Forum Replies Created
-
AuthorPosts
-
Joy wrote:
I remember reading on Greg’s blog that Semiprevir is available on it’s own, from the chemist with a script from your doctor. So I dug it out, under Sept. 3:://hepatitisctreatment.homestead.com/hepatitis-c-treatment.html
Perhaps the good doctor could clarify.
See here:
http://www.pbs.gov.au/medicine/item/10197q-10200w
Click on authority required. James has previously said he can’t prescribe it. Think he said that only 2 docs in Tassie could one of whom is my gastroenterologist at RHH liver clinic. If you look at the PBS entry including the “Note” section you’ll see there’s all sorts of hoops to jump through in regard to the prescribing of it.
God I am so effing sick of typing with one finger on my left hand.
No you can’t get Semiprivir separately. My gastroenterologist was initially open to the idea of prescribing it for use with Sof if I couldn’t get anything else and chucking away the interferon as it would still be saving the government money. But on reflection, he had concerns it might be considered fraud and then the comp access dac was available so it was a moot point. I was talking to someone from Hep NSW the other day and told them they should lobby for Semiprivir to be listed separately as it could be helpful in some hard to treat cases. Doubt they’ll do anything about it though.
This post and other “how to do it” posts like it should be put in stickies at the top of the forum with comments locked off.
At 14 days, given you’re a 3a, your viral load and being a non responder, I think that’s a bloody fantastic result.
That’s fantastic Joy. So happy for you. Joy to the world indeed.
I think the joke’s on cp at the moment. She deleted the posts of (and presumably banned) a hepatologist. Granted a hepatologist travelling incognito but nevertheless, comedy gold. You couldn’t make this stuff up.
Hee hee. Yes her paranoia has actually had doubly desirable effects. By going about deleting posts and accounts she attracted enough attention that I know several of that board’s members came here in search of generics. At the same time, by closing the board to new members, people who may not know enough to know any better are being spared from reading the quackery and utter bs she posts on her board.
As John Gilmore said, the Internet interprets censorship as damage and routes around it.
I might add that among the rubbish she spouted on her forum was the claim that mothers should put the oxygen mask on their child first in the case of a plane crash. I pointed out this was not the correct procedure and it was in fact the other way around. But she deleted the post where I said it. As the daughter of a former Qantas air navigator that irks me more than anything else that happened in my encounter with her. It’s proof that people like her can be down right dangerous.
I’m posting this here as well as in the Doc’s link above.. For heaven’s sake, if she opens up the forum to new members again, don’t go rushing over ther causing trouble. Just beware of this hepcaustralia.com.au aka AHCS forum, good people. There’s something not right going on there.
Hi, I’m Chester. I just thought I should clarify something about the above link to http://www.hepcaustralia.com.au. When I say clarify, I use that term extremely loosely.
As far as I can tell, hepcaustralia.com.au, aka AHCS, is unrelated to Hepatitis Australia. AHCS appears to be run by someone who identifies themselves only as cp@gc. Fortunately, she is very secretive about her real identity so I don’t have to worry about defaming her.
I ran foul of cp a while back. Someone else who is now a member of the fixhepc forum started a thread on the AHCS forum asking if anyone was on generics. They actually just wanted to compare notes. Other forum members started asking questions. I joined the thread and told them about my personal experience on generics.
It was all very civilised. Then cp turned up and said to another member that they shouldn’t have anything to do with generics unless they had met someone taking them in person. I called her out on this firstly, because I thought it was just a stupid thing to say. How does meeting someone on generics tell you anything about the safety and efficacy of the drugs. Indeed, how by meeting someone do you know they are taking generics or even if they have hep c!
Secondly, it was clear to me that cp’s comment was a backhanded and cowardly way of calling my own and the other generic user who started the thread’s credibility into question. And in fact, she then went on to suggest one or both of us were possibly spammers and to accuse me of promoting a single cause despite the fact the thread was called “Indian Sofosbuvir” and other members of the forum were urging myself and the other poster to share information about generics.
She also claimed at this point that the forum was privately run and funded entirely by her. Up to this point I too had thought the forum was related to Hepatitis Australia, a mistake the good doctor in the email you quote also appears to have made given s/he refers to the AHCS forum as an “official” HCV support network. And an easy mistake to make, the names are so similar.
Despite cp’s readiness to call other people’s credibility into question, there is no way to verify her own. Nowhere does she identify herself by her real name. What’s more, there is not even any way to contact her via email even though the site’s FAQs state:
Why can’t I login?
There are several reasons why this could occur. First, ensure your username and password are correct. If they are, contact the board owner to make sure you haven’t been banned.
I know this because a later post by me was deleted as was my account. All without any notification from cp at all. Very poor forum etiquette to say the least.
I had left the thread after taking a parting shot at cp by accusing her of being big on love and support but short on supporting people to get cured and comparing her to Belle Gibson. But I looked back in a few weeks later only to discover to my horror that people in that same thread were claiming, among other things, that:
– APIs were not the real thing and that generic users had to make their own drugs from them. I presume this referred to people encapsulating their own meds but anyone reading it could easily take it to mean that people were cooking up their meds on the stove like home bake heroin.
– That the excipients/fillers were an essential part of the medication.
– That Doc James was making $1000 per patient profit on the drugs.
– That Greg Jeffreys was doing what he’s doing purely for his own self aggrandisement.
So I jumped in to correct these fallacies and that’s when she deleted my post and account without notice. I have since been told she claims to have had to close the forum to new members because of fixhepc. Whatever that means.
I’ve come to the conclusion that AHCS is actually a privately run forum. I think there is something quite sinister going on there. In the short time I posted there, I kept getting an uneasy feeling that cp liked to keep people feeling sick and helpless because it gives her control over them. It has occurred to me that all medical forums are potentially honey pots for people who suffer from factitious disorders and Munchausen by proxy type syndromes. I think this may be the sort of thing that is going on at AHCS. It is not the only time I have witnessed it. There is another blog I have read which I won’t name because the author appears to use their real name. They claim to be a hep c sufferer who has failed treatment 5 times including Harvoni. But upon close reading of their blog their story simply does not add up. There is something amiss. Nevertheless, they have continued to convince some other well respected hep c bloggers with their story.
In short, charlatans come in all shapes and sizes in the hep c world.
Ditto.
I think the recommended/not recommended in that article pertains to $s not what is recommended from a purely medical point of view. But I think you may have misread the table too (not hard to do- it isn’t very clear).
To me it says that if you’re geno 1 with compensated cirrhosis and interferon ineligible/intolerant, then it is recommended.
Yes Lynne, what Joy says is correct. Sof/led has a larger trial base. These are the recommendations from the last EASL conference for treatments for the various genotypes (note the document may not render properly on tablets):
http://www.easl.eu/medias/cpg/HEPC-2015/Summary.pdf
I’m also 1b and on Sof/dac/Ribavirin. RIBA because of borderline cirrhosis and dac because led wasn’t available when I started and I was able to get dac under compassionate access. Frankly, I’d have been perfectly happy with any of the 4 options recommended for 1b. We are now the easiest genotype to cure. The results for both dac and led for 1b’s are so close to 100% we really shouldn’t waste any energy stressing about the risk of failure (but of course we all do any way!) The fact your disease has not advanced too far gives you even more reason to be extremely confident that at the end of treatment you will be cured.
People moralising about injecting drug use? Well yes, that goes unsaid really.
But about alcohol. Nope. I’ve never felt that anyone who told me not to drink because of hep c or a dodgy liver was doing so for moral reasons. Rather I took their advice for what it was. Cold hard scientific fact.
Bloot, what miko said. You cannot drink. Not just on Tx. Not at all while you have the virus and for a good while afterwards. I have no doubt I would not have got to the F3/4 level by my age if I hadn’t become quite a heavy drinker for the first time in my life around 2009 and for about 5 years. You cannot drink at all. Nothing will screw up your liver quicker and more thoroughly than the combination of HCV and alcohol.
Sorry to be the bearer of bad news but you have to stop. Completely.
berrinice wrote:I think she has worked in the ACT
Uggh! (Shudder) Say no more. The land where pissing in other people’s pockets is an art form.
Wish someone would pay me $150,000+ pa to talk shite.
-
AuthorPosts