As the results come in ~ Relapsed

Question

Hoped once again this was my time to SVR, even reached undetectable through 4 week post.  At about 8 or 9 weeks post, I knew it had returned.  I went from feeling fantastic to suffering the joint and muscle pain all over again.  This morning it is confirmed...at 12 weeks post, I have relapsed.

GT 1 with cirrhosis
5th time treating
3 x non responder on Interferon and Infergen
1 x viral break through on Incivek
1 x relapser on Sovaldi

Time to shake it off and wait for what's next...

ASmile4U · Answer

I am not post transplant, however, there are a few here that are and very knowledgeable. You would get a much better response if you start your own thread asking the questions you have posted here. It will post at the top of the page for everyone to see. Just click the post a question tab... :)

oorah5 · Answer

Thxs Nan for responding.means the world to me. Rbc went up so no transfusion. Potassium is high which is a worry but ekg was good. Blood work again on the 31st.New meds will be in by the first of the year,(through va)so will get clear then!!!you and hubby stay well

eace829 · Answer

I'm saddened to hear this.  I saw my Dr yesterday and he proposed the S/O, 3 month regimen. I'm 4 years post transplant and there haven't been many studies on these patients, so I'm reading as much as I can. 
Tentative start date in September.  What is this new drug that's due out in Oct?   I kind of feel I don't loose anything in giving it a shot.  
I am new to this site and find it to be very informative, encouraging and truthful.  Thank you. 

It's difficult for me to know if any of the posts are post transplant.  If any of you are, share please.

Mmorgan856 · Answer

Not trying to be negative concerning the new drugs coming end of year but how do they know higher cure rate as opposed to solvaldi.  Isn't solvaldi treatment in the 90s so far as SVR??  Would that mean new drugs are possibly showing 100 percent cure rate, or is that impossible??  Again, not trying to discourage anyone, just hearing comments about  how the new drugs in the future will give a person SVR if current treatment fails.  Just wondering

Livelife777 · Answer

My heart just sunk.  This is becoming not the news that we had all been hoping for.   Smile, I'm really sorry.  Guess with the addition of Sovaldi, we were believing it was a miracle pill, and infallible.
Oorah too, I'm also saddened as well for you.
Been thinking about the posts regarding special populations, and reoccurrence.  It talks about geno type, male/female, prior treater, cirrhotic or non, ect.  What it really comes down to is prior issues, and probability of treatment outcome.  Not a cookie cutter situation as we all have degrees of past variations.
Will look at the bright side.  Do feel the new meds will offer a SVR for you in the fall.
The big pharmas will have been  fine tuning the release of the new meds in Oct, and at that time SVR will be your future.
Be well
...Kim..

hepcandme · Answer

So sorry that you relapsed - especially after all you have been through.
 October 10th is the release date for the next miracle drug!

Then those of us who relapsed will be posting new sides and being confident that this next round is the one for us to reach SVR

Best to you and your health

sue4hula · Answer

I'm so sorry to hear this news.  I've been there twice before and an currently on week 9 of 12 of the Sovaldi and SOC.  I am hopeful, but it is tough. 

The good part is that we are all in this together. We are all here to support none another, no matter what.  

Take care and be well.

oorah5 · Answer

Was on sol. And rib. Reduced the rib. But didn't help.did get almost 10 weeks in.I had no other side effects so felt like I was on my way.next time!!

Sovaldi13Newbie · Answer

I'm with Verdugo, controlled studies with even hundreds of participants can't exactly be extrapolated out to tens of thousands of people treating. I do see good news and the next treatment is even better than this one. You'll be on that train and we'll some day be saying congrats on your SVR!!!! best to you...

nan535 · Answer

Very sorry to hear you had to stop treatment. What treatment were you on?
My husband's doctors had me giving him a procrit shot every week for the first 10 weeks to get his hgb over 10. Problem is it would set off a serious bout of HE every week so we asked the doctor to stop the procrit and give him blood transfusions. He has received a total of 4 blood transfusions since and has held steady between 8.5 - 8.9. Now he has only 16 days left of this 24 week treatment (Sovaldi + Ribavirin). My husband does not have heart issues so I can certainly understand why your doctor is being cautious.

You will probably need to wait for the Sovaldi/Ledipasvir  treatment (without ribavirin.).  Was the off label combo Sovaldi/Olysio considered?

Hang in there.  Your day will come.
Nan

nan535 · Answer

I am so sorry to hear this. I know we all feel the same as if it happened to each of us because we can all relate to what you have gone through on some level.  
 For whatever reason, it looks like (after treating 5X) an interferon and ribavirin treatment is just not going to work for you. That said I know it was not a waste as it stopped your liver from being damaged further and it also gave you a break from the joint pain and muscle pain for the time you were on treatment.

As others have posted there are other treatments coming along which will get you there. If I were you, I would say no to any interferon/ribavirin based treatment going forward.  Just my opinion...of course.

I wish you the best. I can imagine how disappointed you are. Hang in there.

Nan

oorah5 · Answer

I also 'received sad New today. Dr.had to stop all meds due to rbc going down too 8.did 2nd shot of procrit have blood test on Thursday with probable transfusion.I also have heart condition which entered into the stoppage.Will see what's next step is because there will be a next step. Best wishes to all

ASmile4U · Answer

I knew there was something I was forgetting to include.  I did Sovaldi, Pegasys and ribavirin with virtually no sides other than fatigue.  Platelets remained stable for the entire 12 weeks as did all my #'s  .

Thanks everyone.  Not to be negative but I do believe we're going to see more and more relapsers as those of us that began treatment early on are now hitting that 12 week post testing.

susan400 · Answer

I am SO SORRY.  I can relate to your disappointment all too well.  My heart aches for you, seriously.  Were you on the Sovaldi and Riba, or Sovaldi and Olyssio or the Sovaldi and SOC?  I'm sorry, but I couldn't remember which combination of drugs you were on.  I go for my first viral load on this treatment, this Wed.  I'll probably have to wait until I see the doctor on July 31st to hear about this first viral load.  I am on Sovaldi and SOC.  Don't give up hope..., there will be something to come along that will get you there.  That's all I've been repeating to myself, too.  Susan400

pooh55811 · Answer

I am very sorry you relapsed. I know this is devastating, especially after 5 treatments. You have surely gone through so much. 

Hang in there. There will be something in the future for you. 

Wishing you the very best.

Verdugo · Answer

Sorry you relapsed especially after feeling so good and treating so many times.  I think this forum is getting the rattle of reality and unfortunately the first wave of treaters takes the brunt of Sovaldi's imperfection.  You should be able to treat with Sovaldi and Led soon, with little to no sfx.  So like you said, "shake it off", relax and recharge.

nursehepc · Answer

#$%#!

My heart goes out to you. 5 times, so much effort and disappointment. Please keep hope alive, several, even more tolerable options for you are on the horizon. I am sooo sorry. 

Be good to yourself. Jo