Forum Replies Created
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Thought the same thing, zhuk.
I had these dreams of mixing sofosbuvir and Mike’s male pattern baldness medication and capsulating it. Obviously not a complete solution but a significant number of male hepers are bald so it would be a start.
On a more serious note it seemed too easy so I did a bit of checking and apparently the active ingredient in Daraprim is well out of patent. But not a very big market so not worth any competitors catering to until Turing pushed the price though the roof and restricted distribution which then made it worthwhile for ExpressScripts to smash the market with a $1 capsule to avoid paying Turing.
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
mgalbrai wrote:Drank like a fish for 30 years.
Mike
You drank water for thirty years and you wonder why you were only F1?
It’s a strange disease though, isn’t it? Some seem to get away with abusing their liver for years and others end up with all sorts of problems. Mind you, my annual checks ups gave no indication at all until 2012 and even then my liver wasn’t too bad. Damn…..now that I think about it all the problems have been since then when I gave up!
G
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 like your approach Angus. Firmly in charge of your health while giving the specialist the room to help you.
G
Hey Em……how’s that thumbs up smiley coming along. We need it!
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
Thanks zhuk,
For anyone not aware, MIMS is basically the bible of the medical profession for what drugs are available for prescribing for what purposes.
Chejai,
Well, it isn’t illegal and we are about three months down the track with no one stopping it! Depending on when he told you there may have still been some doubts in his mind at that time. Yes, sounds like he’s arse covering to some extent. To be expected. He is also ensuring you were aware of all the options available to you and their implications…….as a good doctor should.
I wasn’t present for the phone call so what he said and what your GP read into it are unknowns.Flyingfox66 appears to have investigated some options. Maybe pm her to discuss including rough costs if either of you don’t feel comfortable doing on here?
G
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 klhilde,
Apparently the answer to no. 1 is: “He is a senior research career scientist at the Atlanta Veterans Affairs Medical Center” according to Emory University who should know given that he works for them in some of the 1/8 of his time that isn’t devoted to VA.
http://news.emory.edu/stories/2014/08/ray_schinazi_honored/
Surprisingly given the seemingly huge workload and vast list of achievements that I was able to locate that relate to the 1/8 of the time that his attention isn’t focussed on VA, there is very little about his achievements in the 7/8 that he does work for them. All I could google was…..er, nothing???
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
Great thoughts and suggestions about the helpful specialists, Jolie. As you say the level of monitoring doesn’t need to be as intensive as the old treatments. So for people who are confident of their ability to determine their own state of health there is less need to take up the specialists time with extended consultations covering everything that has happened since the last visit. Obviously if you have any concerns or doubts these should be discussed to ensure that you are comfortable but otherwise it will help others to gain treatment if we can free up these helpful specialists time to focus on new patients.
In my case, I will need a bit of extra monitoring due to the Riba and other issues but my intent is to keep my appointments as short and sharp as possible. In/get results/check for developments/out. Five minutes tops unless something comes up. I’ll be explaining this to my specialist on next visit so he can use the extra time productively, and doesn’t think I’m being rude.
G
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 Sue and welcome,
As Alsdad says, it does seem to vary. Chatting yesterday I posted that it was the best I’ve felt in years. That is true but as I corrected later, it’s all relative and after two weeks I’m certainly not ready to run a marathon yet. As my panel says, I’m an optimist so tend to overplay the positives and ignore the negatives.
But after 17 days all the scientific data and our anecdotal stuff here says your liver will be functioning much, much better. When are you getting your first tests? I think you will be pleasantly surprised by the improvements there even if you aren’t feeling them quite yet.
G
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 Devil,
Welcome. I suspect your post got everyone going because no one wants to give people false hope.
I think what everyone is trying to say is they doubt it will be that easy to access if the promise of 1st Feb by the doctor is actually met by the NZ govt. The costs of access for all would be astronomical even if restricted to New Zealanders and maybe their partners. So what will happen is that only the very sickest will get it now and the rest gradually over many years,maybe, which will be pretty much the same as the Australian situation give or take a few months.
It would be great if it happened like that but most of us have heard similar promises before that didn’t eventuate so we’ve decided to stop waiting and buy our own tested generic medication.
Anyway, stick around, have a read, ask questions.
G
(BTW Generic basically just means that it is not branded. The same ingredients and tested to make sure they are.)
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
Yeah, my angel wings have already started to sprout.
G
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
Fantastic result Angus!
G
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
Trying to find it now. It isn’t indicated on the drug interactions chart but apparently same group effect as grapefruit so from memory in theory you need to reduce the Dac dose to compensate.
Okay, can’t seem to find the reference that linked from here and directly related to Dac but it is a CYP3a4 inhibitor per the attached.
From what I read previously it is a mild inhibitor but how do you work out what your dose was to adjust the Dac level? So figured better to just avoid while on treatment.
Okay, found the link on site here:
http://fixhepc.com/forum/experts-corner/108-daclatasvir-warning-interactions-cyp3a4.html
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
Definitely not a wowser mate, the 35 odd years between infection and Dx were what put my liver in it’s current state.
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illy:' />
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ick:' />:: : :Bloot wrote:Also, what London Girl says is actually a good idea at parties etc
I wander around with my 600ml plastic bottle of water which can look a bit weird lolIt is, I’ve taken to taking my own whisky tumbler, ice, lemon, soda water (occasionally dry ginger) to BBQs and similar. I can mingle without any funny looks or questions and sip all night. The dry gets a bit too sweet after a while though.
G
(also been known to have a puff but that interacts with Dac so off the menu during 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
Chejai wrote:Snip……
I’d been reading Greg Jefferys’ Blog. The Specialist said that was great but he knew of a better way of ‘importing’ and showed me his phone with the Fixhepc website – told me to go home research it and get back to him and he would send a letter advising my GP of this.Hi Chejai,
Okay, based on what happened at that meeting you had above I think you have one of the supportive Brisbane specialists on your side. The problem I suspect is that a great deal of pressure is being applied on the public clinics and as a result the helpful people are wary about putting their heads above the barricades in case they get shot at.
You may have read here that my specialist agreed to write me a private script and then monitor me through a public clinic. What I haven’t related till now is what has happened over the last couple of weeks. I didn’t say anything until now because I was waiting to see what would happen before going public on here.
So, a couple of weeks ago my meds arrived and I tried to contact the nurse at the clinic via email and phone msgs to let her know I was ready to start treatment and monitoring. No response! Well, I thought about it overnight and the next morning decided “Stuff this, I’m starting treatment now! She’s busy and will ring me when she has time.” Nothing!!! So knowing that I had a CT scan at the hospital in two weeks I decided that if I hadn’t heard anything by then I would go to the clinic at the same time and front them about whether I would be monitored or not. If not then I would contact GP2U and see about arranging at least minimal monitoring tests etc. in tandem with my GP who is now coming round to the idea of generics.
Anyway I heard nothing until the start of this week when the nurse returned my call. As we talked it became increasingly clear that she was reluctant to mention generics or offer anything to me…….BUT if I suggested something she would readily agree to it. Now, I have had regular specialist/clinic contact over the last 3.5 years including 6 months as part of a clinical trial plus have read extensively about the generics and monitoring required so I have a pretty good idea of what is required including Riba effects from last time, so we were able to negotiate my monitoring and clinic visits in a satisfactory manner so that I get what I want/need. It seems very obvious to me that pressure has been applied for clinic staff not to offer support to patients using generics.
As I understand it you are not in the position to become a private patient of the specialist who just happened to show you his phone that at the time just happened to be showing the URL for this site? In that situation I think I would probably make sure I had an appointment booked with the clinic to see him as soon as possible in the new year. Don’t mention generics till you get in his consulting room and the door is shut.
Further to that (if I tread on any corns here pm me for an edit) in the mean time see if you are in the position to make an appt with GP2U to investigate your fibrosis status and where you go from there regarding treatment. If that works for you and you are confident to go ahead then you can turn up to see that specialist at next years appt and say “My current list of medications that I take includes this and that, oh! and Sof and Led and I need the public clinic to continue to monitor my hepatitis taking this into account”.
Hope those thoughts help.
G
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 Jolie,
Great to hear you made it to the party!
G
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
A difficult decision. My specialist told me that even with my liver condition one or two (std size 100ml or 4 fl oz) glasses of wine occasionally for celebratory purposes like Xmas and birthdays, etc would not harm me.
But….I have 4 partner & siblings birthdays in the next two months, Xmas, New Year and other events that could be considered celebratory and where others will be drinking. Which ones do I abstain for? Too hard! So I have decided to remain teetotal until SVR24 which takes me to Oct next year. That will truly be something to celebrate!
Anyway, over the last few years I have (to my great surprise!) found I really don’t miss alcohol all that much. YMMV.G
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
