Forum Replies Created
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klhilde, as a G3a Ledipasvir doesn’t work for me but gotta love and agree with the
anyway!
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 Chejai,
Your two fibrosis scores are still within the range for same recommended length of treatment so I wouldn’t worry about that.
And VL jumps around all over the place anyway. It was important with the old Interferon Tx but it really only counts for seeing when you reach low/undetectable levels with these new meds. And both your readings are at the low end of the scale anyway.I look forward to hearing your good news tomorrow!
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 Sabrecat,
Being in a similar health and treatment situation to you can I just say that I have every confidence that we will both achieve SVR and remain so.
Particularly given our incentives, both cash and health wise, to be dosage compliant throughout our treatment. As my specialist said “…..at this point I usually give patients a lecture about taking the meds as directed but in your case I guess we can skip that!”
I have also stocked up on vitamins B12 & D and made an appointment this week with my GP for tests just to see if I need an initial shot to get me back up to optimum levels.Any further tumours need to be found and treated as soon as possible for the best prognosis so make sure you are getting checked as regularly as possible. While your occurrence was at least 3 years ago, if it was me I would be talking with my specialist about three monthly scans while on treatment and a period after even if I needed to pay for some myself.
For others who may fail to achieve SVR, while not an expert, my thoughts are that staying on treatment with DDAs is not likely to be optimum. As Paul said, they would need to determine why they failed via testing and then look for alternative treatments such as Velpatasvir instead of Daclatasvir or possibly a three way treatment using Simeprevir (speculating with these suggestions)
There is also discussion that for some Gt3 patients, Interferon plus a couple of DAAs throughout treatment may work well but I know in my case Interferon has basically been ruled out for retreatment due to my IL28B status.
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
LondonGirl wrote:I have started treatment.
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 Stew,
There is a Drug Interactions Calculator linked in this thread http://fixhepc.com/forum/drug-interactions/110-please-check-for-medication-interactions.html
Enter your Sofosbuvir/Ledipasvir combo then ‘next’ and select from the alphabetical listing of other drugs. Nexium is listed as Esomeprazole and the other is just listed as Ursodeoxycholic acid. I just ran those through it and there does seem to be some potential (orange) issues in each case (although they appear manageable) that you should discuss with your doctor or the liver clinic. Sorry, on iPad so difficult to post the report.
Hope this 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
Hi psavic,
I’m not a doctor but biopsies are usually more accurate than fibroscan and changing from F1 to F4 in 12 months would be very unusual. But as you say, you do need to know the correct rating to determine how long to treat. Can you get the fibroscan done again to check that it wasn’t faulty or maybe even an operator error?
But I wouldn’t worry about the viral load, they jump around all over the place and can change a lot in a few days or weeks so a 10 times difference over six months is not unusual and seen by many of us.
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 Stew,
Great to hear you found the generic trail. How far into treatment are you? Or are you just about to start?
Hey Chejai, fantastic news!
Look forward to hearing both your progresses.
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 all,
The below does not relate to the Dr Reddys issue directly but represents my thoughts on some of the prices being quoted here.
Agree about reliability of suppliers being a concern but I also think there are other issues involved. I suspect the prices being quoted are taken from the article linked in this thread – http://fixhepc.com/forum/media-news/530-drug-that-costs-1200-and-sells-for-5-in-india.html
A couple of points about this article:
The drug being discussed is named as Sofosbuvir not Harvoni, so will be cheaper anyway. The min price quoted is as low as $4.29 so not a standard price although there is some speculation that it may go lower with time. That quoted value is the cost if a village of 200 people successfully negotiates directly with the drug company (no middle man or distributor profits) for exclusive treatment for that village. That is, it is a marketing share driven bulk deal not a normal street price and should not be compared with the pricing for buying one treatment for an individual.
Now, it may be that some of the drugs sourced this way end up on the black market at below the going rates but in that case there is the very real possibility that this will result in an Indian with hep not being treated because either someone scammed them or alternatively they or someone else made the difficult decision that feeding the family was more important than being cured.
Just something to consider when discussing Indian prices although I’m sure we would all like to see lower prices worldwide.
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
Given where the convoluted trail I followed led me, they are more than suspect and an outright scam! By the way, looks like their nominated address is probably a car park.
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
While I can’t speak for FixHepC or the Buyers Club, my take on it is that the Pharma’s Market section is not available for public viewing because the feeling is that those who become forum members are more likely to spend some time reading other sections of the forum as well as thoroughly reading all of this section. As a result they will be in a better position to understand that listing in this section is not necessarily a guarantee of the sources listed and that the situation in this section can change over time as more information becomes available. If this section was open to public viewing that brings the risk that people would only look at this area and may take it as being complete approval of all the sources that get mentioned. As I am sure you are aware, that is not necessarily the case.
And for those who are interested rather than just casual browsers, registration is a straightforward and relatively quick process.
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
Like a good party…..and this one sounds great!
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
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
Well, if the new urine test pans out,
then quick tests become a possibility. However, I think after having lived with the virus for a while we tend to forget how traumatic the initial impact of discovery was. So for most people, testing positive is going to be a major event in their lives requiring some support. At least until we get to the stage where the doctors can say “take one of these each morning for a week and everything will be fine”. Regarding the devolving of simple cases to GPs, that appears to be the model we are aiming for in Australia in a few months and with the DAAs it makes sense. I should imagine there will be other counties around the world looking on with interest at what happens so hopefully it all works well.
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
dointime wrote:However not everybody feels ready for this level of disclosure.
dtErr…yes, which is where I fail the public education campaign part of my above speech. While I am now comfortable with telling friends and (most) family my situation and how I aquired it, I’m not ready to become ‘poster boy’ to the world at large.
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
I’m finding that as I tell people about my status. The response tends be “no, not me!” when I mention that most baby boomers have some risk factors even if just from medical practices that while quite good in places like the UK, US and Aust*, just weren’t as thorough and controlled as they are today with the better understanding that we now have. I also believe that a significant part of it is the fear associated with the poor chances of a cure in the past and the high/impossible costs of that cure until very recently. Many people just don’t want to know about something like having this virus where they think they will have no control of its impact on their lives. The government hasn’t really wanted to know either as it had limited means of control which was expensive and the public would be panicked if they thought so many were at risk. So much easier to pretend it doesn’t exist while you can.
oh, and I did the exact same for many years, knew in the back of my mind I had a risk factor but hey my annual check ups were always fine…..until they weren’t. But with the cure rates we are now seeing with DAAs and the pricing of generic versions we really need public education campaigns to find and treat those who need it. The pay back will be immediate and compounding from the reduced future health costs let alone the increased productivity and happiness of those cured.
* and likely many others I don’t have the experience to comment on.
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
