Forum Replies Created
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“This will test my determination and pig headedness…..”
No contest Barry! Now finish that vanilla slice and double cappuccino and go for a walk.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Congratulations Wilko, Jorge & Radtek! Lots of good GT3 news here.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Welcome Edna,
As Iain says, there are safe cures available for HCV and you can find out more about the available options here. Please feel free to ask here or via help@fixhepc.com if you have any questions.
I see you had HBV back in the 70s. This won’t prevent treatment but may require additional monitoring during treatment if your HBV was suppressed rather than cleared. So you should ensure you and your prescribing doctor know your current HBV antibody/antigen status prior to starting treatment. Here is a link to some previous discussions of this topic including comments from Dr Freeman.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
As long as he doesn’t try to bench press 250kg straight away I don’t think that should be a problem.
From what I understand and also experienced, exercise and improved fitness is beneficial for cirrhosis assuming it is within done our current capacity. Your boyfriend knows and will be able to feel what he is capable of so can build up slowly just don’t go nuts. I try to do similar but I’m lazy so that resolution tends to get broken too often. 
ops:edit: though I still walk every day
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Sonja,
Smoking is bad for your BF’s liver as tobacco contains many toxic chemicals that his liver will need to process and I would urge him to stop. Having said that, I know how hard it is to give up!
If he can’t do so immediately then e-cigarettes will at least reduce the chemical cocktail he is ingesting and may help wean him off them eventually.Cholesterol balance tends to be thrown out of whack by HCV which may help explain the low HDL but after SVR this is likely to improve particularly with good diet and exercise.
I have cirrhosis and 18 months ago I would become exhausted and need to rest after walking 500 metres to the local shop and back. When I commenced my treatment I decided to do something about that so started excercising. Slow, short daily walks at first but gradually building up speed and length until I can now walk for a couple of hours at a brisk pace…. the improvements to my general health and feelings of wellbeing have been fantastic.
Assuming there are no other medical reasons for not exercising and that he builds up gradually, I believe exercise would be beneficial for your BF. If he does have any concerns then a checkup with his PCP/GP before starting will provide more guidance.http://hepatitiscnewdrugs.blogspot.com.au/2014/11/can-exercise-help-patients-with.html
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Welcome XHG,
As Mnem says, correct treatment will depend on your friend’s HCV genotype and liver status. Twinvir is made by Incepta pharmaceuticals who also make medications for other genotypes. For pricing I would suggest talking directly with Alimul (also known as Parvez on this forum) at the contacts provided above….or via below:
https://fixhepc.com/forum/daa-access/435-incepta-pharmaceuticals-sof-dac-sof-led-comb.html
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Couple of quotes from deep in the paper, including an admission that the data they studied is insufficient to determine long term effects of treatment.
“We chose pragmatically to only assess outcomes at one assessment time point, that is, the trial’s result as provided at maximum follow-up. Most trial results were only short-term results. Hence, our results can neither confirm nor reject that DAAs have clinical long-term effects, which is a further limitation of our present review results, especially because most of the harmful effects of hepatitis C take years to develop.”
“The combined intervention period and follow-up period ranged from one day to 120 weeks with an average of 34 weeks.”
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Vororo,Looking at the report in a bit more detail, it has the following statement:
“Objectives: To assess the benefits and harms of DAAs in people with chronic HCV.”
They then go on to state that they investigated all the clinical trials of DAAs they could discover irrespective of type including “unpublished” and “grey” trials. It appears they also included unsuccessful trials in their investigation of the 51 DAAs they state are involved. So even something that was determined in trial to be unsafe or ineffective against HCV is included in the data?
Reading through the abstract it appears that the investigations actually looked at whether the trials conformed to ideal best practices including allocation of participants by such means as random computer assignment using a “locked” computer and other similar type criteria. i.e. It was a retrospective study (audit) of the methodology of the clinical trials using strict criteria as to what complied with their definition of best practice. This is good! I’ve conducted many similar “Quality Audits” in my industry, they are an excellent means of keeping the participants honest and driving continuous improvement in standards. We can always do better and this review seems to have highlighted quite a few areas where clinical trials can be improved based on their findings of “the quality of evidence is very low” for compliance with their criteria.
However…..we need to remember that the clinical trials under review were to determine the efficacy and safety of the DAA involved against HCV as measured by plasma RNA levels and adverse events at predetermined points during and post treatment. They were not and were never intended to be whole of life studies of the participants health. Out of the 51 DAAs trialled, something like 25-33% have been approved for use with the rest presumably being determined insufficiently effective or safe although it seems the results from these are included in the data used in conclusions of the authors.
Now go back and read the quoted Objective at the start of my post. As far as I can determine these researchers have audited a large number of clinical trials for compliance with what they consider best practice in a clinical trial and found many areas for procedural improvement due to what they claim is “very low quality evidence”. But they have then used that same allegedly poor evidence (including that from all the unsuccessful trials) to extrapolate about the long term prognosis for those taking approved DAAs.
From my perspective, their study approach of investigating procedural elements/reporting of clinical trials does not constitute a meaningful analysis of their stated objective of “assessing the the benefits and harm of DAAs” and thus their conclusions regarding that aspect look to be flawed.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
AST is Aspartate transaminase. Like ALT it is an enzyme that is often used as an indicator when investigating liver health. If you scroll down the wiki below to “Clinical Significance” you will see it is less specific to the liver compared with ALT but still useful.
https://en.m.wikipedia.org/wiki/Aspartate_transaminase
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Done.
During treatment last year I gained about 7-8 kilos over 24 weeks. I did notice I was enjoying the taste of food more
but that I was continually hungry even shortly after a meal. I was also capable of eating a fattier diet (still healthy) than previously which may have had some effect. In my case it took a few months to get back to normal weight but I did seem to lose the constant urge to eat somewhere along the way.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Kitty,
Sorry to hear that you are still having some issues post treatment. Given your weight the medication dose per pound/kilo would have been much higher (almost double) than the nominal average patient weight of 75kg which I suspect may explain your experiences while on treatment. Here is the link that Mnem was trying to provide regarding how long it takes for Harvoni to leave our bodies. As you will see, after 3 months almost everything will be gone and after six even any last traces will have disappeared.
The above explains the rate of chemical change but of course after many years living with HCV our bodies and minds may need time to adjust to its absence and this will no doubt be affected to some extent by the amount of liver damage (fibrosis/cirrhosis) we had. From what I have seen here and through talking with others, people do vary in the speed they recover post treatment with some seeming to bounce back straight away while others do take longer to recover.
We should also keep in mind that many of us are in our 50-60s and may have other age related health issues that need investigation. As you appear to have a good relationship with your current doctor maybe have a chat with them about how they would examine/diagnose a patient who presented with your symptoms if they didn’t suspect HCV?
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
2bornot2b wrote:I only came across the message I’m replying to by chance, as yet again I didn’t receive a notification in my mail, yet I do get them at other times. I know you mentioned how to fix this in an earlier mail, but I’m still none the wiser – any further clues please?
If you look at the below screenshot you will see a blue “Subscribe” button. If you click or tap that it will toggle between subscribe and unsubscribe. You should receive email notifications while you are subscribed (displays as Unsubscribe) to a thread. I’m not sure why you don’t always get notifications but have noticed on another site I visit that once you have one notification for the thread it stops sending more even if a dozen other people respond. After you sign in and read current posts it will start resending notifications again for the first new one which makes sense so you don’t get flooded with emails. I switch off my notifications from this forum as I log in every day so don’t have any experience here but assume the software behind this forum does something similar.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Congratulations Leesa!
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Heatherlou30,
Congratulations on starting treatment.
Here is the Liverpool University drug interactions checker hypelink that Mnem referred to http://www.hep-druginteractions.org/checker
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi 2bornot2b,
Oops……..you caught me out! My only excuse is that I too was still brain fogged when I wrote that last year. Yes, the sign on page still shows after you have entered your password twice, it is a software bug but you will be able to add and save details to the signature panel in the “Profile Information” tab. (I’ve also edited my instructions for future members).
I hope that helps.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
