2 years of treatment and virus is back

[need2know]

I just finished 2 years of standard treatment for Hep C in Nov. 2006.  In Feb. my labs showed that I had relapsed. I had maintained an undetectable viral load during treatment and couldn't wait for the day the treatment ended. For the final 6 months of treatmen I was bed ridden. I took 80,000 of Procrit weekly, many times had to reduce my dose of ribravarin and on most days I couldn't have cared less if the sun went down or came up.
I have a very supportive family that has been by my side thru this whole ordeal. I don't know what I would have done without them.
My new treatment option, as I have been told is 4 more years of that god awful medication with hopes that it will be reduced to 3 years when Vertex is suppose to come out (in 3 years). Anyone gone thru the same thing?
I have been told that I have the option to wait until VX-950 comes out, or to go back on treatment in June which will have given me a 6 month break in treatment.
Can anyone help, PLEASE!!

[jessica222]

Hi,
I don't have answers for you, but wanted you to know that my heart goes out to you. I didn't know that 2 years was a standard.  I was very sick toward the end too stopped at 46 of 48 weeks and my first reaction was never again....  How bad is your liver?  can you wait 3 years? did you have a lot of symptoms from the HCV? I often wonder what my reaction would be if I tested positive again...  Hang in there and enjoy the reprieve from tx.
Jessica   

[willy]

I'm not pushing this but it may be an option.  The timing would be crucial as the study is rapidly filling and may even already be closed in your area.  There are also other promising studies coming but this might be worth looking into (today  ) or asking your doctor about.

http://www.hcvanonymous.com/SMF/index.php/topic,5761.new.html#new

Keep reading here or around the internet.  There are many potentially beneficial therapies in development.  One other thing to mention is that if you are really run down it may take some time to normalize and be strong enough to treat again.  That decision is between you and your doctor.  It may be that even if Vertex gets the treatment approved it may not be out for 2-3 years.  It is quite possible that after it is approved that the "cure" rate may improve.  Many people in trials are denied critical "rescue drugs" during what may be crucial times during the trial (the period in which they are receiving the drug that is in trial) so as to better understand the drugs affects.

I'm very sorry to hear about your results.  I hope this helps and will see what else others may suggest.

best wishes,
Willy

[19Dragon52]

(((need2now)))

I'm with Jessica...my heart is really aching for you.  What a haul to end up with a relapse!  I am so sorry.  I did 48 weeks of tx and I can't imagine being on 2 years straight let alone another 3-4 years!  I would certainly take some GOOD time to recoup...your liver must have at least gotten a reprieve.  I have to be honest and say I have never heard of anyone (although there may very well be) being on treatment for what will end up being 5-6 years.  I'm happy to hear that your family is supportive, though.  That is a Very Big deal!  I just don't have any answers...I would be foolish to try but I can say that Willy has given you some good food for thought and hopefully others will come along and be helpful.  I can tell you that we will be here for you and will support you in whatever way we can for as long as it takes.  If you want to check out the other studies, though...when Willy says *today* that's exactly what he meaans.  Time is of an essence in regards to the studies.  They fill up all too fast.

My Best To You & We're Here, okay?.....

[DougV]

Need2know,

I can't even imagine doing tx for that long, I thought 48 weeks would never end.  I can only assume you must have responded extremely slowly.  As for four years of tx, I've never even heard of that.

I also relapsed, but I took (and am still taking) a long break in between.  I did so for several reasons.  Fiirst to get other medical issues taken care of and second and more important to give myself a break from pills and shots.

I'd suggest a couple things.  First I'd see another doctor just to get another opinion.  Has your doctor considered infergen?  What is your liver status?  That would seriously impact what I'd do.  When was your last biopsy?  Two years of interferon may have allowed significant healing.

I'm really not sure what to say or suggest, but I can tell you one thing for certain, you're far tougher then I am.

Best wishes.

Doug

[willy]

I've heard froma few people that the Telaprevir (VX-950) studies may already be full (inspite of the fact that some have not even opened for enrollment yet).  There will be a few more interesting studies coming up from other similar protease or polymerease inhibitors.  Be selective though some of these may be early early studies that an SVR will not or cannot likely be attained.  You may also need to recharge and build back up before going again on TX. 

You might also consider getting a fibrosure test.  Some people end up with improved liver damage scores after treating.  You may have reduced your liver damage and may be able to wait a bit longer to treat.  By the time you need to treat there may be more effective treatments.

Willy

[Helen]

 I really really think you should get a second opinion. Ive never heard of such a thing. 2 years!! Something just dosent seem right. I dunno, personally I wouldnt do anything until I talked to another specialist that is familiar with treating hep C.
 I wish you luck and please keep us posted.

 Helen

[Ella]

Maybe they just mean maintenance dosage until the protease inhibitors come on to the market in 3 years?

[Hank's mom]

Dear Need:
I can't imagine the heartbreak of that notification. I am curious as to why they didn't stop earlier - 80,000 of Procrit is an awful lot! The good news is that you did gain some ground and as you recover from the 2 years during the waiting period you will become a better fit for whatever treatment you need to take. And, yes there are many new drugs coming down the pike and quickly. It seems as tho there is now a race to come up with something both user friendly and effective. Don't be in too much of a rush yourself if you can. I tried to rush into maintenance after I was taken off 2 different tx's. that lasted only 6 mos. altogether, I did a crash and burn. Also see if you can find a good therapist, or friend, mentor to help you with this news, though we are always here for you and you will see that many here have had relapses and had to start over, someone you can go to in person is some added support and a second set of eyes and ideas. I held off on that mostly because weeks went by when I couldn't get dressed or last long enough stamina-wise for weekly sessions and also because I was sure I could go it alone. It was a mistake on my part. It may not be the same for you so I don't mean to sound preachy, just offering something more. Meanwhile try to be kind to yourself, eat well and keep up the water intake, and… by the way pat yourself on the back for remaining steadfast to your goal of healing. I think what you did was amazing!
momxfive

[need2know]

I appreciate all that have responded to my last post. I am very new at this. I must admit that when I was first treated that I was under the assumption that I would do treatment, it would be over with, and that life would go on. I never did the research that I have been doing now, since I have been told that I had relapsed. It is still a very confusing illness.
Some of the things that you guys have posted to me...I am not even sure what they mean.

My doctor, who has spoken all over the world on Hep C said the reason  I had to be treated for 2 years (initially) was because my blood levels dropped so much and so often. I became very anemic and had to be pulled off ribrivarin many times...and many other times the dose had to be dropped. He told me that tx only worked with both drugs together (Pagasus and Ribriviran). That is the reason I had treatment for 2 years. He said at this date in time that when ever you have to do treatment for a second time after a relapse that you have to doubled the time that you were on it before. That is where the 4 yrs comes in.

As many of you have suggested..I do have an appointment at the University with another specialist, however, I could not get into this doc until July 20th. I am suppose to start second round of treatment at the end of June.

HAS ANYONE OUT THERE EVER RELAPSED??? I HAVE BEEN TOLD THIS IS DIFFERENT THEN A NON-RESPONDER.

So many of you that responded back to my first post seem to be veterans..I am so new at all this and just wished I had gained more knowledge before I was ever treated the first time.

I did find a good support group, went for the first time a few weeks ago. It is only held the first Tues. of the month.

Any new ideas would be appreciated.. I am getting nervous, when I know that I should be trying to reduce my stress.

Claudia

[DougV]

Claudia,

Yep I relapsed as have others here.  Major difference is we still have options that non-responders do not.  We can try different forms of interferon or we can try longer treatment durations.  For those who failed to respond the odds of successfully treating with different forms of interferon are small.  Most non-responders are basically forced to wait and see if new drugs become available.  Good part of being non-responder (good being relative) is clincal trials tend to be for treatment naive or non-responders so they have options in that area we don't.

As a relapser you have six options that I see:

1.  Do nothing and take a wait and see approach.
2.  You could try some of the alternative medicine routes, but none have been demonstrated to be effective.
3.  You could double tx duration.
4.  You could try infergen.
5.  You could do a maintenance routine, lower doses of interferon only in hopes of keeping the liver healthy.
6.  You could try and get in a clinical study on one of the inhibitor drugs.

To me, and I'm not a doctor just a hepper, the most important piece of deciding what to do is what is your current liver status?  Did you have a liver biopsy?  (That is where they stick you in the side and remove a small piece of liver or two or three pieces.)  Assuming you did what were the results?  This is a slow disease, if your liver is healthy or relatively so you might want to wait and see what happens to the newer drugs undergoing tests. 

I'd sure sit down with my doctor and talk to him about it and ask what all your options are.  Even then a few weeks start difference is going to make no real difference, you already have a second opinion scheduled, wait and see that doctor before you begin treatment.  Your body your choice and your current doctor has got to respect that.

Doug

[OZ]

Claudia:
It is unfortunate that you had to endure 2 years of treatment because your blood count kept dropping.
My doctor used a different approach.  I stayed at the full dose of ribavirin for 10 months, had shots of procrit every week, and 3 transfusions of packed cells.  In retrospect, I'm not sure that the transfusions were the best idea in the world, but at the time my doc was telling me that it was important to stay on the full dose of ribavirin.  He was pretty innovative and committed to keeping his patients on treatment.  Even with that, I was pretty much, the walking dead.  I am sure you have seen more attractive zombies on the late night Classic movie channel.
It wasn't until my doc decided to go to Afghanistan to set up their medical program and I got transfered to some one else (whom I did not like at all) did I have my ribavirin dose decreased.
I am still clear, nearly 2 years after completing.  That is my story, in a nut shell.
I am genotype 4A, a rare genotype in the US, mostly found in Egypt and the middle east.  I am not from either place. 
Do your research, get a second opinion, that is what I would do in your situation.  Don't think personally I would make it through treatment again.
Best of luck to you AND welcome.
Donna

[Jazzdenova]

I did 48 weeks, was clear at 4 weeks and when I did the 6 month SVR it was back. My Doc said it would be a waste to go longer and wait till something new came along.

[Hank's mom]

Dear need: Thanks for explaining further about your situation. I, at least, can better respond now that I understand more. And, as you must have noticed from the posts you have found there are many relapsers among us.
When I read your description of the way things have been for you, I was even more impressed by your perseverence. I hope you get what you need from the new doc you are meeting with which doesn't mean you are throwing awy the original doc. It sounds like you like and respect him. I think that's a big asset when a person is in treatment - even for a scraped knee let alone for the big stuff.
Be well and stay in touch,
momxfive

[Rainbow]

Even if treatment doesn't work, many times some of the liver damage is reversed....especially because you were on treatment two full years.  In my opinion, I think it would be worth checking.  If some of the damage was reversed, you may have time to wait for Vertex.

Two years is a long time and not many doctors treat that long......not many treat for 4 years either. 

The past predicts the future.  If you were able to clear the virus before, you would probably do it again on a 4 year treatment....but you can also expect the anemia to happen again. .....which brings me to the next point.

In order to expect the treatment to work, you must take at least 80% of the drugs, 80% of the time.  Dose reductions and interruptions are to be avoided at all costs.  If somebody is taking Procrit 80,000 units a week (which is an unusually high dose) and they are still anemic,  (as a nurse), that would clearly tell me that the Procrit isn't working.

There are several things that can cause the Procrit not to work (like lack of Vitamin B12, malnutrition, bleeding)....but THE MOST COMMON CAUSE for Procrit not to work is LACK OF IRON STORES.

IRON is needed to produce red blood cells and even though many people who have Hepatitis C, have too much iron, not everybody does.  If you don't have enough IRON, Procrit won't work.  Do you know if your doctor checked your iron? 

I hope I don't offend anybody by saying this......If a person fails one treatment, you look at the possible reasons why they failed.  Interrupting/decreasing the dose of Ribavirin and untreated anemia, both lower your chances of success. 

If you expect to succeed and remain clear, a second treatment would HAVE TO be an improvement from the first.  Treating someone with the same drugs and getting the same anemia ....for 4 years, would be cruel if you ask me. 

4 more years of the same meds, then in 3 years taking Vertex (which will probably also include interferon) makes no sense to me.  In that case, why not do maintenance, which is a smaller dose of interferon and NO Ribavirin capsules?  So you wouldn't have the anemia from the capsules.

Why the same Meds?  Why not Infergen?  Why not a second opinion?  You deserve it....and you certainly don't deserve 4 years of treatment with drugs that can cause permanent damage (long term anemia can cause thickening of the heart).

Best of luck to you.