Forum Replies Created
-
Hi Dan, sorry to hear about your skin problems, I have eczema/allergies myself, it’s in the family.
Completely agree with London Girl’s advice. I have also found pure Aloe Vera gel – I keep in the fridge – mixed with a few drops of Lavender oil and Chamomile Essential Oils – very soothing and light, not greasy, my Pop loves it, helps me and my son when we get it too.Very important to buy Pure Essential Oils and not Fragrant oils – they do not have the therapeutic chemical properties, in fact fragrant oils would make you worse.
Another soothing thing is Organic Chamomile tea, make a cup or pot of tea, let it cool and dilute with more cold water and soak a flannel/wash cloth and place it over your face or other areas for several minutes. If you have a bath, you could throw a couple of tea bags in with some Lavender Oil and soak yourself – very relaxing and soothing.
Don’t have hot baths though – most people with eczema find heat makes it worse. As others have said oatmeal is great too. put a few spoonfuls in a clean sock/stocking tie it up and pop it in the bath, this will create the soothing milkiness without the chunks floating around and feeling gross!! Add a few spoonfuls of Epsom Salts too as this Magnesium source will relax you.I also make up a Chamomile tea and add a few drops of Lavender oil and put it in a spray bottle and keep in the fridge and ‘mist’ myself several times a day. Always shake well before use to keep the mix blended.
Good Luck, there’s a lot of great advice here.
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 50HOh, 2b that is such AWESOME NEWS!!!!!
Yes, indeed my ‘sitting on the fence’ from endless promises and told to ‘wait’ is ceasing now!
I give up on the Clinic Specialist. I will go the GP2U route just finding out how to proceed.I look forward to the same great news you and many others here are getting – very happy your confusing tests got sorted
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 all for your encouragement. I think you’re right come Friday if they call at all it won’t be getting the ball rolling at all, it will be more promises and told to ‘wait’. Personality flaw of mine that I do persevere even when the writing is on the wall very clearly regarding negative outcomes. Nevertheless, that same perseverance has saved me and gotten me through some dark times.
Dr James has said here that he can work with a Hepascore since my Fibroscan from 2013 was good.
Ok, so how do I use GP2U to get Dr James Freeman personally and not another Telehealth DR?
Also, do I need to setup Skype?Completely off-topic – why do my posts have a pink highlighted ‘EDIT’ button in corner long after I’ve posted? I kept thinking I’d made mistakes but surely the program wouldn’t be that pedantic
Appreciate anyone’s advice.
So glad I found this site everyone is so supportive.
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 50HBeautifully put Zhuk – ‘headdesking’ – that’s exactly how I felt afterwards and still today, lol.
I too was shocked that she didn’t think there could be any change in my liver. My LFT’s always elevated, sometimes 2-5 x the max range. I’m on a range of medications and i do drink wine. Yes I know I shouldn’t drink at all!!!! I try but I’m still working on my coping strategies with anxiety.
Yes, I have been too patient ahhhhh I was trying to save $$ being bulk-billed for visits and blood tests – thinking it would have been simple – the way he put it initially!
I’m in the middle of my son’s assessment/report writing for homeschooling this week, I can wait until Friday. I’m quite sure the nurse will be frank with me if he’s back-pedalling. Either a script done then or a Green light for me to GP2U.
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 50HHey Cindi if he does like Strawberry milkshakes couldn’t you make smoothies? You could blend in berries but there’s always some little chunks, so he’d be onto you. You can get things from the health food shops like ‘Super Foods’ powder sachets to make smoothies and they have all the vitamins and minerals in balance. I was using some Berry ones with super greens at one time – delicious!
Good Luck with it!
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, now I finally got to talk to the Clinic Hep nurse – that the Specialist told my GP for me to contact if I wanted to proceed with the generics – and I’m more confused than ever!
I gave her the whole rundown of what’s happened since my last visit there. She knows of this club and people getting tx but no other details, hasn’t actually been on the site. She wanted to know WHY was I calling her? She didn’t know what she was supposed to do and the Specialist hadn’t spoken to her about my case. I asked if she could arrange a Fibroscan – she wanted to know why I needed that, was it a requirement to buy from the Club? I told her it was to see if I had cirrhosis because tx was different re the script. She wanted to know how ‘recent’ the results needed to be, since I had one in March 2013 – score of 4.7 – my liver was obviously fine and couldn’t possibly change that significantly in that time. If it had of been an 8-9+ then yes, it would be advised. I told her that the Specialist who did the Fibroscan told me it was a good score BUT ‘a lot can happen in 2 yrs given your age and length of infection.’
She told me it was looking good for the generics to be available ‘early 2016’ but that the Specialists/Dr’s would know by the end of December what the plan is – will GP’s be able to write scripts, will there be priority listing etc. So, she suggested waiting to find out! I told her I’m sick of being told to ‘wait’! Why was the Specialist insistent I don’t put it off? He even said he didn’t believe the Gov were going to put it on PBS.
Then it got interesting because what she did say was, ‘I believe everything your saying… I’ve been in the clinic and heard these things said. The problem is …let me put it this way, he doesn’t always follow through with what he says. I can tell you this – there has not been ONE script written for these drugs from this Clinic!!’
She suggested, ‘I would imagine, ideally for you, given your location and situation with your son, that we get the script written and sent to you and you can go through this club and your GP should be able to monitor you. We’d see you at some point during your tx. But, how does he even know how to write the script? Which medication/dosage?’
I told her the info was on the site.Since he is only there on Fridays, she said she would speak to him and call me when he’s in the room.
So, now I ‘wait’ until Friday. Looking more and more like I will have to do the GP2U route…
Does anyone know if the GP2U process requires a Fibroscan more recent than 2013, or probably just the bloods to calculate the Hepascore?
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 50HYeah sorry i can’t add anything to what your test was but in agreement with Bloot. When I went for my 1st appointment at the public hospital clinic my GP, at that time, sent me off for full blood work including Viral Load. Gave me copies to take to the Specialist and when he looked at that page VL result, he says, ‘I don’t know what that’s for it’s useless!’ He was actually annoyed! I was impressed my Dr had ran everything. After that they always made me get my blood done at the hospital and wouldn’t send copies to my DR for either of us to see!
So 2b are actually paying out of pocket for these? I know your healthcare system is very different to ours. Be pretty PO’d if I was
Hope you get it sorted, Good Luck!
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 50HWhoops, Don’t worry just saw the ‘Private Messages’ option at the top! Don’t mind me still navigating the site. I only just saw the ‘Redemption Trials Posts’ – now I know why ZHUK is waiting to start in January
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 50HOk, thanks everyone for the advice. Monday I try to track down, again, the Clinic nurse I was referred to – see what she says about how I get things started. I will ask re Fibroscan and Hepascore. I should contact the private hospital that does the fibroscans (only one available) check on waitlist because maybe Hepascore might be quicker. Once I know where I stand re their helping me or not I may go the GP2U route.
I feel sure the Specialist was just doing his job in making sure he covers all options so that he knows I’m making an informed and responsible commitment re tx, although he appears to have ‘spooked’ my GP from monitoring me.BTW, how do you PM someone?
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 50HChester wrote:As it happens, one of our US comrades who is currently here for treatment has asked me to teach her some of the local lingo when we go on a jaunt up the coast next week. So……..
It makes me want to spit the dummy when these dipsticks, drongos, drop kicks, galahs and mongrels come the raw prawn with us.
They’re as useful as tits on a bull.
Bunch of wowsers the lot of them.
The drugs will be available any day now? Pig’s arse!
If they tell you to wait, tell ’em they’re dreaming’.
Hahah, Chester good examples
) Slang can even change from state to state too. There are a lot of words used differently by US and Oz – e.g. ‘I was really pissed’ – apparently in the US it means you’re angry (we say we’re ‘pissed off’ but that here means you’re drunk, wasted, legless, shit-faced etc. US – ‘We’ll be rooting for you!’ – very confused when I 1st heard that, we don’t use that expression to ‘cheer’ someone on!
Here’s a few I’ve grown up with-I was totally ripped off by that waste of space, bloody oxygen thief!
Stop carrying on like a pork chop (I still have no clue of the origin of that)
They’re all a bunch of dickheads! – the most common!!
Quit your whining ya’ big girl’s blouse! ( this still makes no sense!)
Where’d ya’ get your license? A cereal box!
Yes, the list can go on and on…..
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 50HGreat news for you Dan, looking forward to following 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 50HCongrats Jolie – this is great news for you!! Looking forward to following 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 50Hzhuk wrote:Hey Chejai,
Sorry you’ve come up against another dead-end with your GP & the specialist…its the same thing so many of us were told, same old broken record.
Yeah I might not be “severely ill” either, but who wants to wait until they have sickened to that point? when surely its goitta be easier to be cured before that stage. It just does your head in, doesn’t it
inch: As for ‘Feb’, on the hepaustralasia boards they’re saying ‘May’ now – and who knows how much longer? Doubt the Govt is going to beat Gilead down to a price cheaper than 50K and then it will be triaged…and those not “severely ill” like you and me will be at the end of a bloody long queue.
Of course certain specialists will want to talk up the idea that only they are capable of prescribing & monitoring people…where’s the power in their status otherwise? but I doubt any GP in the country is going to be as experienced and knowlegable as Dr James. Find somewhere you can get a fibroscan, get your stats and get onto the doc…take the power back from those who would prevent you from having control over your own health.
To that end, I got the magic parcel from the postie this morning – incredible to think how much $ those two seemingly innocuous bottles represent! I feel so fortunate and grateful to all concerned, especially to members here and Dr J for his tireless efforts to help us all beat this scourge. Can’t wait tor January and the trial start (and I thought I was impatient before)
Hey ZHUK – Great News you got your parcel – Why is January your ‘trial start’?
I tried printing off the GP Cheat Sheet – It cuts off the whole right side margin and made no sense. I tried to export it as a pdf file and the same deal even though that’s how i got a copy for my brother – so go figure?
I told her about this info sheet but it was very clear she didn’t want any part of it. I suspect the Specialist has put her off – as you say they want to maintain the power. She asked if I wanted to be referred to him privately to get things going but suspected it would be too costly.
I did tell her that the PBS thing is looking much later than Feb ’16 and she did admit that even when things like that do go through it doesn’t mean automatic access. So, when I finished my rant – I wasn’t in a good mood
– I got the impression she understood why I wanted to do this and stop the endless waiting.I wanted to do this before I entered my last Specialist appointment at the RBWH in October – 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.
Turned out the whole ‘getting back to him’ has been the problem, weeks before my GP could finally speak to him BUT I’m not allowed to, no not the lowly patient. I have to wait until next year to see him publicly or pay privately!!The only place in Brisbane to get the Fibroscan is a Private Hospital clinic – you need a Specialist’s referral, especially for any medicare rebate. I paid $250 in early 2013 and don’t even remember if/what medicare rebated.
I’ve been deeply depressed this week, I’m exhausted from all the endless back and forth BS and having to justify and repeat myself every step of the way. I’ve had this for 34 years and dealt with so many DR’s /Specialists along the way. I’m so tired and want to crawl into a hole and give up. BUT, I have this beautiful little boy, 10 yrs old completely dependent on me and I want to be well, not just for me, but for him.
I homeschool him as he has ASD and my plan had been to start in January and get the tx underway, in case i get ill from side effects, before our ‘learning journey’ gets heavy.
Anyway, I will call the RBWH clinic to speak the Hep Nurse today (I put it off for a few days I just wasn’t up to it) and see how I go about getting the Fibroscan referral and the script. If I at least get the Fibroscan I could go the GP2U route with Dr James as Neilo and Flyingfox66 have discussed.
Fingers crossed i don’t hit another roadblockAgain, great news you’re ready to start – looking forward to following your progress Zhuk
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 50HWow! That is fantastic news, so very happy 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 50HWell said 2b. Given my current run-around with those ‘schlubs’
Glad you’re doing great
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
