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Hep C Discussion Forum -> On Treatment -> Afraid of relapse
Post Info TOPIC: Afraid of relapse
mallani


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RE: Afraid of relapse
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John,

Our posts must have crossed. OK, HepC from blood transfusions in 1991. So, why the Ursofalk? It has no place in HepC treatment.

I hope you've been told to stop the Silymarin while on Harvoni.

I disagree with 'Ribavirin goes well with fat'. I would avoid bacon- during my last 48 weeks of Ribavirin, I couldn't touch it.

My Hb dropped to 7.2 during treatment but I stayed on 1,200mg/day for the full 48 weeks. Best of luck.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
SickPuppy


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Matt Chris wrote:

Hey John 

Welcome to the forum, you have found a good place with members who give accurate insight in all things HCV.

I see no reason why you should not have a plus 95% chance of clearing with the 12 week protocol with Ribavirin. One of the most important factors is compliance with the meds on a daily basis. Because this new HCV protocol is all oral the compliance is much higher because of less side effects. The Ribavirin will be your biggest challenge but its only 12 weeks and the doctor can make adjustment if necessary . BTW  what is your daily mg dose 1200 or less?

Hoping all goes well

matt  

 

I'll take them religiously. I have been taking 3 drugs (Propranolol, Ursofalk, Silymarin) 3 times a day, every day, for the past 14 years. I rarely missed a dose so I don't plan on missing any Harvoni doses. With Ribavirin, I guess it's only up to me to a certain point. I was told point blank I will be reduced or taken off Ribavirin if my hemoglobin drops too low. If it wasn't for the doctor to force that reduction, I would go with Ribavirin all the way, regardless how low hemoglobin drops. This is my only chance to clear.

Yes, I'm on 1200mg a day. I just finished week one and didn't have any SX yet. Well, I did, but I don't know if they are from the TX or just business as usual, since I've always had nausea, headaches, fatigue and lightheadedness.



__________________

GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L 
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present. 

21/07/2015 - TX start - Harvoni + Ribavirin 1200mg 12 weeks.
mallani


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Hi again John,

I have just seen your other post where you mentioned you were taking Ursofalk. That's only used for Primary Biliary Sclerosis which is rare in children, particularly males. Are you sure your liver problems and varices are from HepC? It seems you may have a more complex issue eg congenital bile problems.

I'd really want some information from Gilead if you're still taking Ursofalk, together with Harvoni. Sorry to ask questions, but it all sounds strange. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
SickPuppy


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mallani wrote:

Hi John,

What a strange story. To have varices at age 11 must mean you were infected at birth. To progress to cirrhosis and bleeding varices in 11 years is very unusual. Even with banding and propanolol, to survive another 15 years is amazing.

With a normal Bilirubin, Albumin, no ascites or HE, your CTP score is 6 (if your Prothrombin Time is raised, or 5 if it is normal). That is CTP A. The CTP A/B score does not exist.

A Fibroscan score of 16 kPa is consistent with cirrhosis. Your nurse should be able to feel your enlarged liver and spleen.

Your MELD score of 14 is fine, and this is classed as low.

Ribavirin will only affect your Hb. Do you know your Hb at start of treatment? Best of luck.

 

Thanks for the to-the-point reply. I calculated all of that and I got the same results as you but a second opinion is re-assuring. Also, please don't say surviving 15 years is amazing. It makes me feel even more sick.

I didn't just survive. I lived in relative good health, had an active life, finished college, a master's degree and moved to another country and now happily employed in the City (London). All with a decompensated liver... 

I was infected at age 2, through a blood transfusion. I had leukemia at age 2 and needed blood transfusions constantly. The survival rate and treatment options at the time were... slim. Think a triple dose of interferon - and then some, but worse.

Any way, my liver was worse 15 years ago than it is today... for some reason.

I have been on three things since decompensation: Propranolol, Silymarin and Ursofalk. I immediately got better then after being put on these three. I was also told to go wild with food and eat anything and everything I feel like eating, especially if it's meat. I love meat, so that wasn't a problem. I've been eating fat pork and bacon almost everyday since then. I definitely feel good after eating that.

My hemoglobin was 15.8 a month before the start of treatment - but I wanted to eat 'healthy' on the treatment so I did for a month before - the day I started, my hemoglobin was 14.9 and platelets were 80. Needles to say, I went back to my bacon-based diet. Especially when I was told Ribavirin goes well with fat.

I think my hemoglobin will drop to 10 and I'll be anemic and dizzy, but that's alright since I'm used to walking around with 11 hemoglobin.



__________________

GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L 
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present. 

21/07/2015 - TX start - Harvoni + Ribavirin 1200mg 12 weeks.
Matt Chris


Guru

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Posts: 1782
Date:
Permalink  
 

Hey John 

Welcome to the forum, you have found a good place with members who give accurate insight in all things HCV.

I see no reason why you should not have a plus 95% chance of clearing with the 12 week protocol with Ribavirin. One of the most important factors is compliance with the meds on a daily basis. Because this new HCV protocol is all oral the compliance is much higher because of less side effects. The Ribavirin will be your biggest challenge but its only 12 weeks and the doctor can make adjustment if necessary . BTW  what is your daily mg dose 1200 or less?

Hoping all goes well

matt  



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
mallani


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Posts: 3398
Date:
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Hi John,

What a strange story. To have varices at age 11 must mean you were infected at birth. To progress to cirrhosis and bleeding varices in 11 years is very unusual. Even with banding and propanolol, to survive another 15 years is amazing.

With a normal Bilirubin, Albumin, no ascites or HE, your CTP score is 6 (if your Prothrombin Time is raised, or 5 if it is normal). That is CTP A. The CTP A/B score does not exist.

A Fibroscan score of 16 kPa is consistent with cirrhosis. Your nurse should be able to feel your enlarged liver and spleen.

Your MELD score of 14 is fine, and this is classed as low.

Ribavirin will only affect your Hb. Do you know your Hb at start of treatment? Best of luck.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
SickPuppy


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Thanks for the kind advice. I've done what you asked and filled in my signature with my latest results (taken the day I started treatment). I'm mainly afraid of relapse because of the state of my liver which is quite cirrhotic. Still half functional, but cirrhotic.

I'm mainly interested in others in my position and also interested in people who did Harvoni + Ribavirin. I'm interested about their baseline and week 2 or week 4 results especially (differences in platelets/hemoglobin mainly).

My main concern is that I will be taken off Ribavirin due to anemia and then I'll really be in trouble regarding SVR chances. I know it did not seem to make a difference in the trials, but it did for cirrhotics. Any increase even in one percentage point is a higher chance for me to get to SVR.

I really doubt the 96-97% SVR chance. Not based on what I've seen online. Real-world SVR seems to be 15% lower across all regimens.

 



__________________

GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L 
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present. 

21/07/2015 - TX start - Harvoni + Ribavirin 1200mg 12 weeks.
Tig


Admin

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Posts: 9284
Date:
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Hi John,

Can you tell us a little more about your situation? If you have time to fill in your signature section with some basic info, it helps us know a bit more about you. Things like genotype, are you a 1A or B, and what's your viral load pre treatment? You can add things like being Tx naive, the date you started, etc. Look at some of the info left on other posts and you'll see what I mean. If you need some help figuring it out, go HERE for some info. There is also some information on the abbreviations we use here.

I would do my best to not worry about failure. Harvoni w/wo Ribavirin is extremely successful. Both 1A and 1B have success rates of 97% and higher for people w/wo cirrhosis. Those are the 12 week rates of success for people that are treatment naive. People having failed previous treatment are supposed to be given 24 weeks. If you haven't seen the Gilead website and the Harvoni Monograph, you can go HERE to see it. It's technical, but provides just about everything you ever wanted to know about it. I can direct you to page 38, Table 16 for the ION trial results for your situation. The real world results indicate those numbers are accurate. You are taking the recommended length of treatment. They are finding now however, the rates of success are essentially equal with or without Ribavirin when Harvoni was prescribed. Some like to think that the addition of Riba adds an extra measure of success. It can add to your side effects, so you will likely feel more fatigue, sun sensitivity and sometimes moodiness and a rash can develop. It doesn't happen to everyone, so if you start feeling poorly, let your doctor know. There are many things that can be done to mitigate the side effects and we can also provide you with some personal tips. Just know that it'll be over fairly quickly, far quicker than the treatments just two years ago (Interferon protocols).

So try to relax and don't spend a lot of time worrying about relapse. The odds of it are very rare indeed. Just stay positive, don't miss any doses, eat well, drink lots of water and I mean 3-4 liters per day without fail. (Simple right? smile) It will help minimize the side effects. Of course, you need to plan to take it easy while on treatment, get plenty of rest. Some say they sleep very well while on Harvoni, so let's hope you're one of them! There's a lot of info on these pages and many helpful people as well. If you have any questions, ask away. Use this thread or pick one of the others to fit your question. The search function at the top is helpful and a keyword or two will open an index to a discussion here on the forum. You'll do very well John, I'm sure of it! Good luck....



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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SickPuppy


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I guess all of us have this fear, of course. So I thought, let's have a thread that's sort of "rate my relapse chance" where you can post your situation, and the next posters can weigh in on it, objectively, because it's hard to be objective when you are in the situations.

So I'll start:

TX-naive.
I'm on 12 week Harvoni + Ribavirin. Would have prefered 24 weeks, but who wouldn't?

Sitatuions: I'm young, in my mid-20's but have cirrhosis that has behaved kind of weird which is what gives me the reasons to worry for my chances of SVR.

Weird things: Discovered HCV when I was 11, with an episode of varices bleeding. Had another bleeding episode at 12, another at 14 and another at 15. Had banding and was put on Propranolol and didn't have any issues since then.

Other issues: Occasional swollen ankles, red palms. No other issues as far as I can tell.

Now, all those point to a pretty advanced cirrhosis right? Well, my last Fibroscan was 16 kPa and the ultrasound nurse said she's "having problems detecing any signs of cirrhosis". What the hell?

My bloods put me in a 14 MELD score, a CPT A/B class. AST 70's, ALT 40's, normal range bilirubin and albumin. Don't know my INR. 98 platelets. No HE or ascites or current signs of varices.

So when I say weird is that my HCV was discovered as decompensated, but it now seems I'm in a compensated state... somehow improved. I'm having issues because of this of grasping my chances of SVR. Rate me, we'll find out in a few months, the winner gets candy.



-- Edited by SickPuppy on Sunday 26th of July 2015 10:23:15 PM

__________________

GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L 
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present. 

21/07/2015 - TX start - Harvoni + Ribavirin 1200mg 12 weeks.
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