higher relapse rates after the end of treatment and lower SVR, strongly indicating that standard-dose ribavirin is required to optimize response.
===================
I hope that 4 is enough, there may be more.  Because drug trials are expensive I believe that many chose to not duplicate redundant findings, and so if these had been successful we might have more trials and arms to look at.

"Many", well, not in quantity since there have not been lots of no riba arms, but say that the high percentage of these no riba arms were marked more with poor performance, did not meet end point goals

By "failures" I use the term that others use, you could call them "non successes".  I don't look at them as failures since the companies learned a lot.  They cured a number of people.  If you were cured in an arm in which TVR and IFN was administered and you achieved an SVR would you call it a failure?  On the other hand, those who treated without riba and failed..... about 70% if memory serves....considered it a failure.  It's relative to your definition.  The companies considered them not worth repeating in subsequent trials.  I used failure based on what other people referred to them as.

To repeat...... I'm making the distinction that until these trials which we are all hopeful about definitively prove what works I'm just saying it is a little early to discard these two drugs.  Seems to me that some of the drug trials use SOC as the rescue treatment when viral decline endpoints aren't met or breakthrough happens.

I'm not slamming current trials, not future treatments, just saying that at this moment SOC is needed to cure.

An I optimistic?  Yes, I've not wanted to do IFN myself.  That's why I am waiting.  I've turned down a number of excellent trials.  You might say I'm betting my life the better treatments are coming.  

It's just...... they are not yet here.  And so...... I look forward to such a time that it is not needed, but today..... it is.  

willy

[curiouslady1]

Fly and all, I have posted a lot of links in my journals.  As you know, these trials are currently underway.  I have given plenty of information for the trials thus far.  The SVR for PSI 7977 (the drug I am treating with and have been tracking) for GT 2/3 is close to 100% for the limited number of people who have finished.  It will be approximately 3 to 6 months before the first all oral results for GT 1 become available.  For combo with interferon/riba, the results are close to 100% again for those who did not stop due to unrelated AE or about 91% overall.  When you have 100% like this, it is highly suggestive that the particular triple in question is overkill.  

As I have already posted but is not published, people are most frequently having RVR within two weeks across genotypes with no reported breakthroughs according to private correspondence.  This is not published data but comes from a reliable professional resource.  Also, as you know, Pharmasset is moving in the direction of therapy which is restricted to one or two drugs which have already been fast tracked for some months now, are pan genotypic, have a high barrier to resistance, dose once daily and without remarkable side effects.  Of the four people I know of  on this site who have engaged in the PSI/BMS trial all four have RVR with little or no sides.  I also know 6 from other sites who have had the same remarkable experience.  While this is no sure indication of success, Pharmasset has an offer on the table for early January from Gilead which is willing to pay handsomely to acquire the company.  Gilead, which has been in the HIV business for quite some time, is not likely to throw down the huge offer it did without some strong indications that this company's drugs are worth it.

I did not keep the links but Gilead execs are disappointed in their own oral drugs and ABT seems to have so many drugs and arms that they are experiencing some problems too.  But do not count PSI 7977 among "lackluster" oral treatments.  It really does not appear that this drug is headed for failure.  

Although many drugs that showed promise have come and gone; there are not many that are impressing some of the docs that attended AASLD the way that these have been.  

People that are seriously considering treating in a trial and either cannot treat with interferon or do not wish to treat with interferon ought to be given information that they will find helpful.  I would assume that many, including others on this list, do not wish to wait until all the SVR data is in before making their choice.  Many may feel that the info available are very favorable for treating with PSI 7977 and for not treating with interferon.  No one should take offense at this.  Hopefully we can all help them find what it is they are asking for.    For anyone who is interested, the link is clinicaltrials.gov.  

[willbb]

Many may feel that the info available are very favorable for treating with PSI 7977 and for not treating with interferon.
---------------------------------------------------------------------------------------

To date ..you "can not"  treat with this drug..you can only be part of the experiments they are conducting to ascertain whether or not in approx. 3 to possibly 5 years they willl be viable..

We all hope so....

[hrsepwrguy]

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


Just for the record that was the OP original question, I see no mention of PSI 7977 or any combinations including this drug

[penn1023]

Thanks for your journal entries. I'm learning very much from them. I intend to do an all oral within two years, hopefully!

[curiouslady1]

. . . 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.  

[hrsepwrguy]

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 !!!

[curiouslady1]

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.    

[OdinLovesLife]

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.

[OdinLovesLife]

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 :)

[flcyclist]

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.

[willbb]

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.   .
-------------------------------------------------------------------------------------------------------
Is this forum not to share thoughts ,ideas,opinions and facts for  everyones benefit?
Are the folks currently in Abbott trials are not included?

[hrsepwrguy]

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.

[Willy50]

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

[curiouslady1]

Wonder whatever happened to Millie?

[milliehepc]

ok let me see if I can acess that message.  Hold on.

[milliehepc]

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.

[orphanedhawk]

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

[Advocate1955]

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

[milliehepc]

I replied.

[milliehepc]

I am going going to NYU in New York.  

[milliehepc]

Yes.  Thank you.  I am not making a decision until I become more knowledgeble of the trials.  This forum is unbelievable helpful.
Millie

[milliehepc]

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

[milliehepc]

I will look into this.

[hrsepwrguy]

"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.

[milliehepc]

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

[milliehepc]

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

[fretboard]

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

[curiouslady1]

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.