TOPIC:

Ah thanks...I guess its a lottery isn't it. And a waiting game.
I've heard the hepatology nurses at the Mater are very nice and sympathetic so maybe I will give them a shot instead.
I guess I'm lucky I at least have a good GP...he was the one gave me the Hep C QLD factsheet on importing the drugs.
Hope everything goes well for you

Hey Chejai

I'm so sorry it's taken me so long to say welcome and have a yarn. Get caught up in the mod and admin staff and now days don't get time to read the many posts per day etc. The DAAs are a reasonably side free tx compared to previous tx. Looking forward to watching you obtain and then cure. I've definitely noticed the clarity that I now have compared to a couple of months ago. The mental impact of this disease is so underrated. That's why I love this site and the amazing people all around me. Em

Thank you Emilio, I have been reading through your posts from the start - i'm trying to acquaint myself with the members here and reading all their stories. I admire your fortitude and passion to want to help others, like us, to access affordable treatment. Good on You☺️
You have been on a long journey re tx, so I hope that this time it's a success.
I have had this for so long that many symptom, which have worsened in the past couple of years, leave me confused as to whether it's part of the chronic Hep C or something else. Dr's have usually said it's nothing to do with the Hep C - the periods of extreme fatigue, persistent nausea, GI issues, brain fog, insomnia etc. Guess I won't know until i have it cleared out of my system. Although I do have EBV, got it at the same time, and it lays dormant in my system but flares up when under stress. Don't suppose the DAA's will work on that too?
Thanks again, all the best!

So 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

I am seeing him on Thursday to get blood results and discuss the next step. I'm not very sick, so I guess if I go public I'll be doing some waiting. I haven't got insurance and very limited funds.
I rang the RBH hepetology and they said one month for cat 1 and four months for cat 2 (GP gets to choose a category so that might be useful). Mater seems to be 3 months for everyone. I only really want a fibroscan though so maybe there will be some way to get that. I'll see what he says.
I'm not rushing into this anyway, having only discovered the possibility of buying these drugs recently. I'm not naturally trusting of pharmaceuticals and wondering if they have really got it right this time. So far it looks promising.
I am watching everyones progress with great interest and growing excitement and I am really furious at Gilead for making so many millions of people suffer needlessly. Not to mention the discrimination we have all had to face over the years.
Good luck with everything and keep us posted.
Sarah

Well 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....

Damn, frustrating for you Chejai! Sorry to hear you've had a run-around re getting hold of your specialist. Not surprised you were gobsmacked on the Intf suggestion with you looking to access the new meds that makes no sense whatsoever.

I agree with you; ultrasound seem a very haphazard way of trying to obtain fibrosis status - is there no way your clinic can organiise a fibroscan? If you haven't had one since 2013 as you say a lot can change in a couple of years.

Fingers crossed for your GP to get the ball rolling on Monday mate

You really have to wonder about the professionalism of some of these Specialists. I can relate to your experiences Chejai. I finally got to see my Gastroenterologist after waiting for 5 months. I'm not a new patient as I've been going to him for 15 years and have had 2 biopsies done.Both F1.The first in 2005, the 2nd in 2010. Any to cut to the chase, I saw him on the 5 October,we talk, we decide that Sof/Dac is the appropriate tx and he he refers me for a Fibroscan which I had on the 19 October. He wrote out the script for the meds and said he was quite happy to monitor my treatment. Since then nothing/nada/zilch. I've tried to make an appointment to see him but get told not until February. I explained about the Fibroscan and was told he's been given the report and will ring me. Nothing ,its been weeks and I haven't heard from him. I think I've been' cooled out'.
If I had treated a Client in a similar manner I'd be sacked. I'm not deterred and have gone ahead and I'm in week 4 of the tx.I see my GP tomorrow and hopefully can arrange a SVR. If not I'll just have to make a appointment with one of the Dr at GP4U

So 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.

Chejai

I am from another state and I have had a similar experience with not being able to schedule appointments with the liver clinic at the hospital - I was able to find a GP who has just started doing fibroscans - see if there are specialist HIV GPs in your area as they are treating people with HIV and hepatitis - this is what worked for me. But yes, I am paying out of pocket costs for going through a GP.

Hi Chejai
I went the private route. The Fibroscan cost about 190$ and I got 90$ back on Medicare or there about. I purchased the Sof/ Dac through GP2U . The Specialist I saw was OK about writing out a script and referring for Fibroscan. His fee for the appointment was a tidy 290$ which Medicare paid for about 100$. So after telling me he was happy to monitor Tx I hear nothing from him
I had the Meds I had the Fibroscan I had the bloods ect but the Specialist is suddenly incommunicado.
I went ahead and started Tx on the 5th without him. So I'm now starting week 4. No side effects at all. At the end of next week I should have my LFT and viral load done. I'll have to see if my GP will do that. If not I'll make a appointment with GP2U and get it done through them.
If you can afford it Chejai I'd just go the private route. Why wait.

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 wont happen for you, but I think a fibroscan result will help you in making a decision about what to do.

Hi Chejai,

If you haven't already, can I suggest you contact your GPs surgery today and give them the Specialists private practice contact details in case it hasn't been passed on. Preferably phone then tell them you will email through as well. (That way it doesn't end up on a post-it note on their fridge door) then take a printout of the email with you on Monday in case they haven't transferred it to your file in time.

And the correct name is GP2U. It will cost you a bit more than a normal GP but not anything like specialist costs.

G

Browny 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.

Hi Chejai

The fibroscan looks for evidence of fibrosis to determine if you have liver cirrhosis. The ultrasound looks for evidence of liver cancer. Good that you are getting ultrasounds, but you need the evidence about the level of damage to the liver.

The research shows that Hep C is not linear - its always hard to know if things are stable or if the damage is progressing so my advise is don't panic. Even with a F4 fibroscan result, you might still be quite stable for years.