Jolie - FixHepC - Page 3 of 14

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7 December 2015 at 8:26 pm in reply to: on tx “pulsating, heart beat, speedy feeling” #5432
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
hi & thanks all for replying,
Just a quick note to say that it is def the blood monitor machine that has too small cuff size for my arm ( max 30cm), something I noticed after I brought it home & did further reading on the subject.
Too small arm cuff will give you too high reading & too large cuff low reading, so the sleeve needs to be just right for the width of the arm. I was not aware of this & was not advised properly when buying it at the pharmacy.
I assumed all cuffs that come with BP machines are of universal size.
Am not panicking, am off to pharmacy now to have my BP taken & then return the digital machine back to shop.
My BP was always normal mid reading & 3 months ago the latest.
Will get a better BP machine/bigger cuff & try again.

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.
5 December 2015 at 7:43 pm in reply to: Jolie’s party #5297
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
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.
5 December 2015 at 7:18 pm in reply to: Jolie’s party #5295
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
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.
5 December 2015 at 7:17 pm in reply to: Jolie’s party #5294
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
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.
5 December 2015 at 5:43 pm in reply to: Sof+Dac combined tablet RVR #5293
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
Wov!, those are fab results,
I wish now I waited for this combo pill to be available, but impatience got the better of me….
Best of luck with the rest of the Trials Doc, although you probably don’t need it looking at the results so far.

Thanks for your passion & courage in helping to get rid of HCV everywhere, you’re truly amazing human being

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.
5 December 2015 at 5:22 pm in reply to: Dan’s Twinvir story #5291
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
smooth sailing Dan

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.
4 December 2015 at 12:37 am in reply to: Angus’s 1st treatment test results #5208
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
absolutely amazing result Angus, congratulations, a new single super powered combo pill for a week ? just incredible,

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.
3 December 2015 at 11:44 pm in reply to: Jolie’s party #5201
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
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.
3 December 2015 at 11:12 pm in reply to: Gamma GT #5196
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
As am sure you know if you had cold then the LF would be slightly elevated, hope you’re not worrying
Great bloods otherwise & feel better 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.
3 December 2015 at 11:03 pm in reply to: Jolie’s party #5194
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
OK, time for some serious tx reporting now… Day 2, same as Day 1 , a bit foggy, a bit groggy, slept 11 hours like a baby with only 2 pee breaks, Had a dull headache the last 2 nights & my heart beat seems to be much stronger & louder then normally, esp when lying down in bed – can hear it in my head. Feeling very tired but calm & at peace.

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.
3 December 2015 at 10:38 pm in reply to: Jolie’s party #5193
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
hi everyone & thanks for your kind support, hope everybody is well at various stages of tx & post tx ?.
It’s great to finally “join this great party” ! Hi Dan,
Sorry to hear you are still looking for a doc to monitor you, it’s seems to be really a pot luck who you get in your area of the UK.

To answer you & other people asking me similar question,“what I said to the Doc ?”.
For me it was not so much what I said but about who was listening – a person who was open minded, caring & willing to help & lucky for me he was also my consultant.
If I happened to get allocated to a consultant with a more conservative, “do it by the book”, fearful persona, I’d probably be in the same situation as you.
We’re all “people”, even the docs, some are more open minded some less for a variety of personal or professional reasons.
I think the more of us here in the UK keep asking the sooner the situation will change for the better.

I didn’t do much talking, I just sent my consultant an email, not expecting too much in response, bearing in mind that 6 month earlier I did mention to him that I was seriously considering buying generic meds if NHS don’t get their act together soon.

In that email I explained that I already imported the generic meds & am ready to treat & asked if I could be helped with the blood monitoring.
I reassured the doc that the meds have been tested & gave him the link to Doc James’s blog on this forum for further details. I did mention Doc Freeman as our global champion & said we need a few docs like him in the UK who would support us. That’s about it, I think.

Hope you’ll find someone 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.
3 December 2015 at 12:44 am in reply to: Jolie’s party #5094
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
OK, tx started at last & am feeling over the moon, as it has taken more then a few months to do research, find this forum, source the products, etc, etc.
Big thanks to all who treated before me & shared your stories, this gave me courage & faith to follow this path as well rather then wait.
Also gratitude to Doc James, his team & all on the FixHepC.
I have been very lucky to find very supporting NHS consultant in the UK who will be motoring my tx.
I feel foggy & groggy so far but sort of strangely calm inside….maybe a sense of relief…

Best of luck to everyone !

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.
2 December 2015 at 11:57 pm in reply to: Dan’s Twinvir story #5087
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
Great Dan, congrats!
I started Sof/Dac last night, planned to start later this month but moment the meds came through the door I just swallowed them, could not resist…no more waiting,

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.
30 November 2015 at 8:26 pm in reply to: Sirs treatment journey! #4903
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
very good news Sir, congratulations !
It’s great to hear yet another person clearing the virus successfully,

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.
30 November 2015 at 7:54 pm in reply to: Emilio’s Place #4898
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
about time Em, I was looking out for the good news from you, well done !.

you said:
“a journalist the other day around often being asked ‘how did you get the disease?’ Well we know that most get it from IV drug use and smaller percentages from elsewhere, ie. childbirth, transfusions, etc. But the question is sometimes loaded and attempts to divide us into separate categories – you deserve this! and you don’t. So I’m representing all of the former IV drug users and junkies who ‘do not deserve this disease’. Hence emilio (the junkie heper) Johnson. Happy to represent the so called lowest denomination. Fuck them! Em”

The more interesting question is how did the virus get into the “junkie” blood in the first place?? why stop there?
The HCV virus was in the blood’s general populations long before people started to inject drugs.

The natural history of the virus tells us this virus probably came from the African jungles in the last century, jumping from animals to humans & then brought over on slave ships to the West. Some articles even mention the Egyptian Mummies.
Then the 1 & 2 World War soldiers getting wounded, getting exposed to a lot of blood via open wounds, transfusions & then passing it on to others via blood donations & so on, as the virus was not discovered until long after the wars finished.
The whole thing is rather much more complex then the cliche: it’s “junky disease”.

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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