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Riba or not riba?
I have a question ideally for Dr James. I just took my 28th Epclusa pill today and I have an appointment with my GP next week as well as a blood test booked. Hopefully everything is on the track.
What worries me is I have been given 12 weeks of Epclusa only and I have fibrosis F3 (11.6 Kpa) and GT3a. Doing my research in this amazing and supportive forum I discover that the recommendation for severe fibrosis/cirrhosis is 12 weeks Epclusa WITH RIBAVIRIN or 24 weeks Epclusa.
Here are my questions:
If I'm not undetectable next week would be worth it to take Riba half way the treatment
or even if I'm undetectable should I take Riba just to be safe?
Or should I extend my treatment?
I don't mean to be negative and hopefully everything go well next week but the fact that I'm not taking Riba worries me.
Please your opinions/recommendations
Thanks a lot
11.6kPa is less than the 12.5kPa for cirrhosis but, given this is a spectrum you are much closer to cirrhosis than not. As you say, for F4 GT3 patients the recommendations are 12 weeks Epclusa with Ribavirin or 24 weeks without.
If you were my patient I would have discussed this in a conversation like GT3 is harder to treat, it's harder with cirrhosis (which you are close to) so what do you think about Ribavirin?
What country are you in? There are all sorts of rules that restrict what can be used and the options for retreatment also vary. For example, in Australia all I could give you would be 12 weeks Epclusa so the decision here is 12 weeks with Riba or 12 weeks without - there is no 24 week without option. For a patient in Australia, the only way to do 24 weeks without would be 12 weeks PBS funded, and 12 weeks self-funded generic.
All other things being equal I would be happier if undetected at 4 weeks than if you're still detected.
Yes we could add Ribavirin in later. It's probably not as good as earlier, but probably better than not at all. The "probablys" relate to the fact it's not done very often so it's a best guess, rather than something backed by solid research. I know eminent doctors like Professor Ed Gane would add it in if things did not seem to be going according to plan (at least that's what he suggested last time I asked!).
Thanks very much DrJames
I think my options now is to add Riba half way treatment or not to add it. My question is should I add it regardless of my results next week or only if I'm not clear?
This is important in term of timing because if you think I should take riba regardless of the results I can order them right now and start taking them next week.
Answering your question, I'm in Australia but I self funded my treatment. My experience ordering 12 week Epclusa was very good in terms of I got them on my door 8 days after I put my order.
That leads me to another question, do I need prescription from my GP to get Riba? How are Riba's side effects compare to epclusa?
Very confuse right now so I would really appreciate your help
Thanks very much
I've sent you an email about making a quick appointment so we can discuss it.
If it was me I would have started with it, and would add it now regardless. While 22% of people are still detected at the 4 week test, and these people form 44% of the failures, 56% of people of the failures come from people who are undetected, so while being undetected is better than being detected it does not really help that much. If you were still detected definitely add riba, if undetected I'd still be feel happier if you were taking it.
Ribavirin has significant side effects (compared to Epclusa alone) although you will barely get to them taking 8 weeks. It's not as bad as when mixed with PEG Interferon, and some people tolerate it very well. It's about 1/3, 1/3, 1/3 between not too bad, not great and awful in terms of patient experience.
The irritability aka "Riba Rage" is a problem in some people.
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Sounds like you're having a tough time but Dr James is, as you have already found out, right behind you. That should reassure you, as everyone on this forum knows.
I would certainly takes the Riba, potential side effects and all, if I were in your shoes. As with most things in life, anticipation is usually worse than reality.
With best wishes for 2019,
PS Have you ever read 'Love, medicine and miracles' by Bernie Siegel MD? It is about the way positive thinking influences health outcomes but also much more and how, practically, to help yourself. If your view of the treatment you are having is that it will work, you measurably increase the odds that it will. Further, you can minimise side effects of treatment using the visualisation techniques Siegel employs with his patients. R.
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks
PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
Thanks for your reply DrJames
The side effects of Riba scares me because Epclusa has not been pretty so far. More tiredness would lead to inability to do my job and I can't allow that in my life right now. I would prefer extend the treatment if necessary. Too many questions and so little answers.
Looking forward to discuss this privately DrJames
Thanks for your words RSF, really appreciate it.
I'm not sure about Riba yet because of side effects. As you said anticipation is worse than reality so the best thing to do right now is calm down and wait next week for my results.
Thanks for the book recommendation, I will definitely check it out.
Just one more thing, I don't want to sound negative on my treatment outcome. I think this new medicine are a great scientific breakthrough. It just the access to all this information and different opinions is a bit overwhelming sometimes. I really trust my GP, he was recommended to me by a HepC organisation so i have not doubt he knows what he's doing.
Anyways, as you mentioned I need to keep a positive mind in this journey and I will.
Thanks for the support
You are right that it can be overwhelming but you are really working through this to get the best option for you.
I took Ribavirin for 24 weeks so I thought I'd share my experience. My G1 Hep C was particularly difficult to treat . Initially I had 12 weeks of Sofosbuvir/Ledipasvir followed by 12 weeks of Sofosbuvir/Daclatasvir. A few weeks after the end of treatment I relapsed. Only a very very small percentage of people relapse and the treatment options have increased over the last few years.
Pretty much straight away I went onto 24 weeks of the Viekira Pak with Ribavirin. Even though I could have probably stopped the Ribavirin earlier I wanted to make sure that I hit the virus with everything. In comparison to the minimal side effects that I experienced with the first treatment I did have a few more with the Ribavirin. More headaches, disrupted sleep, tiredness, dry hair, dry skin and general blah. However the long term effects of having the virus were mixed in there somewhere so it was hard to separate them. I don't think I had the Riba Rage - no-one has mentioned it anyway.
For me it was unpleasant but manageable and I kept my eye on the end goal. I know that everyone is different and that you have had side effects with the Epclusa however my unscientific advice would be to take the Riba, even halfway through, for the extra SAS troops it puts into the fight and for your own peace of mind.
I am coming up to my two year anniversary of being Hep C free and it is the gift that keeps giving.
I really wish you well. Let us know how you are travelling.
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
my first treatment with Sof/Dac went well with no side effects and I felt great. But some time after end of treatment the virus came back.
Second time around did the same with Riba added. I had the same concerns about side effects because I had the experience with Riba years before when I was on interferon. Still think the stuff is in some ways like a hangover - at least what I remember of one before I had to go on the Hep C wagon. Heaps less so with DAAs. I was using Sof/Dac as well which side effect wise may be different to what you are using?
I tolerated the stuff as best I could, and it is difficult as life and work goes on, but I found it manageable. I am cured now as well and all things equal, the Riba did make the difference.
I don't know what the doctor will suggest to you Riba wise, but I hope knowing that Riba is manageable and others here are supportive, may help any decision you make with your doctor. I like a simple life and just do what I am told.
All the best and hope to see you posting your SVR soon.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
Hi everyone and thanks very much for your support.
Sorry for leaving this post unattended for a while.
UPdate: I was undetected on my week 5 under treatment and after a conversation with doctor James and my GP I decided to take the long way. I'm going to continue treatment with another 12 weeks. Being a self founded patience is hard so took me a while to decide what to do and get the money for it.
Anyone in the forum that have taken the same path? 24 weeks seems like a long time but sometime you have to do what you have to do.
Yes, I have done 24 weeks of DAA's...... it was pretty easy for me, I have seen lots of people do it, adding riba does make it tougher for some people, it did for me but as you say, we do what we have to!
I was third time lucky treating, having 'experienced' 12 months old school interferon then 6 months pegylated + riba. I was at the business end of running out of time when I got my meds from FixhepC and now, I am annoyingly well! It is amazing to feel like the years have dropped off and my life is - before cure, and after. After is awesome!!.
I used to work in the mental health field with a very wise woman, she had bipolar and she would tell people struggling with not wanting to take medication- No one wants to, but some of us need to, and when we need to , and there is a pill that helps, changes our lives- we are the lucky ones. Taking them gratefully, feels so much better than resenting having to take them.
I still have to take a bit of a handful each day, thyroid, blood pressure etc and I do that- tell myself, wow I am lucky. Otherwise it would be a drag- as it is, a gift. I noticed it the other day that I still do- is such a habit now.
Best of luck with yours.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716