emo Monitoring question

  • Bloot
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6 years 9 months ago #2296

Hey mate
i think it's a bit of a personal thing really
For me, the beauty about all this that I am the master of my own destiny up to a point
I'm just going to pop 1 pill of each a day or as prescribed on the pack if there is one (they should arrive within a week)
i will be getting a blood test at weeks 4, 12, 24 + 12 weeks or so after tx has finished
I am having a fibroscan on January 11 and an appointment at the liver clinic in about a month

I am prepared to be given no support during tx, so any support i receive will be a bonus
One of the worst things about my previous tx was being owned by the Department of Health for the duration of tx
If this time they choose to ingnore generics, then that's their problem of ignorance and at least i won't have to make the 45 min drive
Once tx is finished i will be seeing a naturopath with a medical degree to give myself the best chance at rejuvenation

Alternatively, you could go to GP2U and get an appointment with Dr Freeman to discuss any concerns
It costs, but you get advice without the ignorance and any scripts/ testing you need


52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
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6 years 9 months ago #2298

Cheers for your reply Bloot.


Yeah, considering my low fibrosis reading I don't anticipate any real problems (though I guess every individual is going to react differently)

I'm inclined not to go the clinic route, although purely for peace of mind it might be good to have their input and somewhere to oversee it. But since my GP isn't prepared to do the full-monitoring (can't blame her from a possibly insurance pov if that's how she sees it) and I will be taking part in the Redemption trial, maybe linking up with Dr Freeman might be the best way to go.

Appreciate your opinion mate :)


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

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6 years 9 months ago #2300

You're welcome, Zhuk
it's $90 or so, but it's cheap peace of mind just to speak to the doc about any concerns

As far as clinics go, I think it's the luck of the draw
For example, a friend of our is a social worker at the HIV, Viral Hepatitis & Sexual Health clinic on the mid North Coast
Apparently on Greg J's blog it was mentioned that some nurses there were very helpful
She wondered who they were because most of the ones she dealt with were completely unhelpful and rude at the mention of generics
(this may have changed a little since a memo went around supporting the support of people on generics)

My wife worked in the health system and morale is generally low
People get stuck there and become jaded or think they know everything and patients are stupid
You just have to try and get them to help where you can
But generally I've found - if you pay you have options and better advice
If it's free you are told what to do and it may not make sense

Anyway, good luck matey - you're on the right path


52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
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6 years 9 months ago #2301

Yep, I think so too :) I'm very lucky to be reasonably minimally affected after having had the virus 27 years now, and the likelihood of public treatment being extended to those in my position is pretty low, no matter what magical rabbit the clinics assure us is going to be pulled out of the Ministerial hat any moment now heh

As it happens, I had to ring up the clinic today for my VL results (which no one has ever bothered mentioning before) and I thought I may as well put the hard word on the doc regarding if they would agree to monitor me if I sought treatment - remarkably she said yes! although they warned me to be very careful and couldn't condone such a decision...hey I understand that. But it wasn't a knockback by any means.

But yeah - I call that a win for sure! Looking at how other Govt centres people have mentioned here have reacted, definitely. Its gotta be a tough field to work in (bit like the chronic pain docs - they know they can't cure you, just help you live with it)

However here is the one rare chance in medicine to potentially cure people, which is pretty bloody amazing.


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
Last Edit: 6 years 9 months ago by zhuk.

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6 years 9 months ago #2302

I'd call that a win for sure
And while they monitor you, being in a category with a very high success rate, they will see how well the generics work
They will then be forced, just out of common sense and humanity, to support anyone else in the same position
So it's a win for all :cheer:


52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
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6 years 9 months ago #2303

Gotta love that rationale, Bloot!

I couldn't agree more...I know they have another couple of patients (at least) they are monitoring, who are worse-off than I am. So yes hopefully this will be instructive for everyone all round, and they will look favourably on others as they come through.

What's more I guess we are giving them a bit of experience in dealing with the new meds, for whenever they finally make it into the public pipeline. Definite win :)


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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6 years 9 months ago #2306

Zhuk,Your GP is a cowardly whimp.As for saying she doesn't know enough about the medications,thats crap,and she shouldn't be practicing medicine.It's got nothing to do with her insurance.
Doctors have a computer on their desk with instant access to all the latest "How to treat"Information.And they are all very aware of the generic scenario that is happening.
One suggestion I might make, is to find out which doctors members of the Gay community who have HIV are going to.They have a knack of finding out who is genuinely on their side.
Generally such doctors are likely to be more compassionate,better informed,and are less likely to be adverse to generics.
Many go to conferences on HIV which often include HCV as treatment mechanisms have a lot in common.
Just look for a new GP Zhuk.Sit down and explain what you intend to do,and if there is one iota of hesitation on their part,
get up and walk out.You will find the right one sooner of latter and be very grateful when you do
Good luck.


Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
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6 years 9 months ago #2307

Thanks miko. It was actually my presuming re insurance heh as I couldn't think of any other logical basis for refusal...but she just said she didn't feel she had enough experience. Well, no one really has all that much in Aust atm do they! Yet there are docs who are willing to read up on the published material and take it on.

Since I got a reasonably favourable response from RPA (if a little guarded) I think I will stick with them. They are already monitoring at least a couple of patients on generics, so I will get onto one of the nursing staff on Monday and give her the lowdown. I reckon your suggestion about locating HIV docs in the gay community is a good one, you're right they often see HIV/HCV infected patients concurrently and are a bit more proactive all round.

Will see how it goes with the hospital...and the meds are a fair way off yet. Cheers for your reply mate :)


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

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  • emilio
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6 years 9 months ago #2308

Hi Zhuk

While my GP is James I don't expect too many visits re monitoring it's really about pathology referrals for me however we do chat broadly about tx, the site, buyers etc. My view is that we all know enough about the disease to realise if something does go pear shaped where we should get help. So I take my meds, minimise the sides if any and know your clear date (within a week) to to determine 12, extension or adding addition ammunition. Test at 12 weeks post tx and home free (hopefully). Bit like a hang gliding without a parachute lol, just the way I like it. Em


Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
Last Edit: 6 years 9 months ago by emilio.
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6 years 9 months ago #2310

You Nailed it Emilio I think as most of us will have bugger all side effects except for a little insomnia some will of course get some sides, if so then maybe a GP or clinic visist would be advisable IMHO.

cheers


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
Last Edit: 6 years 9 months ago by Paul-Jarman-facebook. Reason: Speling

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6 years 9 months ago #2313

Yep the insomnia slowly crept up on me. I guess im having 6 hours of broken sleep. I feel good dispite this and thinking theres a bit of good stuff in the meds. Energy levels not being affected by the lack of sleep. Em


Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.

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6 years 9 months ago #2317

"Hang-gliding without a parachute" Haha I like that!

Thanks Paul and emilio. Honestly yeah I think that is a pretty sound approach, I'm not expecting much if any real issues but if the hospital can do the necessary tests etc it saves me having to doctor-hunt for someone who is willing to take up the bat. I've also got a secondary condition which has suddenly appeared, which I've gotta find out if it would preclude starting treatment - and my current doc doesn't seem to have nearly enough urgency on that IMO lol


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

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6 years 9 months ago #2448

Hi,
I am in the U.S. and have two docs monitoring my generic treatment-my local, long-time GP-who diagnosed me, and my GI, who has written me 3 scripts for HCV treatments , which she fought like hell to get approved for me, but were denied after exhausting the appeals process. When I told them my plan to import ditectly from Mesochem, the GI said fine, as long as she could monitor the tx. So my GP orders the blood work, checks it out and sends the results to my GI several hundred miles away. We did a pre test and will do a 4 week, 12 week,12 week post and 12 month post tests.
Now, my GI said the tests were for two reasons:
1. To see if the virus is being destroyed effectively
2. See if these really new and really powerful drugs are having some strange impact on something else, like glucose or potatsium levels, for example-all those things they can check that have norms.
That's what they told me the monitoring was all about in MY situation: F-1, Tx naive, good health, vl-1.6 million, 62 yo.
Good luck!
Mike


This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24

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6 years 9 months ago #2478

Helo Zhuk,

Royal Prince Alfred did good by me and I suppose a thank you to them for allowing me to live a while longer is in order here.

Being a General Practitioner with all its expectations as to up to date medical knowledge is a big ask. One told me years ago that the main requirements for being one was to be reasonably bright and have a good memory. I don't really know all the ins and outs of prescribing generics with specialists so I won't comment.

One thing though, when I went to my G.P. (yes life and melanoma checks goes on) and told him what I was doing, he described it as me "taking control of my health". I agree and think it s better me do this than Gilead et al.

Yours


GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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6 years 9 months ago #2504

Cheers for your reply sabrecat.

Completely agree on the taking personal control (now that we are blessed to have the tools to do so) Yes why the hell not have the choice to take the power of a potentual cure into our own hands, if it exists! And the fact that a company would actively prevent people from accessing that cure is pretty despicable. Hello corporatism lol


Glad to hear you came out the other end with a positive outcome and RPA gave you the help to do it. More fortunate than others have been in some areas for sure, with more uninformed and resistant bits of the medical profession, but you're right in saying that its a task and a half for GPs to be on top of all developments, not least enough that they feel able to take patients on in an untested scenario. Just glad the hospital seems amenable. I will get onto one of the nursing staff and lay all the current cards on the table - hopefully I can start treatment by the roughly assigned timeframe.

Fingers crossed :)


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

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