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Sabrecat,
I can’t directly answer your questions but here’s what I know.
Q2
In the days of interferon it was also thought of that people who did not reach SVR might be put on a ‘maintenance dose’ indefinitely to protect their livers until a cure came along. It was tried but without much success. I don’t see why it couldn’t be tried with the DAAs too.Q3
Again in the days of interferon, it was thought that there might be a reliance on the immune system to finish the job and get to SVR. For a while it was theorized that svr would not be possible without interferon, for this reason. So when the first svrs were achieved without interferon it really revolutionized that thinking. It was then theorized that if a person became resistant to all DAAs then interferon would once again become their only option. I don’t know how it goes from here. We’ve had an ‘arms race’ with bacteria and antibiotics which the bacteria are on the verge of winning. We are just starting an ‘arms race’ with viruses.There was a guy on medhelp who had HCC. He got a liver transplant and he got to SVR with the DAAs. The most important thing about his story was that he had a fantastic medical team at the transplant liver centre who got him through all kinds of complications. Hopefully it will not come to that for you, but that’s what you need if you don’t get to SVR.
dt
“The government hasn’t really wanted to know either”
Absolutely. While paying lip service to the concept of screening they’ve been quietly thinking – good heavens, we can’t afford to treat the people we know about, so what the hell are we going to do with all the people that the screening turns up?
For this reason, enhanced screening will only take place hand in hand with the availability of the new drugs. Countries still rationing the DAAs are not going to improve their screening any time soon. Which is SO WRONG. A person who knows they have hepC has the choice of leading a liver-friendly lifestyle until they can get treatment. Their condition can be monitored. Their life can be saved before it is too late.
I think that hepC screening needs to become a lot more sophisticated, technology wise and how it is administered. Nobody wants all the rigmarole of getting enmeshed in the medical services, and for good reason. The technology needs to develop a cheap test that can be administered on the spot and the results given right away. The setting for the test could be the same as for a flu jab or a diabetes test – the local pharmacy for example. No questions asked. The choice to have it done anonymously. A counselor on hand by request to interpret the result and advise.
I think it is about time that a fresh wind blew all through the way that hepC is dealt with. I hate how it is dominated by ‘specialists’ and takes place inside dismal clinics and hospital settings, how people are given what can feel like an inquisition about their situation. It is time that the more straightforward cases of hepc were devolved to GPs and treated by them from start to finish in the community, maybe with a specialist nurse out of a hospital. I’d like to feel like just a normal person going to my GP for a normal illness which he can’t catch from me so long as he stays away from my blood. This will happen in time I think, but not soon enough for me,
dt
There is one way to get tested for people who do not want to walk in to their doc or clinic and ask.
You can donate blood.
All blood donations are now screened. If there is something wrong with your blood you will be notified. If it is fine then all that goes on your medical record is that you donated blood.Mike, very courageous of you to ‘come out’ about it. That certainly helps to raise awareness and hopefully bring more people to get tested.
However not everybody feels ready for this level of disclosure. It is understandable if a person does not want to go and ask for the test because they might be asked awkward questions about why they think they might have hepC.Nobody should feel that they need to disclose anything they do not wish to, in order to get their blood tested for hepC.
dtAs in the article that Mike posted, enhanced screening would seem to be one of the cornerstones required for hepC eradication.
Routine screening is already carried out for breast cancer and bowel cancer in some populations, so how hard could it be to have routine screening for hepB and C, at least for the babyboomer generation (born 1945 -65), and preferably for everybody.I believe that testing for hepC at the moment is entirely voluntary, which means that if you don’t suspect you have it and you don’t go and ask for the hepC antibody test then it will be missed, possibly until it is too late. My hepC was missed when I went to my doc complaining of feeling tired. My bloods all came up within normal limits and that was that. Hepatitis was never mentioned. That I found out at all was a complete fluke. My partner signed up for a wilderness expedition and agreed to have medical checks before he went. Unbeknown to him, the hepC test was one of the checks and it came up positive. BIG shock for both of us, but may have saved both our lives. I was then informed and went to my doc and asked for the test specifically.
After that happened, I contacted people I thought might be at risk. One person went to their STD clinic and asked to be checked ‘for everything’. He was duly checked “for everything’ and all came up clear. So I asked him if he had confirmed with the doc that they had checked for hepC. He hadn’t. On return to that clinic he found out he had NOT been tested for hepC. He had to ask specifically for the test. Asking ‘for everything’ did not get it done.
I cite these examples from my own experiences to show how utterly easy it is to have hepC and for it to be missed. Leaving the test as simply a voluntary test for a person to ask for if they think they might have hepC, DOES NOT WORK. People don’t suspect they have it. Or they assume that if a doc takes their blood then it will automatically be found. Or they assume that if hepC is indicated then the doc will suggest the test. But hepC very often does not show symptoms which indicate it, and many people have it who have never had a so-called risky lifestyle.
I’m willing to bet that this poor woman who I knew had never even heard of hepC, let alone suspected she might have it. Or she might have seen a call for testing on an ad on a bus stop and never in a million years associated it with herself. Routine mass screening is required, and the message to get tested needs to be put out there in a much more effective manner so that it reaches people like her.
dt
I hope so too LG. You would think that in this day and age the medics would have a handle on it but I wonder. It has set me to thinking. How many of the undiagnosed are dying still undiagnosed? HepC just seems to slip through the cracks, again and again. How many opportunities are being missed to trace the contacts of those people and test them?
dt
Hi Coral,
Yes, I am appalled that ifn-based tx is still being handed out without the IL28B test being done. NHS UK is still not doing this test as far as I know. It is not the only predictor of SVR but it does have bearing on the outcome. So people with an urgent need to treat will probably still do so regardless, but people who could wait might be advised to wait if ifn is their only option.
For people like me who have had a viral breakthrough, I nearly hit the roof when it was suggested that I had been non-compliant with the tx. To be fair, the nursing staff have to ask that question. But they shouldn’t blame the patient for non-compliance when their genetic marker already indicates a poor outcome. That is unjust and adds insult to injury.
For people who do get the IL28B test and are not a CC, I think that they are entitled to argue against an ifn-based tx being appropriate for them. If the medical provider COULD recommend a DAA tx but is choosing instead to offer an ifn-based tx then you have an argument for getting the DAAs. A lot of money is being spent on ifn-based tx for CT and TT people for whom a poor outcome could be expected. This does not make any financial sense for the provider and could save a lot of heartache and suffering for the patient. I have to wonder if the IL28B test is deliberately not being done by some medical providers precisely because they do not want their patients to come up with this argument and make them pay for the DAAs.
dt
“I’m sure it will be fine, but let’s test it to provide reassurance.”
Package with test sample posted today airmail to your PO 391.
I am already feeling considerably reassured now that Rachel has provided an explanation and vouched for the lumpy stuff being just as good. Very helpful that you contacted her about it thanks.
By the way, I later realised that I had quoted the wrong batch number in this thread. Have enclosed a copy of the COA that came with my sof, with correct batch number.
dt
Doc Freeman –
What should be put on the package customs declaration for this one sof capsule I am sending for testing?
What carrier works best from UK for Tassie? fedex? DHL? UPS?
dtLife – So your sof changed texture after time. I received this package in September but have just opened it now. Maybe, as you say, it gets more lumpy after a time. Anyway, we’ll see what the testing shows.
dtHi Doc and thanks for the help. The Mesochem batch number of this sofosbuvir is BN15057157F, date 2015-8-13.
I presume I should send the sample to your GPO Box 391 address.
Will post immediately.
dtHi Mike,
My powder came lumpy directly on opening the foil pack. Interesting that yours was not lumpy.
I stored it in a dry place with silica gel sachets at 70C, so no way it got lumpy with me. It’s not humid either where I am.Yeah, I guess I just have to do some experiments. What’s a few lumps to us pioneers, eh?
dt
“Incidentally, the clinic’s response to this was along the lines of ‘you can’t relapse while you’re on therapy’. The actual words the nurse used were “We know you didn’t take the interferon, you might as well tell us”.
Hi PKQ,
This nurse would be WRONG. You don’t get viral breakthroughs on Harvoni but people can and do get viral breakthroughs on interferon-based therapies.
There is a genetic marker called IL28B which is one of the predictors of success on ifn-based therapies. If your IL28B is a CC then your chances are good. If it is a CT then your chances are below average and if it is a TT then don’t even bother, you could be a null responder.
I have long thought that anybody receiving an IFn-based therapy should test this marker before starting. I sure wish it had been known about before I did my first Ifn-based tx. I am CT, so I wouldn’t have done the tx if I had known that. Private genetic testing has come way down in price and this test is now accessible, at least in US and UK.I should probably stress that the IL28B test only applies to ifn-based therapies, NOT TO THE DAA’s.
It indicates how effectively your body will use the interferon to clear the virus.I have had 2 viral breakthroughs. You go from ‘UND’ to up in the 100,000’s within a few days and the sky is the limit from there. The speed of viral replication is astronomical and shocking.
Just to be clear, a viral breakthrough is when the virus resurges from UND while you are still on tx.
A relapse is when the virus resurges after you finish all the drugs.dt
One of my best kept secrets is Coconut Oil, only natural source of medium-chain triglycerides except for mother’s milk.
Read about it here:dt
GAJ – I hear your advice about getting expert help but don’t worry. My long-suffering doc is in fact an expert of long standing experience.
I am just not the type to swallow any advice whole. I have to do my own due diligence. Well, I figure that at the end of the day it is MY body and MY life at risk so I better understand what is going on.
dtI have now had a good look at these links and if I am understanding them correctly then I think I need to set the record straight.
The decision support tool shows, for a person genotype 1b, F0-F1, failed protease inhibitor+ifn+riba, that led+sof for 12 weeks = 98% SVR. It does not recommend 24 weeks for the led+sof combo. This is consistent with the Gilead trials for people who are tx experienced with a protease inhibitor.
*** In other words, my suspicions that Gilead fudged the duration of the led+sof combo have been unfounded, according to these recommendations. ***
For the dac+sof combo it is another matter. dac+sof does get a duration of 24 weeks with a 90% SVR outcome, obviously inferior to the led+sof combo for this cohort of people (protease experienced).
So that is a somewhat surprising find for me but hey, who am I to argue with it. Obviously somebody somewhere has formulated these recommendations for a reason. It would be interesting to know those reasons. One presumes that there were trials done on the dac+sof combo. The only trials I know about were the phase 2 trials done before Gilead rejected the BMS dac and decided to go with their own NS5A, ie. led. True enough, I believe that those trials were done for 24 weeks. The progress of dac has always been hindered by the lack of trial data after the split with BMS (except for geno3).
Anyway I am happy to get some clarity on this.
dt -
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