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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
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Avatar universal
That's what my father in law always said except he finished it with "is Hell".Same thing.I do wish you and your friend luck Chris.You definitely will clear on this combo,if not at 2 weeks then at 4 weeks.I do not know your genotype but it seems those of us who are 1a are the ones that are relapsing but that doesn't mean you will relapse if you are.I see on here lots of 1a's that are staying negative as well,its a crapshoot.I have failed on everything that's been out there since the 80's so to finally get undetected and get a huge hug from my doctor was such a surreal experience,one that I thought I would never see in my lifetime.And then to have the rug pulled out from under me so quickly that I didn't even have time to celebrate it is still too hard for me to swallow.I guess I'm a sore loser.
     Good luck to you and your friend    Glen
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Avatar universal
I'm so sorry to hear you relapsed.  I'm on day 5 of Sovaldi and Olysio, and posted earlier now I think I have gout in my right big toe joint.  My take?  I'm just never going to get through a treatment successfully.  This is my 4th attempt at treatment.  I've never cleared before.  I hope it isn't gout but it doesn't matter because I'm going to finish this drug regimen regardless.

You temper my hope and validate my reality with yours when others, friends and family, say "This is it.  I'm going to get cured."  That would be so miraculous I can't believe it, and so part of me doesn't believe I'll get cured.  Sure I hope I get cured and you, too, but when you feel good now and then you realize how bad you've been feeling and for how long.

Strangely enough, I know of someone right now fighting a battle worse than mine.  5-year breast cancer survivor now has uterine cancer.  After 4 bouts of chemo, red and white blood cells are too low for 5th chemo and she's waiting for those blood cells to ramp up before she can do the 5th chemo.  Ugh.  You know what I think?  Getting old *****!!
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Avatar universal
I would not have the confidence to do the s&o even for 24 weeks.This may not be the correct way of putting it but I now do not feel the combo is strong enough to get rid of my geno 1 stage 4 hep c.I feel like its 10 bucks of regular at the gas pump when what I need is a full tank of premium hi test.
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Avatar universal
Went back and looked at the data. Of the entire group of F4 patients 2 did relapse. both were 1a's that were included in the 12 week treatment with and without rib. One of them was treatment experienced and one was not. All of the F3 & F4 1b's were cured if I'm reading the data correctly.
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Avatar universal

http://depts.washington.edu/hepstudy/presentations/?PID=82
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Avatar universal
The rule of thumb now is for previously treated F4 cirrhotic 1a patients to include ribivarin in the 12 week s/o treatment or to prescribe 24 weeks of s/o. All F4 patients in COMOS cohort 2 that we given 12 weeks with s/o + ribivarin and 24 weeks with s/o were cured, 39 patients in all.

As of seven weeks EOT I was still UND so I'm keeping my fingers crossed. I was however approved for 6 months of s/o but my doctor stopped the treatment at week 12 saying you're cured. I asked him to reconsider twice but he declined. If I do relapse he won't be getting a Christmas card from me but more than likely a 24 week supply of coal delivered to his front door.

depts.washington.edu/hepstudy/.../cosmos.pdf
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Avatar universal
First time I am having big discomfort from my abdomen-my numbers ballooned to more than double after my relapse.I know people said at least my liver had a 3 month vacation but I am hoping the s&o didn't do more harm than good.
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Avatar universal
Yep, that's what I figure is happening to me.  Felt pretty good while taking the O&S combo, but crashed as soon as it was completed.  Still showed UND at the 12th week of therapy, and next quant not due until 3 months away.  No surprises.  I'm prepared this time.  Been on this treadmill way too long too!
All the feelings you described I know intimately.  
Hang Tough
What else can we do?
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Avatar universal
Interesting.   My doc is not recommending q80k polymorphism screening prior to S/O tx.  Has your doc quantified S/O relapse for 1a gtypes?  The quickie COSMOS study has me a bit sceptical given the race to the profit  wire pharma mentality.  Thanks for sharing.
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6708370 tn?1471490210
you can only see photos of those who shared a photo on their page
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Avatar universal
Thanks for the link Nan.  I'm clueless as to how to work this I pad to find the link but I have a friend to help me out.  Will definitely watch it.  I really need all the positive reinforcement I can get.  Oh. By the way, everyone,,, when I try to look up people's pages to try an put a face to a name so to speak, when I click on, a red sign comes up saying report!!  I'm sorry if I'm causing something I don't understand.  Sometimes, have to walk away from this screen, get so irritated..  Mary
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Avatar universal
Thank you, Mary.

Here is a video that should give you renewed hope that all will be free of Hep C in the near future.

http://video.healio.com/video/Paul-Y.-Kwo-MD-on-the-current-an;Hepatology

As I posted on another thread, what came to my mind after watching it was:
"Don't worry, be happy".   :-)

Nan
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Avatar universal
P.S.  your husbands blessed to have you by his side.  Hoping for his SVR. He definitely deserves it considering the fight he's went through.  SVR TO ALL
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Avatar universal
Nan,  your words of wisdom brought many tears.  Just what I needed right now.  Tonight!! That simple word...HOPE.  it's been a quarter of a century since diagnosis , to me, the failure of the first try at SVR took that hope away.  My doctor back then pretty much said, " oh well , sorry ". I guess I'm just having such a difficult time actually believing there might be a light at the end of the tunnel, so to speak.  So,, I will continue to visit here an pull strength an wisdom from u fine people, i( if ya'll don't mind ).   Who knows, maybe I'll make it into the warrior class!!!!!!
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Avatar universal
There are  treatments now and in the near future that are interferon free. There is no reason why you need to go through that difficult treatment again.

"But am I the only one here that believes this is not in our hands no matter how hard we fight the battle??  Am I scared? Oh yea.  Do I believe eventually this virus will be conquered, absolutely.. "

Mary - my husband has been through hell for almost four years now. What I admire and respect most about him is how he has never given up no matter how hard it got and how many peaks and valleys there have been in the road we have traveled. I have often wondered - will we get there? Will the day come when he will be hep c free and his liver will stabilize to the point where we can have our life back to normal? You are right - it is not in our hands but I have to believe that the ONE who does have our lives in His hands has a plan for us all and that He will bring us through this one day soon.  Everything we go through has a reason and a purpose and it may take a while but we will know all in the end.  

I know there are those who may not think or believe  as I do but I do hope that you will  find the strength and hope hat you will help get you through this very difficult time.

Nan
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Avatar universal
Glen, well,  you said something I have been thinking about since on treatment. " how can these drugs be working ig the side effects are so minimal compared to previous treatments?"  That has been running through my mind almost from the start.  I know what I'm about to say is opposite of what most people feel on this site, but I need to throw it out  there an let the chips fall where they may.   When my Dr. Mentioned  starting treatment again, I told him straight up, I would rather go be with God than suffer anymore interferon treatment.  I have so much respect for just everyone here that has that " never give up spirit "..  But am I the only one here that believes this is not in our hands no matter how hard we fight the battle??  Am I scared? Oh yea.  Do I believe eventually this virus will be conquered, absolutely.. Hey, I'm hoping I come through this experience stronger an not so negative.  Guess only time will tell.  GO, ALL YOU WARRIORS !!!    Again, my heartfelt prayers are with you Glen. Take care.  Mary
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Avatar universal
Glen
In  case you missed it, I think my post on an article by Dr. Paul Kwo may provide some helpful info:

http://www.medhelp.org/posts/Hepatitis-C/Why-SovaldiOlysio-at-this-point/show/2240181

Nan
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Avatar universal
Hi Candyce
I do wish you all the luck in the world with your bloodwork staying negative.I did know that I relapsed because all the dam side effects were back in full force.The itching was worse than it ever was as well.I don't know if your geno 1a but that seems to be the breaking point for this treatment.You shouldn't have anything to worry about otherwise.
                      Feel good and good luck   Glen
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Avatar universal
I am so very sorry treatment failed you. Not your fault

I am right behind you and scared, I am two weeks away from EOT SVR labs
Time will tell

I keep telling myself what everyone has said to you:
That the other meds are due out in late fall, and that they are options to treat with if failed S/O
And there is no viral resistance to Sovaldi

So hopefully the cures for you and ( possibly me ) and everyone will be here
in November
Stay strong !
Xox CH
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Avatar universal
Just so you know I am geno 1 and stage 4 cirrhosis.It seems that it is just the geno 1s that are relapsing on s&o.So if you are not geno 1 you should stay undetected on s&o.I am going to keep a positive outlook and try and be excited about the new drugs coming at the end of the year.I wish you good luck and more important good health.
                                        Glen
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6708370 tn?1471490210
Hi Glen

I know what you mean. Although this was my first try, it was just awful to learn that I had relapsed

I am anxiously awaiting the next Miracle Drug but have been feeling pretty down too for the last week

I don't think the word "fatigue" is adequate to describe the achey joints and muscles caused by Hep C and cirrhosis. So, people say things like, if you just begin your 5 K run or 6AM hike, then you'll get more energy

I wish. I was so looking forward to a reprieve from that Uber fatigue

Looking forward to sharing notes on our next run

Be well

~Linda

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Avatar universal
Holy cow Mad-72 weeks! You are one tough cookie! For what you have been through I hope you get rid of this crap and live a very long,happy and healthy life cause you deserve it.
                  Good luck    Glen
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Avatar universal
Thank you for your kind words and your wisdom.I know what you went through.I had the fever effects all the time with the peg and ribo and it was worse with the peg ribo and incivek.I cant even remember the names of the treatments before them but the lovely anemia was there every time.I'm weary from it all.There are times where I want to throw in the towel but I know my kids would be crushed and I don't want that.I am just so frustrated because after all these years I finally cleared and I didn't even have time to celebrate what I thought I would never see when they pull the rug out from under me.It just sux and I'm having a hard time accepting it.
          Good luck to you and good health    Glen
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Avatar universal
That was a very important piece of information Pooh.I have written down your whole reply and will take it with me to my doc on Aug 26.
                 Thanks very much    Glen
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