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Avatar universal

Just as I thought,relapse

It was too good to be true-finally after doing every study known to mankind since the 80s and I mean a shot of 3 million interferon everyday,and then on to the 5 million everyday and when that failed it was 10 million everyday.And everything else that came after with failure after failure.And finally sovaldi and olysio come along and I finally find a hero,finally negative and just in the nick of time.Geno 1a-stage 4 cirrhosis complete with every possible side effect that makes me want to say the hell with it sometimes.Today I go and get my 1 month after Tx bloodwork and the first thing I see is Hepatitis C quantitation 694,770.Ast and Alt ballooned from normal range to 200 and 159.I had to sit down on the bench outside the office,no way I could drive cause I had no legs.I had a feeling something was wrong because I was so itchy and still having leg cramps but I hoped it was the cirrhosis.Naturally my docs first available was in two months so once again its back to the drawing board.The lady who takes my blood told me she had two yesterday on the same treatment that also relapsed.I just cant believe or accept the amount of Hell you go through only to end up on a treadmill that takes you nowhere.
                                        Good luck to you all     Glen
60 Responses
315737 tn?1407298997
Is there anything to be taken as positive that you were negative during this treatment, and I think you are saying you weren't during the others?
Avatar universal
I'm so sorry to hear this. All the damn hype over this drug yet were hearing about relapses over and over. Then that lady tells you about two others.

I know that "kick in the gut feeling" but I know that doesn't help much. Hang in there, wishing you the best.
683231 tn?1467323017
Hi Glen

So sorry to hear of your treatment failure. That is what we here all fear but at least we still have reason to hope with the new sovaldi /ledipasvir coming and others not far behind you wil get another chance at a cure.

I know I would be devistated at the news of the virus coming back but hang in like they say "Keep Calm Carry On"

Big hug to you
Lynn
Avatar universal
So sorry to hear of your relapse.  It is such a devastating thing to hear.  
Hang in there.  Give your body and spirit time to rest and recover.  

I am still on treatment, Sovaldi and SOC and hope to hit SVR, but we will see.  I have treated twice before, the last time 24 weeks with Victrelis/RIBA and Interferon.  I am thankful the sides are better this time.  I also try and keep in mind that, SVR or not, my cirrhotic liver is getting a break today.  

Again, sending you virtual support and courage.  We are all in this together.

Be well and take care.
Sue
Avatar universal
I am wondering if the result would have been different if there had been a 3rd drug in the mix , like Sovaldi, Olyssio and Ribavirin, instead of just Sovaldi and Olyssio??  Just a thought?  All any of us can do is try these new drugs out with a hopeful attitude and hope and pray for a good result.  Some will be fortunate enough to cure, others won't.  I know alot of people that cured on the Telaprevir and SOC and on the Boceprevir and SOC and then, some that didn't.    So sorry to hear this distressing news.... :(    Susan400
Avatar universal
That is correct,first time ever negative on this treatment.A positive? yes  But the disappointment right now is far outweighing the positive.Knowing that the "Death Cramps"in my legs will be returning along with the nosebleeds and the itching with no energy brings you back into that depressing world.Just not strong enough anymore to keep that positive outlook.This stuff has worn me down.
                         Good luck Mad
Avatar universal
Thanks Can do-I will
         Good luck to you   Glen
Avatar universal
Thank you Lynn-I will do that
          Best of luck    Glen
1815939 tn?1377991799
Glen, I am so sorry that you relapsed. I know it is very devastating, especially after all of the treatments and misery that you have gone through.

Try to regroup and hang in there. More treatments are in the pipeline. One will be right for you.

Wishing you the very best.

Avatar universal
Thank you Sue-I can relate to that 24 weeks of riba and peg,and then I did those 2 with incivek.You are 1 tough cookie to have endured that regimen.I do realize that my cirrhotic liver got a 3 month vacation from the dragon but I have to adjust mentally from finally being "healthy" to back having a what can be a deadly disease again.The letdown is unbearable right now but time passing will make it easier to swallow.
                              Good luck    Glen



Avatar universal
Thanks Pooh,its still so fresh as I found out today as to why I am beating myself up.As time passes I will learn to accept this and wait for the next treatment.Hopefully time is on my side where the waiting wont cause worse problems.
                 Good Luck to you    Glen
Avatar universal
Sorry to hear this news. I can imagine your distress right now. But don't give up your hope. The time on treatment did prevent further damage to your liver and though the viral load is up who knows how long it will be before those prior symptoms return. You are just a mere 4 months from the new treatment.  You can do this.  Take a deep breath and live your life. The day will come when you will reach SVR. Just hang in there.

Stay strong, Glen. Keep your hope alive.
Nan
Avatar universal
Thanks for the positive words Nan
I have had some very encouraging words written on here to me from you and a lot of other kind folks and they are deeply appreciated and very helpful at this time.Since I live alone your thoughts can run away from you in the wrong direction without someone there to help so this forum is very therapeutic for me at this time.All the positives have already lifted my spirits so thank you Nan and everybody else.
                            Glen
Avatar universal
I'm sorry to hear about what is happening to you. I'm praying you have family/friends that can support you emotionally thru this difficult time.  Take care. Mary
Avatar universal
Thank you Mary
Just glad to have you,thank you so much for your support.This forum has really helped me on a rough night.
                            Good luck Mary     Glen
Avatar universal
My doc told me that there is going to be a whole new world of treatments coming soon, they are curing this another way than the old standard of care. We are just on the front-lines of this new drug, sounds like they really need to tweak here and there, tailor it for some better, etc. But keep heart (I know, easy for me to say) it's not like 10, 15 years ago when there was only SOC for 12 months or longer and such a low cure rate. There will be better cure rates and you will get what you need, a cure. Take awhile to recoup and regroup as you must be devastated, I know I would...But this too shall pass and remember the things coming down the pipeline, we're just the guinea pigs with these new treatments, they'll get it down much better....be well.
6708370 tn?1471490210
Oh  man! So sorry Glen that your treatment didn't take

I am hating hearing about this. I know how you feel as I relapsed at my 4 week EOT labs. I kept waiting to feel better, thinking that it would take a while for the drugs to leave my system. But based on your experience, I think that if you are feeling pretty awful at the end of treatment, there is a good probability that Hep C is back attacking your liver

I was so hopeful that my case was a true anomaly and that everyone would be cured with this new miracle drug. Or nearly everyone.

I am leaning towards pushing for a treatment with an Riba added, as Susan suggested for my next treatment with the Ledipasvir/Sofosbuvi.

As someone told me when I first learned that I would not be "cured" - at least not this time around, lean on the people in this group for emotional support.

Sending you good thoughts and a wishes for good health in your future

~Linda
Avatar universal
Thanks Linda
The good people on here like yourself have really eased the pain of this afternoon.I do believe now that I have finally experienced clearing even though it was brief that the permanent solution is right around the corner.
                        Good luck to you Linda      Glen
Avatar universal
Thank you Newbie for the encouraging words.Coming on this forum and hearing all this informative information has really given me hope.I go back to see my doc on August 27.Hopefully he will have my final answer so that this will be my last heartbreak.Thanks again and good luck to you.
                                       Glen
446474 tn?1446347682
Glen,

I am sorry to hear of the treatment's failure. That is a tough blow to take.

Please give yourself a break and take the time you need to recover from this setback. Lick your wounds and be good to yourself. You fought the good fight. The combo of Cirrhosis + hepatitis C can make life an emotional roller coaster for sure. Sometimes we can be so up  only to be shot down the next.  You gave it your best shot. That is all any of us can do. Remember you didn't fail the treatment, the treatment FAILED YOU! Unfortunately there are no guarantees in this business, no 100% anything especially for folks with cirrhosis. Hopefully someday in the not too distant future we will see a cure, we just ain't there yet.

If it makes you feel any better I did 48 weeks of Sovaldi + riba and was undetectable for 47 of those 48 weeks yet relapsed within a month of stopping before my transplant. So now my recurrent hep C is messing with my new shiny stage 0 liver. Grrr! That makes me very unhappy to put it mildly! I will be back in the ring at the end of August going for the crown for the third time this time with Sovaldi + Olysio + riba. Will it work? Who knows? I'm not holding my breath I can tell you that. All I can do is give it my best shot. The rest is out of my hands. I am learning acceptance. If I fail the treatment then I will move on to  the next latest and greatest treatment. With my new liver I have time thankfully. I am sorry that you and others have cirrhosis which makes time an important factor. Living with cirrhosis, which can be like living with a ticking time bomb is a very stressful situation to deal with. So many unknowns.

I know you will rebound in your own time and do battle again. Try to hang in there as best as you can. You are doing all you can so don't beat yourself up over it. One day I am sure you, me and a lot of other "hard to treat" folks will beat this thing once and for all.

Unfortunately when one has cirrhosis + hep C smooth sailing is usually not in the forecast. But...
"We may not be able to control the winds but we can adjust our sails"

Hang in there. Better days are ahead.
Hector
Avatar universal
Glen.  My heart just skipped another beat....I really feel for you and so sorry for the unfair results.  i guess when we all started this journey, we were naive to realizing that some would not get there.  Was not really expecting this treatment to not work on so many.  We all started about the same time, and now the results.  I would agree that the Riba should be a consideration for follow up treatment, if advised.
I know it's not easy,  but at least the newer meds will be available as Nan said, in 4 months.  I understand you must be worried with the enzymes going up so quickly.  We have all had this disease for so long, that a few more months should not make a difference.
Avatar universal
Sorry ..cut off.     Hector is right that you gave it all you had.  The next go round I'm sure they are going to hit you will all they've got.  As Hector mentioned he's going to do the same with the added Riba.  Will tell you this, I did the Riba/Sovd combo, and from the posts that I read while treating, it sounded like the Oys/Sovd had more negative sides.  I have no doubt that you will get thru treatment with less issues.
We will all be rooting for you Glen.
Be well, and stay strong.
...Kim
Avatar universal
You might want to consider the Abbvie drugs which should be approved before the end of the year. I am geno 1a, failed very treatment available including injecdting 15mcg Infergen daily. I have had cirrhosis since my first biopsy in 1991.

I did the Abbvie turquoise trial in the 24 week arm and have been clear since Lagte February 2013. I just recently got my 1 year clear since end of treatment. I had virtually no side effects.
Good luck to you. Don't give up.
1815939 tn?1377991799
And to All:

In a recent Clinical Care Options article Mar Sulkowski, MD was talking about Cirrhositcs and the new treatments. Here is [part of what he said:

"Some fine-tuning of therapy may still be needed in this group of patients. In the phase III ION-1 study of sofosbuvir/ledipasvir in untreated patients, there appeared to be some drop off in response rate among cirrhotic patients who did not receive additional ribavirin compared with those who did (94% vs 100%, respectively). In the phase III ION-2 study of the same regimen in previously treated patients, cirrhotic individuals appeared to benefit more from the 24-week regimens than from 12 weeks of therapy (100% vs 82% to 86%, respectively). And in the phase III TURQUOISE-II study of the 3-drug regimen plus ribavirin in cirrhotic patients, previous null responders with genotype 1a infection also appeared to do better with 24 weeks of therapy compared with 12 weeks (93% vs 80%, respectively)."

And another quote from the same article:

"..... a course of sofosbuvir and simeprevir, a potent once-daily regimen. The final results of the phase II COSMOS study that evaluated this regimen were hard to beat for cirrhotic patients with genotype 1b HCV: All genotype 1b patients were cured, as were most cirrhotic null responders.

The response rates in this study for patients with genotype 1a infection were also quite good, although a number of patients with this subgenotype receiving the 12-week regimens did experience viral relapse, whereas those treated for 24 weeks did well: SVR rates in the 12-week arms were between 88% to 100% across arms vs 100% in both treatment arms for the 24-week regimens. Use of ribavirin did not appear to make a difference to SVR rates, but this is not definitive. I know that some of my colleagues are adding ribavirin to the regimen for patients with genotype 1a infection who are receiving sofosbuvir plus simeprevir, on the basis that other studies have demonstrated some benefit from this approach. While I understand the limitations of the COSMOS study—it is a small phase 2 trial—currently, it is the best option for HCV cure for this cirrhotic patient who has been waiting a long time for treatment."
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