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The Dangers of Hep C Triple Treatment for Cirrhotics

Sadly, I have to report that my husband had to stop treatment after completing 5 weeks of the triple treatment (including telapavir). The "brain fog" I thought he had  ended up putting him in the hospital for 4 days. His diagnosis is Portosystemic Encephalopathy. Though he is home now  and off the meds for 5 days he is not even close to being who he was before he started the treatment.  I only hope this is not a permanent condition.
Based on his experience, I would strongly recommend that someone who has cirrhosis who has had any bouts of hepatic encephalopathy and esophageal varices, think very carefully before starting this very strong treatment. It is extremely difficult and very hard to tolerate. As you see, my husband gave it his best shot but now had to stop because of the damage it was doing.
The final "kick in the teeth" - his 4 week blood screen for Hep C came back negative (<43).
Best Answer
163305 tn?1333668571
I did treatment with decompensated cirrhosis.
It was very difficult and I relapsed.

Your husband should be taking lactulose for the encephalopathy.
It takes a bit to get the dosage right. I was told to take enough to have three soft stools daily.
He shouldn't be eating red meat and should avoid salt and iron.
Tofu, and egg whites are good for albumin.
Stick with simple, fresh prepared food, avoid processed food, mostly due to salt content. Read all labels.

Now, post transplant, I'm doing treatment and its going well.
Hang in there.

Good luck,
OH
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Avatar universal
Eureks
I read with great sadness of your husband's passing. Though I don't know you I believe I know a little of what you both must have gone through these last five years.  It's unimaginable to me that we couldl be in this situation another four years! You have my deepest sympathy. He was a very lucky man to have had you by his side throughout this terrible illness.

Unfortunately, my husband had to stop the Xifaxin as he was allergic to it. That is why they gave him the neomycin. It only took five days of treatment for the damage to be done. Thank God his kidneys rebounded.  They are still debating whether or not he will need a kidney transplant as well.
My guy feeling is that he doesn't as he never had kidney issues prior to this issue with the neomycin. What I've learned as we can not just assume the doctors will take the right steps and we should question everything.
This mistake might have cost him his life. That's when we decided to have him evaluated in another state. We just can't wait it out anymore hoping for the best.

Thank you for your response.  I wish you the best.  Know that though I don't know you, I care and wish you the best at this time of loss.

Nan
Helpful - 0
419309 tn?1326503291
Thank you so much for coming back to update on your husband's situation!!!

I know what it's like going through the anemia, the episodes of encephalopathy... but you both made it through, and what WONDERFUL, terrific news, that he remains UNDETECTED !!!  Oh, glory be to miracles... words cannot begin to express how happy I am for you and your husband, nan... your husband may never have to fight that treatment battle again!!

Neomycin is contra-indicated in a patient with cirrhosis, and a TP center should know this... good that your husband is seeking evaluation at a second TP center if the first administered inappropriate antibiotics -- certain 'safe' medications can create dangerous toxicities in someone with serious liver disease, and I'm sorry to hear that your husband went through all that, but I'm glad he came out of it okay.  Generally, hepatic encephalopathy (HE) is managed using Lactulose in combination with Xifaxin -- many other antibiotics should NOT be used in cirrhotics, as evidenced by your husband's case.  A lower MELD is also excellent incentive if you have the means to travel.

Not having active virus greatly reduces your husband's risk for liver cancer, but he should all the same follow up with routine surveillance (AFP every three months and imaging every 6 months, as liver cancer is still a risk with cirrhosis), but much less likelihood of him contracting HCC now with his status!  Unfortunately my husband passed away less than two weeks ago due to liver cancer despite a grueling five-year battle -- getting rid of hcv can gain people not just months, but a lifetime!  

I'm so glad that you came out the other side feeling like it was worth it, and I add my encouragement to yours to others on treatment:  hang in there and kill that virus!  
Helpful - 0
Avatar universal
Hi Eureka / All
Much has happened since my last (November) post. Sorry I have not found the time to get back here but I feel its important to update you on what's been happening.
My husband has been hospitalized a total of 5 times since November 1st with chronic anemia and hepatic encephalopathy. He has received several blood transfusions over these months as his hemoglobin remains unsteady.  He also developed a serious kidney problem as a result of being given neomycin to treat the encephalopathy around Thanksgiving. His creatanine reached a high of 5.4 abut thankfully it improved before he needed dialysis. He never had kidney problems before. (Most recent result has creatanine at 1.65 so that crisis is over).

I often asked myself given what he is going through, was the 5 weeks on the Triple C treatment worth it?
Well, this is the good news - I have to say "YES"! He was only on it for 5 full weeks and had to stop. Yet, here we are 3 months later and he is still undetectable. They did a more sophisticated testing in January and not only was he <43  but the results came back  <5!  

We are in another state now waiting for his second evaluation for liver transplant. Hopefully he will be listed in a month and a transplant will follow soon thereafter as they transplant here at a much lower MELD score than in NY.  Doctors say he has a 70% chance of not having the Hep C reoccur after transplant  if at the time of transplant he is still undetectable.  

So for those of you who are on Triple Treatment for Hep C, hang in there!
You just never know how things will turn out. Who would have thought he would still be undetectable 3 months later after only 5 weeks of treatment?

We don't know what will happen but we feel he already gained these 3 months at least of the Hep C virus  not attacking his liver further and  possibly causing liver cancer.
What a blessing!
Nan




Helpful - 0
317787 tn?1473358451
Dear Nan, so very sorry to hear about your husband I hope that he is doing better now.  
Dee
Helpful - 0
Avatar universal
I am back on this thread to update you on what's still happening to my husband three weeks post triple Hep C  treatment. If you recall from the beginning of this thread, after 5 weeks of strict adherence to the treatment with Incivik, Peginterferon injections and Ribasphere capsules, my husband ended up in the hospital with dehydration, anemia and hepatic encephalopathy on November 1st.  On the 4th, after 7 IVs, he was given a blood transfusion because his hemoglobin was a 6.2, then discharged.   He followed up on the 10th  of November with his hepatologist. She noted he was retaining water in his legs and belly and warned him about sodium intake.  After several days the swelling disappeared, but I noticed a couple of bizarre behaviors which indicated to me he may be on the road to a relapse to encephalopathy.  I took him to the ER on the 17th and after 10 hours there, we all agreed he was okay to go home. He followed up with his doctor the next day and all appeared fine.  The very next day on the 19th, I went out for a few hours and returned to find him encephalopathic. I upped his lactulose for the next 24 hours but saw no imporvement in his condition so I once again took him to the ER. This time he was admitted.
He spent the next three days there and was discharged the night before Thanksgiving.  
They ran 2 ultrasounds to determine if there was any internal bleeding (none),  They did a chest extra to check for infections (none).  I questioned his hemoglobin count which I saw had steadily decreased from October 27 through November 10th. At the time of discharge it was 8.2.  They said they would not transfuse him as given his varicies, they will not transfuse unless its below 7.  They warned me this could reoccur and I needed to watch him.  It will probably take months for him to rebound. Meanwhile they put him on neomycin (antibiotic) as he is allergic to Xifaxin.  Its been s few days and I think its helping but they warned me that he needs his blood checked within the week to make sure his kidneys are okay. There was some damage as a result of the treatment.
They have come to the conclusion that this is the ongoing results of the preinteferon shots he  took for 5 weeks  and it will take time for his hemoglobin level to increase.

I hope his story will help someone with advanced cirrohsis who is doing  well as my husband was to consider carefully whether going on this treatment is worth it.

Best to all.
Nan


Helpful - 0
Avatar universal
Thank you so much for your response. I am so very sorry to hear that your husband has advanced liver cancer. I wish him only the best.

This is my biggest worry now that he was unable to tolerate the Hep C treatment. I ask myself "Will his disease now progress to cancer?".  I am
trying to help him get a transplant as soon as possible because of this.
But I worry if its fair to put that kind of pressure on his son who lives out of state.  No easy answers to these questions.

I will keep you husband in my prayers. A kind hug from me.  Nan
Helpful - 0
419309 tn?1326503291
I am very sorry that your husband was unable to tolerate treatment, but I'm so very pleased to read that he's doing better now.  For cirrhotics verging on or in active decompensation, treatment definitely has its risks; unfortunately, no one can predict each patient's tolerance level and the end result.  At least  you and your husband know that he gave it his best shot and can move forward being at peace with that knowledge.

My husband started hep c treatment with Class A cirrhosis, and though he was able to "tolerate" treatment, it was very hard, and even though he continued treating for 137 weeks in hopes of getting rid of the virus it came back within 3 months after he stopped.  Unfortunately, he is not a candidate for transplant as he now has advanced liver cancer.  I know how hard it is, how there are the good days and the bad days... know you're not alone, and hang in there.  

Being in the NY area and having options of living donor transplants is absolutely something you should certainly investigate.  I hope your husband is able to get his transplant soon.  OH is a great resource, as her daughter was a living donor her, and there are also a few members here like her who are knowledgeable about transplants having been through it themselves.  

Wishing you all the best, nan, as well as your mom and your husband.
Have hope, stay strong, and sending you a hug.~eureka
Helpful - 0
Avatar universal
Sorry I have not responded sooner. My mom had a bad fall last week and is now in rehab. When it rains it pours!
My husband is doing better as you predicted. He has been taking his lactulose three times daily and his encephalopathy and residual brain fog from the Hep C treatment has pretty much subsided. Unfortunately he has started to retain water in his feet and belly and the creatinine levels are still elevated  (1.89).  He is watching his diet and salt intake better. He also has had periods in the day when he is breathing hard.  
We are thinking about approaching his son about being a "living donor".
I'll start another thread on that as I have some questions.

Thank you all again.  You have been a wonderful support for me.
Helpful - 0
163305 tn?1333668571
Nobody told me back in 2006 when I started treatment that I was too sick.
However, I'm not sorry I tried. It would have been hard to have a transplant without thinking I'd tried everything else first.

Some of us post transplant do better then others.
I'm down to the absolute minimum of meds and have had no rejection episodes.
Research is ongoing for liver transplant recipients to be immune suppression free.
My heptalogist tells me he's had some patients go off of the immune suppression meds altogether.

He's also had patients 20 years out who've had no problem from hep C.
Obviously, that wasn't my situation.

Good luck,
OH
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Avatar universal
so sorry to hear about your husband's experience.   i am also experiencing cirrhosis with severe portal hypertension and grade 1 esophageal varices. i am in my six week of triple therapy using telaprevir and was undetected at week 4. my ALT is in the normal range for the first time in 3 decades. i would very much like to have waited until the interferon free treatments were approved, but had no choice.   about 200 compensated cirrhotics were treated in the clinical trials with telaprevir and as far as we can tell, none of them died from the treatment.  you and your husband did what you needed to do, and you gave treatment your best shot.  i am sorry it did not work for you.
blessings
eric
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Avatar universal
That is wonderful for your husband. I wish him the best of luck.
My husband's doctor thought it best to start right off with the three tratments at once. In hindsight, perhaps not the best way to go. Please keep us posted on his progress. I think this information will be very useful to others in helping them to decide which way to go.

Nan535
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Avatar universal
I'm just wondering if the Victrelis is easier on cirrhotics.  My husband has cirrhosis and was diagnosed with it 7 years ago approx.  He has had to have varices banded and has ascites.  He is taking his 8th shot today and Vic was started after 4th week.  He is anemic and waiting approval for procrit but appears to be handling it all very well.  He didn't have a lot of additional SX when starting Victrelis.  
I don't know if this will turn out to be valid or not but thought I would add and anectdotal experience. He seems no worse off than when he has done
SOC and is in some ways, better than in the 3 prior TX attempts.  He also had a 2 log drop at 4 weeks with just SOC and he'd never had anything close to  that before.
Don't know what it all means but it goes to show you that you just never know. He is taking the Sam-E/TMG/B complex protocol that has been studied, and he'd never done that before.
Ev
Helpful - 0
184420 tn?1326739808
definetly get listed in another state, i have a friend from NJ/NYC area she moved to florida for that exact reason a year ago, was just transplanted 2 weeks ago...
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Avatar universal
Thank you to all who posted in response. You have all helped very much.
It was such a disappointment for us both when we realized he had to stop treatment. I just sobbed (he doesn't know this of course). He wanted to try to kill this virus before the transplant so that he wouldn't have to deal with it afterwards (in addition to the anti-rejection drugs he will need to take for the rest of his life). We live in NYC and it will be a long wait for a transplant. We were hoping we could buy him some "healthy time".  But his latest blood results showed he was becoming more anemic, and it was affecting his kidneys.  He was also severely dehydrated ll from the week and a half of vomiting. In hindsight, I knew in my heart it was taking too big of a toll on him.  So that's why I posted this. I now wish his doctor had just told him/us that given his advanced liver disease  he probably would not be able to complete the treatment. We were warned of how "difficult" it would be and the many possible side effects but I don't think we were told
that he probably wouldn't be able to complete the treatment.  Don't get me wrong I don't think the doctor did anything wrong. I'm sure he wanted him to succeed as much as we did, but as the specialist with experience I think he needs to be the practical one and just put the cards on the table.
I think it is worse to have gone through it, come up with a good result and then have to stop, than never to have started in the first place knowing he was too advanced to get through it..
  He is doing all the right things so hopefully with time he will bounce back.  We are going to look into plan B now which is getting listed in a state where he won't have to wait so long for the transplant.
Thank you all for your support. God bless you and may you all be healed soon.

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Avatar universal
I've read your posts several times today.  My heart goes out to you and your husband, and I don't know what to say.  It sounds as though he really had no other option than to try the new triple therapy without being able to qualify for a liver transplant at the time that he started the triple therapy.  It sounds like his choice was to wait, knowing that his liver disease would progress rapidly, and symptoms of end stage liver disease would progress, or try the triple therapy in the hopes that it would work.  I will pray that he will be able to get a liver transplant soon.
Advocate 1955
Helpful - 0
1116669 tn?1269143266
Sorry to hear of the adversity your husband and you faced giving it a "shot"...I have cirrhosis with stage 1 varices and have complained about "encepholopathy" (my M.D. is not convinced about my history of the latter). I am referred to as "compensated" because I am quite functional (full time clinical job, performer at night, father, reputation for verbal intelligence). Anyway I insisted I "go triple" because I had to try and arrest this cirrhosis before it defeated me. I had to abbreviate the Incivek at 9 weeks because of renal (directly caused by the tx., rash, and anemia) but I did come up undetectable 3 times and will continue the Inter/Ribo tx. to support the my goal of SVR.....The therapy (especially the Incivek) was holding me up with it's punches. I still struggle with low hgb, low abc, and high creatinine form the dual therapy.......But maybe.....just maybe: My liver won't continue to be a picnic for the Hepatitis C virus......Please squeeze your husband's hand for me for a moment. I admire his courage. d
Helpful - 0
446474 tn?1446347682
I am sorry to hear about your husband's complications from treatment. Glad he is recovering.

FYI "Portosystemic Encephalopathy" is "Hepatic Encephalopathy" and is not "brain fog" as it is understood by people treating with anti-hepatitis C drugs as I have told you before. A complication that most of us with hepatitis C and decompensated cirrhosis (ESLD) suffer from to one degree or another. Varices are also a complication of cirrhosis we all suffer from too.

Only a transplant center would treat someone with decompensated cirrhosis. So normally this would not be done by doctors without the resources available at a transplant center. I can't recall anyone on this forum ever being treated for hepatitis C with extensive End-Stage Liver Disease. Of course for someone who's liver is so damaged there is always a chance of treatment making the patient's condition worse or cause the liver to fail which is why they should always be "listed" at a transplant center before starting treatment and monitored closely.

Hepatic Encephalopathy is a temporary condition were toxins unfiltered by the failing liver reach the brain. With medication his condition will improve with time. And when your husband gets a transplant his thinking will be clearer than it has been for years.

Good luck to both of you.
Hector
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Avatar universal
As someone who is in the middle of triple treatment I understand how very toxic this regime is.  I now wish I waited until less toxic treatments were available but then my liver is good and i had the luxury of choice.  He gave it his best shot.  After all it's the first new tx for HCV in 15  yrs.  Too tempting not to try.  I hope he slowly will adjust and return to pre treatment cognitively.  From my experience it may take awhile since the riba stays in the system awhile.  It should get better.
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