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Get treated now zhuk. Doctors telling you it’s ok to wait because you’re F0 should be ashamed of themselves. Hep C is a global infectious disease epidemic. When a cure comes along regardless of the infectious disease, we used to know how to deal with it ie. Treat everyone asap. We did it with polio. We did it with smallpox. Maybe because of the effectiveness of vaccines we’ve forgotten how to address these problems.
I think there are compelling reasons for everyone to get treatment. They just differ from individual to individual. So the decompensated cirrhotic needs to get treated so they don’t die. For me, borderline F3/4, I needed to get treated before I developed full blown cirrhosis. You, like all of us will never got the years of lost quality of life back. But your compelling reason is that you can walk away from this with virtually no lasting liver damage if you get treatment now.
IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I’ll be very, very surprised if you can access them. Hell, I was told ages ago I’d only have a pretty good chance of getting them.
Well done wombat. I’ve officially lost count of the number of UNDs.
But Greg lives in Woodbridge. We would, however, happily have him in Franklin with the rest of the cool kids.
Take that grumpy nurse!
Congratulations, Vicki. Great news.
Oh man, Helen Tyrell lives in a richly embellished fantasy world.
Wish Mackenzie had asked her if Hepatitis Australia receives any sponsorship from Gilead or other Big Pharma.
That’s the sort of thing I like to read when I get up in the morning.
Absolutely thrilled for you Nadia.
I play lumosity too! 3 games a day keeps senility away.
Oh yeah I’d had them before treatment too, for some years. But interestingly, they were a slightly different quality on and off treatment.
Before treatment they were a constant right sided dull ache that would last for days and made sleeping on my right side uncomfortable. On treatment, the liver discomfort was confined almost entirely to that third week. The pain came and went over a matter of hours and was more focal rather than being spread over a wide area.
I think Nadia’s right. I think it has something to do with the inflammation settling. Clearly, large numbers of the virus are obliterated in those first couple of weeks. So it makes sense that then the inflammation starts to subside. Interestingly, around about week 4 – 5 the joint and muscle pains in the rest of my body started to improve markedly including some tendon problems that were due to past injuries and which had become chronic. It was as if the reduction of inflammation possibly due to an overactive immune system spread to the rest of the body.
The broken arm has made this sort of stuff harder to assess. But the mere fact I’m bored witless because of ithe arm where prior to treatment I would have been relieved to have an excuse to do exactly what I felt like doing – absolutely nothing – is a pretty good sign everything is still on track. In a really tedious sort of way.
Nadia wrote:Yes, Chester,
They are doing great job!Today first time ever I started feeling discomfort around liver area. It doesn’t mean my liver is hurting, it is probably as somebody suggested my liver is shrinking back to normal size and the tissue around it is tender
I had the liver discomfort round about week 3. Just before my 4 week VL. Freaked me out a bit. Only time that, briefly, my confidence in the drugs working waned a little.
Now I see a lot of people here reporting the same thing in that pre-4 week period. Anyway, the pains stopped after about a week and at about the same time the bloated feeling I’ve had for many years went away and my digestive system started feeling much better. Shortly, after that, the fairly extreme highs of feeling good on some days abated and the good feeling levelled out so now I just feel normal good all the time. I’m think this levelling out was the last of the virus having been vanquished. It just feels like it’s all gone.
I doubt I’ve really felt like this since I was infected 30 years ago in my mid 20s. I’ve spent nearly my entire adult life not knowing what it felt like to be really well. 4 weeks to go as of this Friday. Damn the time has flown by.
Oh yay! Sure sounds like those drugs are doing their thing.
I can think of a couple people you might be wanting to serve up a big slice of humble pie to Nadia, if things continue like this. Preferably with lashings of “I told you so “.
I read somewhere the other day but now can’t find the article that the earliest recorded UND was at 4 days. Mind boggling stuff.
Crushing fatigue, the usual bloated/right side discomfort stuff, joint and muscle pain and tendon injuries that wouldn’t repair and had become chronic, brain fog, apathy and depression I thought was related to suffering from PTSD. Plus some symptoms I only now realise I had because now I have something to compare them with. Especially overly frequent urination (accompanied by loin pain) and a digestive tract that I thought was functioning okay but now realise it wasn’t.
The vast improvement in mood after the drugs kick in is the effect that has most taken me by surprise. And the positive outcome I probably appreciate the most.
The whole thing reminds me of that movie Cocoon. The IMDb synopsis:
When a group of trespassing seniors swim in a pool containing alien cocoons, they find themselves energized with youthful vigour.
David Crosby has hep c.
https://en.m.wikipedia.org/wiki/List_of_people_with_hepatitis_C#Music
He had a liver transplant in 1994 paid for by Phil Collins.
https://en.m.wikipedia.org/wiki/David_Crosby#Medical_problems
Also to add to the above, nurse said of the patients she’s personally monitoring (don’t know how many that might be or what their personal characteristics are – quite a few patients I’d imagine given I’m in Hobart), no one who was UND at 4 weeks had relapsed so far. And the EASL guidelines for cirrhotics is 12 weeks with RIBA. That’s why my specialist wanted to add in the Riba in case there was some cirrhosis there given assessing fibrosis is not an exact science no matter how you do it.
So while I’m taking some risk by not extending, I’m confident that it’s a small enough risk it’s worth taking. But of course, not only do everyone’s individual characteristics influence what decision they make there may also be different personal factors to consider. Like whether to you can go get the drugs if a worst case scenario eventuates and exports of generics are stopped.
Oh and nurse said once you are UND on treatment you will stay UND while on treatment (provided you continue to comply of course). You can’t go backwards while on treatment. Hope she’s right and I’m not spouting rubbish. Perhaps the doc can confirm. So my next VL is scheduled for immediately after end of treatment. Next one after that will be 12 weeks after which hopefully I’ll be done. Got sent away with an FBC form but only to be used if I start seeing any signs of anemia. Now at the end of week 7, that isn’t happening yet so doubt it’s going to be a problem.
When I got my 4 week VLs the nurse assessed my chance of relapse against a checklist that included:
1. Whether or not an early responder (early responder defined as UND at 4 weeks)
2. Genotype
3. Treatment experienced vs treatment naïve (my understanding was treatment experienced referred to previous interferon based treatment)
4. Degree of cirrhosisAs I can tick all these off (UND, 1b, naïve, f3/4) and she said if it comes back we can just hit it harder for longer, I chose not to extend Sof/dac/RIBA beyond 12 weeks. And I’m an optimist.
Ultimately, should I have to retreat, I figure no matter what they do, the generics will continue to be available somewhere in the world and I’ll fly anywhere and crawl over broken glass to get ’em if I have to.
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