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  • 21 January 2016 at 2:16 pm in reply to: when can I stop the Riba #9999
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    • Guardian Angel
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    @dointime

    There will be others on to tell you if riba is clinically advised for you. It would help them to know more details, eg your genotype, chirrotic?, previous tx.

    I will just add that a few people do have a fast drop in haemoglobin levels in response to riba. My doc does a blood test at 2 weeks in order to look for that. If this is what is making you so tired then it does have to be addressed.

    dt

    21 January 2016 at 1:51 am in reply to: VA in USA urged to invoke emergency powers #9935
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    • Guardian Angel
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    @dointime
    splitdog wrote:

    This whole thread should be deleted. All it will do is divide us, just as politics is doing in the US right now. ;)

    I think that if something is censored then the reasons for this should be clear and the rules on censorship should be made known. This is in fact exactly the case here on fixhepC where the Doc has made his rules clear. Just having an opinion which is divisive is not one of the reasons which would justify deleting a whole thread.

    The right to free speech (in general, not on this site) has been much in the limelight this week with the 3 hour debate in the UK parliament on whether Trump should be banned from the UK. Many powerful arguments were made on both sides concerning his divisive rhetoric. For those who are interested, here’s just one report on that debate.
    http://www.vox.com/2016/1/20/10799886/uk-trump-visa

    My point is that we should be very careful indeed about what is censored if we don’t want a site where everybody has to sing the same tune to be here.

    dt

    20 January 2016 at 3:17 pm in reply to: Hairdressers – risk of infection? #9909
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    • Guardian Angel
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    @dointime

    I think it is sometimes hard to know what is unreasonable paranoia and what is just good common sense in the light of what we know about blood-borne viral infections. Everybody has to draw their own lines I guess. The principle is that blood-to-blood contact is a no no.

    So, common sense dictates to stay clear of another person’s blood wherever it might be found, and that goes triple if you have any open wounds on your own body. So for the fish in Thailand I’d be asking myself – could the person before me have bled into the water? Did they change the water between people and disinfect the pool? How long could the various viral infections live in the water? These questions have answers, so asking them and staying informed on the answers is the best defense.

    It has often been asked if mosquitoes can spread HCV, but to my knowledge there is no evidence to suggest that they can. I have heard it suggested that contact sports where blood is drawn by both parties, can be a risk. If blood-to-blood contact occured then I would reason that that is a possibility. Trying on somebody else’s earrings or piercings might also be a risk. Any accident situation where somebody is bleeding, no matter how small, is an automatic risk, especially if there’s broken glass which could cut you.

    I’m no authority on this subject. I’m just trying to step up my thinking about it in a way that I admit I never used to think before being diagnosed.
    dt

    19 January 2016 at 2:32 pm in reply to: Hairdressers – risk of infection? #9804
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    • Guardian Angel
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    @dointime

    Hi and thanks to the mod who moved this thread to the Q&A.

    Ariel, I do my own nails too. Since diagnosis I’ve been super careful about not infecting others. But as I hopefully move towards SVR, the possibility of getting reinfected has been creeping into my thoughts.

    LG, thanks for your observations. Very helpful.
    I’ve had a good look at the guidelines I posted and the thing I am least happy about is the electric hair clippers – “Potential for blood borne virus transmission”. It says that these things “cannot withstand immersion or sterilisation”. The instructions are to wipe over with damp cloth containing detergent and water or alcohol. I don’t think that’s good enough to kill HBV or HCV. Scissors and combs are cleaned easier so I’ll take my chances with them but I’m going to tell my next hairdresser not to use the clippers. I might even get my own to do a tidy up after getting a haircut. I’m also going to be a lot more careful about the hairdresser I use, including not going at a busy time.

    dt

    19 January 2016 at 4:27 am in reply to: Hairdressers – risk of infection? #9729
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    • Guardian Angel
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    @dointime

    Here’s an example of recommended best practice for hairdressers:
    http://www.craigavon.gov.uk/media/images/stories/Infection%20Control%20in%20Hairdressers%20leaflet.pdf

    I’m just not sure that I trust them to be strict about doing this every time. And no point in asking because if they are busy and sometimes cut corners then they are hardly likely to admit it to a customer.
    dt

    18 January 2016 at 4:07 pm in reply to: HCV New Drugs Blogspot #9673
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    • Guardian Angel
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    @dointime

    I think that where these cost-effective studies are shortsighted is that they rarely take into account the numbers of people removed from the work force due to being sick from hepC. OK, so that does not directly affect an insurance company, but it does affect any country which funds its healthcare from public funds, ie. taxpayers.

    Instead of having a contributing tax payer, what you have is a person who cannot go to work and needs to draw on the social welfare budget. If you then consider the large cohort of baby boomers coming through with hepC, it becomes worse. If these people are not cured then they are heading for care homes much sooner than would otherwise have been necessary. So factor in building all the extra care homes needed and the extra carers required to work in them and to provide care in the community.

    Even if people are treated but treated late, they may have developed a myriad of hepC-related ailments which would have been preventable with early treatment but are now not reversible. It’s too late for them. They are going to need costly support.

    Well, at least this report touches on quality of life, which for anybody living with hepc is what probably matters most.
    dt

    18 January 2016 at 2:34 pm in reply to: Do you trust Resof-L by Dr Reddy’s ? #9659
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    @dointime

    “Really, the UK need to step it up up in this area. ”

    The UK needs to step it up, period.
    dt

    17 January 2016 at 8:36 pm in reply to: Can hep C cause strange symptoms? #9535
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    • Guardian Angel
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    @dointime

    I know it is happening, but it still strikes me as surreal that in just over a month GPs in Australia are going to be able to write prescriptions for Harvoni for all who need it, and it will be supplied by the health service. I’m not dreaming, am I?

    Meanwhile in the rest of the world, the need for the meds is still a bottomless pit. How did that happen? I mean, I know how, but still. Hard to shake a feeling of unreality about it all. Maybe it is just my meds playing with my head :S
    dt

    15 January 2016 at 8:56 pm in reply to: F3 to F1 in 12 years while still HCV positive? #9283
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    • Guardian Angel
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    @dointime

    “Biopsy is a best bet. IT DOES NOT HURT. ”

    On what planet would that be?
    It’s true that the liver does not feel pain but the liver sac which contains it sure does. When that biopsy needle punches through it you know.

    Don’t mean to scare anybody here who is going to get a biopsy. Just – if you are offered pain meds, valium, etc. – take it.

    dt

    15 January 2016 at 3:06 am in reply to: Psychoactivity of the drugs #9153
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    • Guardian Angel
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    @dointime

    Hi LG,

    I got that gamma globulln shot right here in UK from my friendly local GP. It was 1986 and I was going to India. It was the only way at the time to give some protection for hepA.

    Around the same time, the UK were importing blood supplies from America. The Americans had plenty because they were buying blood from anybody who walked in needing the $10 dollars or whatever that they could get from selling their blood. They were also harvesting blood from the prison population. HIV had not quite arrived, well not in UK, and blood was not being tested yet. The hepC virus had not even been identified yet, it was just called non hepA-hepB. So against that background it is a miracle that anybody going for a medical procedure escaped being infected with something.

    I never noticed an acute phase but many things about my body changed shortly thereafter that makes me think it might have been then that I got infected. That was to my knowledge my most risky exposure to blood products. But, you know, it could have been loads of other things too. Before HIV, nobody bothered about blood. Kids came out of the playground with skint knees running blood. Hairdressers routinely clipped ears with scissors. Little Indian guys with razors stood on the beach all day doing wet shaves with the same blade until it got blunt. That was all normal then but unthinkable now.

    dt

    14 January 2016 at 9:34 pm in reply to: HCV New Drugs Blogspot #9125
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    @dointime

    It’s about time that fatigue were taken seriously. I can honestly say that fatigue has been my one and only major symptom of HCV, the one I have complained about the most and the one that has been consistently played down if not outright dismissed by my doc. Fatigue has wrecked my quality of life. It has ruined my ability to socialize. In recent years even a trip away from home has seemed too daunting.

    So it is good news that fatigue is finally being looked at with a view to making improvements. I don’t agree with some of what this article says but just glad that somebody is trying. I do hope that their efforts don’t turn into some kind of boot camp for the HCV-fatigued. They need to listen to the people who have felt it. It is a completely different animal to the healthy tiredness of a normal person after exertion, so you can’t extrapolate what it is like from that. Imagining that every bone in your body is made from lead might come closer.

    dt

    14 January 2016 at 8:12 pm in reply to: Psychoactivity of the drugs #9121
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    • Guardian Angel
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    @dointime

    Well, I’m a 60’s survivor too, so….

    But I don’t think I got hepC then. I think I got it from a gamma globulin vaccination (supposed to prevent hepatitis!) in the nasty 80’s before blood was tested. Who knows. Before HIV made people aware of tainted blood we were all merrily mingling our bodily fluids and believing that we could be cured of anything by a quick visit to the STD clinic.

    Anyway, I did get that euphoria for about a week and it knocked my socks off, but I didn’t completely realise that until afterwards. Even given all my previous, it still surprised me. Which is why I wanted to highlight it here. Actually it felt great and if they sold pills that would do that without any harm I’d be a buyer. Still, it was an altered state of consciousness and it’s always better to clock that when you are in it, I think.

    I am also hoping to find out how it feels to be HCV free after half a lifetime at least with that virus inside of me dragging me down. I remember that I used to have a vitality and a zest for life that I’ve not felt in a long time. I hope I get that back.

    dt

    13 January 2016 at 4:37 pm in reply to: Criteria for Treatment Decryption #8964
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    @dointime

    And now I am going to have a bit of a rant.

    Every day on Medhelp I am seeing a screed of posts of the general tone – help me, I want to get Harvoni. Or help me, I have been denied Harvoni and I can’t afford it. Where have all these people been during the last 6 months? Where were they when Mike wrote his very comprehensive story on Medhelp. Where were they on the numerous occasions when the name and website of Greg Jefferys came up? How much can ignorance be excused?

    I am sorry if this sounds harsh. But I get frustrated because I want to help but it is a full time job to keep on giving the same answers every day to people who could look up the answers that were given yesterday. RTFM. Most of us already have at least one full time job, which is to get ourselves cured of hepC. While willing to give others a hand up, there are some who are simply a big drain on my scarce resources, who ask for all the info and then – nothing. Time Wasters. Again, I feel that I sound harsh, but honestly I am at the point of saying to hell with them all. They need to get with digging their own garden because I am done digging it for them.

    So to people like Greg and some on this site I say – I don’t know how you have the patience to keep on going with the helping, but I think you are all heroes. Klhilde, if I am anything to go by, I think you have correctly divined that the resources to provide the help necessary for these people are lacking. If you have any solution to this it would be most welcome.

    dt

    13 January 2016 at 3:32 pm in reply to: Criteria for Treatment Decryption #8953
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    @dointime

    “Why this site is not overrun with refugees from that situation amazes me. People seem to be so “conditioned” to following the rules and accepting the status quo.”

    I think that this is a very big issue and you are rightly grasping it Klhilde. It is an issue of Social Compliance, whatever labels you put on the various groups within society. I have also been observing people who seem unable to step outside of the ‘chain of command’. Even when I put all of the information in front of them they would rather roll up to the NHS and get their interferon than consider a DAA tx by another path.

    I watched a program last night by Derren Brown about Social Compliance.
    http://www.channel4.com/info/press/news/derren-brown-to-return-to-channel-4-with-the-push

    There can be no clearer demonstration that there is a group of people who can be made to do just about anything rather than step outside of the ‘chain of command’. One wonders how close they would let themselves come to their own death rather than take the initiative necessary to save their own lives.

    So I feel more gloomy about the prospects of this cohort than I ever did. I am not even sure any more that there are going to be massive numbers seeking to save their own lives. But it is a possibility and it needs highlighting.

    dt

    12 January 2016 at 5:17 pm in reply to: Viral Load – Quantitative vs Qualitative #8792
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    @dointime

    “I think if I had cirrhosis and/or had relapsed from interferon I would probably still want to be tested at 24 weeks after EOT. There’s a psychological hangover from interferon that will take time to clear.”

    You are right about that Joy. I would be one of those of the old school of interferon. No way could I walk away from an UND test at 12 weeks and be confident that it was over. Probably irrational given the stats on SVR12, but that’s how it is.

    dt

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