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cirrhotic to begin triple therapy
So having over the years failed mono (Interferon) and dual (interferon/Ribo) and being diagnosed with cirrhosis nearly two years ago I'm getting ready to try one of the protease inhibitors with the interferon/ribo. While I'm pretty rich in pathology (stage 1 varices, thrombocytopenia secondary to spleen abnormalities, xifaxin for an ambiguous dg. of encephalopathy, borderline anemia, cramps, and depression) I work full time (I'm an RN) play music at night 1-3 times a week, lift weights, have 3 daughters (one becoming a successful actress at 16 yo- on location in Indonesia now- and 3 yo twins so I have a few reasons to live. I have not (I have a dialogic relationship with my hepatologist) decided which protease inhibitor to take but it feels like this will be my "last shot" as affording a liver transplant- if you can even procure one- seems pretty impossible..... So any empirical responses, i.e., cirrhotic patients who tried or are trying the new "triple play". I'm both relieved and apprehensive that I'm getting to try the therapy as my hepatologist was hesitant to chance it with the cirrhosis. Thanks to any. d
As is the norm for me I am a day late and a dollar short (I should change my name) I just wanted to say that I too was diagnosed with early cirrhosis 3 years ago, Tried Roche's R1626 polymerase, inf and riba, clear 6 - 8 wks but relapsed 6 weeks after stopping. I am starting the Incivek, Inf, Riba in about a month. It is scary but like Hector said, it is worth a shot (no pun there) I know I feel like crap most days so hope the tx will help me get some of my energy back and get rid of the cryo I have
I wish you a lot of luck and will try to follow admittedly a little later than the great people who have responded so far. I think I might do a journal just to keep track, it helped me the last time.
Thanks for posting
Dee
love your Fitzgeral quote
I wish you a lot of luck and will try to follow admittedly a little later than the great people who have responded so far. I think I might do a journal just to keep track, it helped me the last time.
Thanks for posting
Dee
love your Fitzgeral quote
Thanks again for the support and I wish you all well too. Regarding courage: I think Fitzgerald said it best: "The sun shone because it had no alternative" . d
im considering triple tx after 3 failed tries with 2x - im registered with transplant clinic but not on the list - last meld was 12 - 15 makes the list in most states but it seems only a privileged few get a transplant with low meld - its best to register with multiple clinics - sad to say that more livers are available in states with no helmet laws - but its still usually much too long of a wait --- at first i was told no more interferon / ribavirin as after a point it can do as much or more harm than good - given that 3x is the best chance yet in hep c tx and 4x ( better in trials than 3x ) might be approved in the near future presents another sticking point - wait or no - after that it may be at the very least 5 years or so before no inf/riba tx is available - after being told i probably wont be a candidate for tx then - my last shot at clearing the virus is now or the very near future --- now the hepatoligist at the clinic says he would agree to one more shot at it which i feel i must take - im not decomp yet but ive experiencing encephalopathy for a long time so its not a given - only an indicator - we are all unique in some ways yet similar in most - best wishes for all
I am always amazed at what courage people have in facing this disease. I admire you and wish you much luck and health on your journey.
Debra
Debra
i cannot add anything to what hector said. i also am experiencing cirrhosis and am planning on starting triple therapy with telaprivir in a few weeks. i will be interested in your choice of PIs. i am sure you know that very few cirrhotics were in the trials with only about 200 in the telaprivir trials. it will be nice to hear about others experiences with triple therapy.
blessings
eric
blessings
eric
Hey I remember you :) I certainly hope this is the ticket for you - I would do everything I could to even try and get some liver improvement as a worse case scenario. You have a beautiful family and they certainly will factor in all your decisions and I applaud you for having the guts to go through treatment for the third time.
I'm going to be praying for a 4 week UND and then downhill from there.
Hector is the cirrhosis expert so you are in very good hands.
Debby
I'm going to be praying for a 4 week UND and then downhill from there.
Hector is the cirrhosis expert so you are in very good hands.
Debby
Hey Hector: I didn't mean for a "labile" depression to be a diagnosis per se but a description of my depression which is labile aka changeable aka not fixed, etc. Obviously depression is a hybrid of ingredients which in my case shuffle and reshuffle. Some of the catalysts are endogenous, some exogenous. I just picked up some Viibryd which is marketed (FDA approved in January and finally available this past July 1st) to have less sexual side effects than other relative antidepressants. It is an atypical SSRI. I will use some- if not all- of your information as a guideline. While I am not naive about liver pathology I am more and more ADDish on an intellectual plane........I did not expect too much of a response to my query so am earnestly grateful to those that took the time to check in. Right now I am trying to get the appointments for a hepatologist mandated stress and eye test prior to beginning treatment and these after another MRI with contrast on 7/20. To give you an idea of my "lively" schedule: On the 20th I'll work the day on an orthopedic floor of a hospital- have the MRI- then go do a big show with my band. After the show I'll come home and video chat with my 17 yo daughter who is on location in Indonesia doing a film with some of the Harry Potter and Social Network actors: and this is not an atypical day for me. Thanks again Hector and all. My best. d
Well Paul, Dennis asked for responses from what I believe will be a very narrow spectrum of people at the moment......it doesn't get much better than Hector so he's in good hands so far.
Dennis - in my limited understanding, treatment for those in your particular circumstances is not that common. I wish you well with this and hope you will keep us posted. New frontiers. Here's hoping.
Trish
Dennis - in my limited understanding, treatment for those in your particular circumstances is not that common. I wish you well with this and hope you will keep us posted. New frontiers. Here's hoping.
Trish
I would have liked to see you get a few more wishes of good luck from the forum dennis.
Oh well, those who know the difficulty of your situation are behind you anyway !
Good luck and keep us posted.
Paul
Oh well, those who know the difficulty of your situation are behind you anyway !
Good luck and keep us posted.
Paul
Hey Hector: You're so encyclopedic! On both solo interferon and interferon/ribo there was some initial responsiveness but my numbers climbed back and the hepatologist discontinued the med(s) 3-4 months into it which I presume would make me a "null" responder. The encephalopathy is ambiguous with my ammonia last at 40. I can't deal with lactulose/enulose working as an RN, performing musician, and negotiating young children so I'm just on the xifaxin. I'm referring to ST memory problems and concentration problems and it was my call rather than the hepatologist to start the xifaxin. My response is as ambiguous as my ambiguous enceph. I've had a history of Lyme and suffer a labile depression which might be responsible for the cognitive deficit. As stated I have stage 1 varices. They are looking at me as compensated because I am still functioning well and pretty muscular from working out........Nevertheless: trusting your stats (which I do) I read myself having a 29% or less chance of clearing the virus and a 10% chance of liver failure on treatment: now I'm definitely depressed. p.s. Yes I have an esteemed hepatologist and strategies to compensate for my already compromised platelet and anemia problems will be discussed- After I have mandated MRI with contrast to r/o lesions, a stress test (no problem i'm sure) and an eye examination. So you think I'm largely reading your stats right? My best. d
Glad you are giving it a "shot". I agree that it is best to try everything you can to avoid or slow process towards a liver transplant. It is very difficult to get one unless your MELD is way up there. At that point you will be so ill you probably won't be able to work anymore due to fatigue and other symptoms.
You said you failed treatment but not how. Were you a non-responder, relapser, etc.? That will give you the odds of the treatment working this time.
You are compensated correct?
Encephalopathy only happens after decompensating. Are you taking Lactulose in addition to xifaxin?
I assume this is a hepatologist that will be treating you? Are you "on the radar" of a transplant center? You are aware that persons treating with peg-interferon and ribavirin have about a 10% chance of liver failure during treatment? You didn't say how low your platelets were. Treatment will cause your platelets to drop further. Does your doc have a backup plan for transfusion of platelets? For anemia?
Is you depression under control? Since you have treated before you are aware the peg-interferon can cause major depression as a side-effect.
Incivek (telaprevir) RESPOND trial data
SVR rates were significantly higher in the 2 telaprevir groups compared with the standard therapy control group:
Prior relapsers: 83% with concurrent start and 88% with lead-in, vs 24% in the standard therapy group;
Prior partial responders: 59%, 54%, and 15%, respectively;
Prior null responders: 29%, 33%, and 5%, respectively.
I wish you all the luck in the world. I hope three's a charm and you stop the progression of your liver disease.
Best -
Hector
You said you failed treatment but not how. Were you a non-responder, relapser, etc.? That will give you the odds of the treatment working this time.
You are compensated correct?
Encephalopathy only happens after decompensating. Are you taking Lactulose in addition to xifaxin?
I assume this is a hepatologist that will be treating you? Are you "on the radar" of a transplant center? You are aware that persons treating with peg-interferon and ribavirin have about a 10% chance of liver failure during treatment? You didn't say how low your platelets were. Treatment will cause your platelets to drop further. Does your doc have a backup plan for transfusion of platelets? For anemia?
Is you depression under control? Since you have treated before you are aware the peg-interferon can cause major depression as a side-effect.
Incivek (telaprevir) RESPOND trial data
SVR rates were significantly higher in the 2 telaprevir groups compared with the standard therapy control group:
Prior relapsers: 83% with concurrent start and 88% with lead-in, vs 24% in the standard therapy group;
Prior partial responders: 59%, 54%, and 15%, respectively;
Prior null responders: 29%, 33%, and 5%, respectively.
I wish you all the luck in the world. I hope three's a charm and you stop the progression of your liver disease.
Best -
Hector
Glad to see you are going to get the chance to try something at last. I'm in a similar position myself and was also diagnosed with early cirrhosis two years ago. It looks as if I will be treating with something new soon.
Good Luck
Paul
Good Luck
Paul
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You might want to check your viral kinetics throughout treatment. Initial viral load, at week 4, week 12, and if you have it week 24. As it is critical to your chances of clearing the virus with DAAs.
Nonresponder: Failure to clear HCV RNA from serum after 24 weeks of therapy.
Null Responder: Failure to decrease HCV RNA by 2 logs after 24 week of therapy.
Partial Responder: Two log decrease in HCV RNA but still HCV RNA positive at week 24.
Breakthrough: Reappearance of HCV RNA in serum while still on therapy.
"29% or less chance of clearing the virus and a 10% chance of liver failure on treatment"
29% would depend on your previous response (as above). Liver failure is anecdotal and I should have said between 5% and 10%. So there is no hard trial data on this.
The way I looked at it for me was...any chance to stop or slow down progression of stable, compensated cirrhosis verses decompensated ESLD is worth it. In the worst case you end up needing a transplant sooner rather then later. The other option is getting progressively worst over many years, becoming disabled and unable to work, suffering with the complications of ESLD all while waiting and hoping hoping to get a transplant. I have already been unable to work for 2 years. After transplant recovery if all goes well could be another year and then treatment for HCV another year. I am in my prime money making years and I am helpless in doing anything about it. Needless to say this is not a position anyone wants to be in.
Ammonia -
Ranges vary from lab to lab, and your lab may have a different range for what’s normal. Your lab report should contain the range your lab uses. According to the labs I use, 40 is within norms. The normal range for adults is 15 - 45 mcg/dl. You do not have high ammonia levels unless your lab is vastly different.
Elevated blood ammonia levels are common in people with hepatic encephalopathy, but the level of ammonia doesn't correlated with how server HE is.
You say you suffer from "labile" depression? There are 9 types of depressions list in the DSM-IV, Diagnostic and Statistical Manual of Mental Disorders. What is "labile" depression? Have you been treated or are you still being treated with an antidepressant? Interferon is known to trigger depression in people with a previous history of depression.
Take care.
Hector