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Well, FINALLY I got to see my GP now that she has finally spoken to the Specialist. Essentially, this is what she said he told her –
1. there’s no rush since I’m not ‘severely’ ill
2. why not WAIT for the PBS orals that the gov will approve in Feb 2016 (really???) and save $$
3. if i want to go ahead I have to see the Specialist; GP is not qualified to know about these medications, how to prescribe them or do the monitoring
4. I have to contact the RBWH clinic hep Nurse and discuss how to proceedAgain, I explained my frustration at being told in the past 5 yrs, I NEED treatment and not to put it off, I should get ready for the ‘new drugs on their way’ that will be available on PBS. I haven’t had a Fibroscan since early 2013 so who knows the condition of my liver, ok I’m not ‘severe’ or ‘dying’ but I’m fed up with being told to ‘wait’ while also being told ‘not to put it off’. I’ve only been with this GP a few months so she really doesn’t know me or my history. From the look on her face yesterday I don’t really think she gets it.
So, now a call to the clinic and see what the nurse says…..ahhhh
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HCongratulations to both Jill and Mike! WW! this is so exciting reading through these stories and seeing how quickly improvements show so early in tx.
BTW, curious Mike, you mentioned frequent ‘peeing at night’ – I have had this for a while now. Dr has no explanation, like so many of my symptoms. Have others experienced this as well re their HCV?Anyway, great news for you and many others here on the site, feeling impatient to start…
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HThis is really great news for J, and you too of course, Cindi. That is a fantastic drop in VL! So, glad he’s feeling happier. I was 18 when I got it and have had depression most of my life, genetic predisposition but living with this chronic virus may well have factored in.
It’s awesome you have taken this step for your son
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HHi Sharkyoo, I’m G3a and in mind-numbing process of getting Specialist or my GP to give me a script. Curious as to why you are doing 24 weeks of tx. My Specialist had suggested I would need 24 weeks when he sent me away to research tx via this site. But Dr James has commented previously on my query that I would only need 12 weeks. Is it to do with your fibrosis level?
Good luck and I will be joining the journey soon I hope inch:
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HBrowny wrote:And to follow on, yes you need to get a fibroscan to know what’s going on. I had been feeling well and my ALTs were fine, viral load stable, but when they did the firbroscan 6 months ago, I was F3/F4. This is not to scare you – hopefully this won’t happen for you, but I think a fibroscan result will help you in making a decision about what to do.
Thank you Browny, I actually have been worried about that. I’ve been feeling much worse in the past couple of years, always abnormal fluctuating LFT’s but also other issues. I don’t trust the ultrasounds I’ve had. I just ‘feel wrong’, my brother has already got cirrhosis and he knows what i mean about ‘feeling things aren’t right’.
As GAJ and Neilo have suggested I will contact GP today re Specialist number and Monday’s appointment – if she still hasn’t contacted him I’ll ask her if she can refer me for fibroscan and write script. I know she already said she would be happy to help monitor me, doing my blood tests, but if I can’t get to the public clinic until next April then i’ll do the GP2U. Thanks for the advice everyone.
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HI am new too and been reading your posts. I also have G3a. What great news for you so far- it really gives me hope!
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HSo Neilo how did you go ahead with it? Did you use the GP4U? My standard check-ups at the Hep clinic (RBWH) are every 6 months – so my Gp suggested since she couldn’t track down the Specialist ‘Why not just wait until next April’s appointment?’ So, 1st it’s ‘Don’t put it off’ and now ‘what’s the hurry?’
Because I get bulk-billed for my GP and blood tests I was trying to stay with this, i’m aware of the GP2U(4U?) option but it costs and I’m borrowing $$ for the tx as it is.
I’m sure they could have arranged a Fibroscan through the RBWH Clinic but there’s been no mention as this last appointment is the 1st Specialist to discuss the ‘importing of DAA’s’ with plus there seems to be an assumption I have ‘no fibrosis’!! Based on ????
I’m just tired of the waiting and the conflicting advice.
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HSorry Alsdad this post was in reply to LondonGirl’s post earlier – makes no sense here! I thought I was replying to her post, still learning how to navigate here i think!
Chejai wrote:Totally Agree with you – rant well done!
Good Luck in wading through the quagmire!
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HThank you very much for sharing your experience Joan. Your description of your insomnia pattern is exactly what I’ve had forever! For many years the struggle to fall asleep but always waking around 4 am and then unable to get back to sleep until about 7am, very deeply and full of lively dreams! But I’ve been on an antidepressant for years that I take before bed because it’s sedating – so fall asleep easily (most nights) BUT still wake at 4 am etc.
I only have coffee in the morning and if I have tea at night it’s herbal. Careful with diet, don’t tolerate a lot of things especially sweet/sugary things. I drink lots of water though.
As you say it’s going to be different for everyone just as our experience of living with Hep C has been.
Wishing you well
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HWell I am certainly feeling very frustrated! I’ve been waiting all month for my GP to discuss with my Specialist my decision on treatment and getting the script. Yesterday I’m told she’s been unable to contact him and I need to call the RBWH and find out how to contact him. She said that in his letter, from my visit last month, that treatment isn’t urgent since I’m ‘not severe’ (don’t have cirrhosis?).
Firstly, at that appointment when I said I was interested in importing the generics after reading Greg Jefferys story, he asked if I’d seen the movie ‘The Dallas Buyers Club’ – which I had – and gave me his phone showing the Fixhepc website and told me to copy the details and do some research. He offered to write the script and monitor me. He told me not to put it off if I wanted to see my 60th birthday and be there for my little boy AND to act quickly because the Gov and Pharma Co’s were trying to block access. He said since I’m Geno 3 it’s harder to treat and success rate 65-70% so would I consider adding Interferon!!! WT*, my inch-thick file in front of him was filled with history and assessments claiming I’m NOT an eligible Interferon patient!!
In 1999 I had a Liver Biopsy – results – F0; early 2013 a Fibroscan score 4.2 kph – Specialist who did this said it was a good score meaning I had minimal or no scarring BUT that a lot can change in 2 years, especially my age and how long I’ve had it. She told me then some exciting new drugs were on their way and to get ready to do treatment in the next 2-3 yrs (i.e. now).
Since then I have had regular blood tests (always abnormal LFT’s) and only Ultrasounds on my abdomen – saying my liver etc are ‘normal’!So, I rang the RBWH and since that Specialist is only a visiting MD for the Hepatology Clinics on Fridays they couldn’t give me contact details. I was told to look up his private practice. So, I did and rang them and they said all they can do is ring my GP and give her the Specialist’s contact.
I now have to wait until Monday’s appointment to find out if there’s been progress. I wanted to start in Jan – New Year – New Beginnings etc.
Why do we have to be ‘dying’ before we get help? I also don’t trust that the Ultrasounds are reliable, I’ve never read anywhere that they are used to diagnose fibrosis, so much relies on the technician’s skill.Ok, that’s out of my system – back to waiting….
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HSo very glad to hear J is alright and found probable source of illness. Lucky for you to have Dr James there to help!
All the best to you both
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HCongratulations – so many inspiring stories here! When you’ve lived with something like this for so long (more than 1/2 my life) it would take some time to believe it’s ‘real’! Good for you
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HLondonGirl wrote:Alsdad, funnily enough I was just having a good old rant re the NHS and its incredible bureaucracy. It is getting quite frankly ridiculous and putting lives at risks in a variety of departments.
Anyway, will discuss HepC because that’s why we’re hereI can understand that Drs not warming to the idea of patients self-treating and possibly buying from dubious sources,
However, if someone like Dr freeman, a Dr. has organised testing of generic medicines at a reputable lab and the medicines have been deemed legitimate, then there really is no excuse. The total lack of willingness to look into it and the pure stubborn narrow-mindedness re improving the situation by is just plain immoral. Surely, if they communicated with Dr Freeman and with the option of electonic mail (*rolls eyes*) we have these days (uh hello??) a standard letter could be drawn up by Dr F / The testing lab stating the medicines had been tested and they are coming from a reputable manufacturer (or words to that effect anyway) – the very least they could do would be to monitor patients even if they are tied up with the legalities of patents and they can’t prescribe. After all, it is saving money for the NHS patients paying for their own medicines for heavens sake!With the will and some creative thinking, they could even set up testing here in the UK (uh hello again?) – No. Why? Because big business rules here in the UK, particularly England and shareholders are in high places – I will leave it at that, . They have got the NHS in a vice and they can’t get out.
I also find it totally immoral that they have recently been offering not only Interferon to patients but Boc and Telap. (Yes, indeed). It’s been a while now that they have stopped Boc & Telap in North America. What are they doing, using up old stock? of medicines that can harm patients and cause long-lasting negative health problems that not only reduce the patients quality of life, but also end up costing the NHS more, when there are now better options available? Arggg! Not one dot of a holistic approach – as apparently joint pain, nerve pain, eye problems IBS etc etc are ”not considered connected to the virus’ or the medicines they have been using, even though there are plenty of medical papers written by top hepatologists , gastros and hematologist s saying the complete opposite and are available for patients to read online! We have to learn about this virus ourselves, because no-one else seems to want to acknowledge any of the symptoms we all have in common and most of us suffer that we all discuss on these forums.
Scotland no longer offers Interferon treatments for GT1s – A start at least. Apart from the fact the new treatments are better and more tolerable, Harvoni for Treatment Naive GT1s for 8 weeks is also cheaper than the triple ! – Absolute madness.
Another thing that concerns me, is Drs don’t seem to do much in the way of basic observations eg Pulse, BP, Listen to heart, lungs, look in eyes, reflexes etc any more – Why is that? I have been ‘looked at’ once since being diagnosed 18 months ago and that was by an excellent leading professor of Hepatology who has since retired and who I booked a private appointment with. I nearly cried after that consultation because a medical professional had actually bothered to check me out nearly a year after diagnosis. He noted a slight tachycardia and slightly raised blood pressure noted in a letter to my GP which was sent to a stranger in Wales because the admin in NHS hospitals is a mess. On mentioning to my GP that I’d like him to check my heart out before treating, he told me to ‘go on holiday and relax’. No wonder we are anxious when we go to appointments, we are scared to ask for advise or help re anything! We must remember that many GPs are now shareholders and partners in the surgeries, so financing of tests is a personal concern to them these days. There are many recent articles about how HepC can cause a higher risk of heart disease for example. How many of you have had a Dr listen to your heart lately ?
It seems to me that Drs just aren’t ‘Doctoring’ here in England of late. I know there are some excellent Drs and specialists out there, but somehow they are being restricted and I’ve read some articles which raise this very concern, A recent one was from a cancer specialist who said he felt restricted in trying things that may work when a patient was deemed ‘untreatable’, and felt like he ‘couldn’t be a Doctor’ – but that’s another story.
I have talked to so many other Hepatitis C patients who have become almost phobic about seeing their consultant or GP – Surely this cannot be right? Why has it become like this?
End rant – feel a bit better for it , I think
Big congratulations on your 8 weeks undetected Alsdad and here’s to your consultant for trying to raise the issue.
Totally Agree with you – rant well done!
Good Luck in wading through the quagmire!
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HSorry Em, to hear of the stuff-up, especially when you have to travel so much just for bloodwork. I hate my trips to the RBWH -it’s usually a day lost and lots of sitting around waiting
But, those LFT’s look great! Hope that’s good news in the waiting
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HSo Sarah, is your GP looking to referring you as a public patient to one of the Brisbane Hospital Gastro clinics for your Hep C? Because it is always such a long wait to get in. It depends on how long their waiting list is – which a DR can enquire about; and apparently, according to the Private Specialist I saw 1st, the introductory letter/Referral and whether it’s written by a GP or a Specialist. Typical bureaucratic run-around – your GP wants to get you into a Specialist because you can’t afford private but they pay more attention to an Intro Letter/Referral from a Specialist than a GP! The more severe your case the more priority, like you have to be near death’s door but NOT on the front step!
BTW, Awesome that your GP had the Factsheet mine didn’t know anything about it, so i gave her copies of the Genotype facts on this site – something with scientific data always gets them Wish you all the best on your journey
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50H -
AuthorPosts