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Jolie's party 3 years 11 months ago #4135

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Thanks Jolie. I hope my consultant will be supportive as well. In the worst case scenario we have 2 private hospitals in North West and an online service.
Do you take meds first thing in the morning?
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
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Jolie's party 3 years 11 months ago #4138

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I take it at night, this was not deliberate, as had no idea when it was better to take them. I also take them "away from meals" but not at totally empty stomach, like 1 hours after the evening meal, from what I gathered it does not really matter that much when you take them as long as it is done at regular 24 hours intervals.

Doc James said somewhere here that the monitoring can be absolutely minimal, there is a whole thread about it somewhere…if you find it.
My "monitoring" consisted so far with 1 pre tx base bloods taken & then the consultant have scheduled blood tests after week 4, 8 & EOT & then 12 week after finishing, I think.
I have not seen my consultant otherwise for months in person, but I do keep in touch via email if needed, this arrangement suits me fine.
Maybe try to suggest email contact to your consultant instead of appointments & also if he can order all your bloods for the next 3 months ? - there is really not that much need to see a consultant during the tx, except if bloods are really bad, which is most unlikely with those new meds.
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Last Edit: 3 years 11 months ago by Jolie.
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Jolie's party 3 years 11 months ago #4146

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That's great Jolie your now well on the way to recovery, enjoy the ride.
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
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Jolie's party 3 years 11 months ago #4156

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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. :dry:

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
:cheer: :cheer: :cheer:
Last Edit: 3 years 11 months ago by Gaj.
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Jolie's party 3 years 11 months ago #4182

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Jolie wrote:

Doc James said somewhere here that the monitoring can be absolutely minimal, there is a whole thread about it somewhere…if you find it.
My "monitoring" consisted so far with 1 pre tx base bloods taken & then the consultant have scheduled blood tests after week 4, 8 & EOT & then 12 week after finishing, I think.
I have not seen my consultant otherwise for months in person, but I do keep in touch via email if needed, this arrangement suits me fine.
Maybe try to suggest email contact to your consultant instead of appointments & also if he can order all your bloods for the next 3 months ? - there is really not that much need to see a consultant during the tx, except if bloods are really bad, which is most unlikely with those new meds.


Pretty much exactly what I was told at RPA today Jolie; pre-tx/4/8/EOT & post-tx 12wk testing. No need for any other "monitoring" as such unless specific issues arise. On an interesting side note, my specialist did say that they have had more than 80 patients come through the clinic on DAA treatment; most of them via the compassionate access program but some using self-sourced generics and none failed to respond, no matter their stage of illness at the outset.
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: 3 years 11 months ago by zhuk.
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Jolie's party 3 years 11 months ago #4185

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Good to hear numbers treated quoted. And the results! :woohoo:

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
:cheer: :cheer: :cheer:
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Jolie's party 3 years 11 months ago #4233

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Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
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Jolie's party 3 years 11 months ago #4234

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Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
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Jolie's party 3 years 11 months ago #4236

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Thanks everyone for good wishes & helpful thoughts,

Seriously now…
Concerning the monitoring subject while many of us are happy & confident with minimal monitoring I sincerely hope that those who struggle with more health problems then just HCV, that they do make sure of adequate medical support in place before starting tx.
Most of us are of age where HCV could be just one of many health problems we're suffering from, although probably it will turn out that 90% of them were caused by the presence of HCV in the body & those "other health problems" will go away once treated successfully, but some might not.

The same advise goes to people who have added Riba to their party cocktail, as advised by Gaj & need more frequent blood tests as to monitor the possibility of developing haemolytic anaemia & then maybe needing additional meds to address that side affect.
Also people who maybe feel anxious & less confident in general, again might need more support from their Doc just for their own peace of mind.
And lastly those of us who are very sick, maybe on other medications already , experiencing severe symptoms, maybe severe fatigue that is affecting our mental & cognitive abilities, etc would do better with having secured a comprehensive medical support before starting taking generic meds.
It's all just common sense.

As Doc James & many others on this forum said, the risks of not treating HCV or delaying the tx are far greater then treating now, so whatever we choose, we're talking some risks.

May we all be successful to get rid of HCV & get well soon!
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Last Edit: 3 years 11 months ago by Jolie.
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Jolie's party 3 years 11 months ago #4242

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Hi jolie - exactly my thoughts re tx. Very well put! Love your party cats! All the best, debs x
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
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Jolie's party 3 years 11 months ago #4784

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It's been 10 days today since I started tx & there is not really that much to report, the tx seems easy, very easy as compared to what I went through 10 years ago on Interferon & Riba, even remembering it makes me feel unwell.

I'm able to carry on working full time, I did not have to stop, something I had to do on the old tx.
I noticed I have a lot of more physical energy & stamina & carry on doing things well into late evening where for the last 2 years my day finished at 4-5 PM & after that it was "relax time on my sofa", as too exhausted to even talk with friends over the phone.
My phone was mostly off the hook in the evenings.

My mood seems to be much more positive, I appear to be more patient where before I'd easily get irritable or upset, calmer with sort of strange sense of feeling "content" rather then the habitual restlessness.
A sense that "everything is OK", something I have not experienced for a very long time.
As others reported I have to be careful not too do too much when I feel well.

There is still a bit of brain fog that comes & goes, but before the tx the brain fog was constant, it never went, even after many cups of coffee.
That's another thing, I completely stopped drinking coffee & black tea 10 days ago, I just don't need it anymore, where for months I drunk 2-3 coffees per day as without it I was not able to work or function at all. Coffee & all sorts of "healthy stimulants" like Ginsengs, etc. was part of my daily diet before.

The first few days on the tx I felt a bit druggy & foggy, to be expected, now it all feels a bit lighter with long periods of feeling well…& occasional tiredness, but it's a different type of tired, like being tired after working all day & doing other things.
It's still early days, but so far I'm very happy with the way the tx unfolds, in general I do feel better then before treatment, I sleep better, where before I had chronic insomnia.
My first bloods are scheduled in 1.5 week time, but I already do somehow "know" this is really working, this stubborn virus is being hammered.

I wish everyone on tx an easy ride,
jolie xxxxx
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Last Edit: 3 years 11 months ago by Jolie.
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Jolie's party 3 years 11 months ago #4786

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Good luck Jolie. You are 2 days in front of me :-). I don't have that extra energy,yet, but sure it will come.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
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Jolie's party 3 years 11 months ago #4790

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Great report Jolie - Thank-you.
So glad you're doing well xx
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Jolie's party 3 years 11 months ago #4794

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Hi Jolie,
I'm glad you are doing so well and don't have any sides.
I felt a lot more energy from the start of my treatment, but now I have started to notice the luck of energy again. Only 2 weeks to go for me tho.
Virus not detected from 14.10.2015
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Jolie's party 3 years 11 months ago #4795

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Hey Nadia, Was just thinking of you today, Will email tomorrow x
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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