Worldwide, more Hepatitis C patients have been treated with generic medication than the overpriced branded medication.

Over 90% of patients who have treatment will achieve SVR12 and the data has been presented at the International Liver Congress.

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TOPIC: Why am I afraid to take the medications?

Why am I afraid to take the medications? 1 year 5 months ago #2770

I received this message:
Hello James, I have received my medications but why am i afraid to start them?

I'm posting this because it is actually quite common.

I had one patient's family ring me. He was in hospital having had ascites drained. They had the medications to hand but had been delaying giving them. I insisted they go to the hospital and give them. The patient in question, some 2 weeks ago had a MELD score indicating a 20% 3 month mortality. Things have got better and this risk is now reduced to 6%. Still not great but much better.

For this patient the future looked like a game of Russian roulette with 5 bullets and 1 empty chamber. On treatment it looks like 1 bullet and 5 empty chambers.

I know which game I would prefer.

Fear of the unknown is an instinctive response designed to keep us safe. This website exists in part to help reduce that fear that bad things will happen taking generics. We don't censor anything other than spam, so what you're reading is everything everyone is saying.

These medications do have risks with an approximate 1:5000 death rate on treatment, and a 1:100 rate of significant side effects.

The off treatment death rate is 1:10 and the chronic HCV effects are well known and impact > 1:2 - fatigue, brain fog, depression, loss of hope, fear of infecting others....

I know which set of odds I would prefer.

There is a phenomenon called Stockholm Syndrome where hostages start to feel empathy for their captors. Like it or not HCV has become part of your identity and for some people there will curiously be a sense of loss when they get cured.

The treatment experience is usually nothing short of miraculous with 3 days of feeling slightly under the weather (like a hangover or the beginning of influenza) and then within a week feeling better than in 20 years.

These medicines are possibly the best development since penicillin where people who were going to die miraculously got better.

If you have your medications but are afraid to start consider this. Brave you of several weeks ago decided to take a leap of faith. Scared you today is second guessing brave you.

Listen to brave you. He or she knew best.

Get a glass of water, open the bottles, and take the medicine.

The only thing standing between you and a better life is fear.

Don't let it.
YMMV
Last Edit: 1 year 5 months ago by James-Freeman-facebook.
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Why am I afraid to take the medications? 1 year 5 months ago #2771

  • Chester
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As you ramble on through life
Whatever be your goal
Keep your eye upon the donut
And not upon the hole.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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Why am I afraid to take the medications? 1 year 5 months ago #2772

I wrote this after a doctor friend, who I used to fly with, died in a hang gliding accident.

The Path We Choose

Do not shed a tear for me
For I would not for you
Instead just drink a beer for me
And know well that I knew

Dreams of flight do not come free
There comes attached a price
And we do not do it blindly
We know we roll the dice

Before you sail into the sky
A sky slow to forgive
Ask am I, afraid to die?
Or just afraid to live?

So if you try, to question why
When fate can seem unjust
We take these risks, not to escape life
But to stop life escaping us
YMMV
Last Edit: 1 year 5 months ago by James-Freeman-facebook.
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Why am I afraid to take the medications? 1 year 5 months ago #2787

  • CJ
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That's beautiful Dr James.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Why am I afraid to take the medications? 1 year 4 months ago #6118

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That is beautiful Dr James :)
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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Why am I afraid to take the medications? 1 year 4 months ago #6119

Ive been on this forum for a month or so and have only just read that poem...WOW
SVR 24
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Why am I afraid to take the medications? 1 year 4 months ago #6376

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I hesitated at first pill, fear of the unknown. But I wanted so much to be healthy again. I wanted so much less harsh treatment than interferon.
I refused Interferon 5 years ago when there was no alternative. Now I'm glad I did. Who does not risk anything will not win anything! :lol:
PS
Very true what you say so beautifully in this poem, Dr. James.
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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Why am I afraid to take the medications? 1 year 3 months ago #6416

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You were right about refusing interferon. If I knew about side effects I would never went on it. Luckily after 12 weeks I was pronounced nonresponder and quit therapy. I've met people that was cured by 48 weeks hell of pegi/riba therapy, and year after tx end still have numerous strange side effects.
I've heard of possibility that things can go wrong with new DAA, but that is a risk I'm willing to take.
My viral count is steadily growing and strange headaches, brain fog, and itching are also emerging, so I'm not preparing to wait of a miracle happening in Serbia, like it happened in Australia with PBS approving cheap therapy.
For me miracle started when I found Greg's blog in May just after stopping interferon/riba tx.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
Last Edit: 1 year 3 months ago by Geno1b4.
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Why am I afraid to take the medications? 1 year 3 months ago #6431

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Thanks for this post I am just waiting my treatment to arrive and yes feeling anxious in fact I just wrote a private message about it then found this awesome page (I am a nwebie here and about to get my meds) . I think after relapsing post tx interferon it must be normal to be anxious! This is a great thread, thanks so much loving the affirmation. Happy New year to us all :) :)
Gen 1a
Peg/inf/riba 2012(!?!) stopped at Week 43 due to potassium level ext. low plus other issues (relapse at week 4 post tx, VL120,000) many secondary niggles eg. adenomas.
pre sof/led VL 240,000 Fibrosc F0
Day 25 VL <30
Day 32 UND
Week 10 UND
EOT UND ALT 11 AST 17 GGT 19
SVR4 UND ALT 10 AST 16 GGT 13
SVR8 UND ALT <9 AST 16 GGT 15
SVR12 UND ALT 14 AST 19 GGT 12 Bili 5
EOT +18 ALT13 AST 20 GGT 9 Bili 5
EOT +21 ALT 11 AST 15
Cured at SVR12
Dysplasia Adenoma removed Aug '16
SVR24 UND ALT 11 AST16
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Why am I afraid to take the medications? 1 year 3 months ago #6436

  • zhuk
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Hi Ariel, welcome to the forum.

After failing the old drugs I wouldn't blame you at all for being a bit apprehensive! You know its not going to be anything like that :)

I should finally start tx on Friday,on the Redemption-2 trial...got a few anticipatory butterflies too 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
Last Edit: 1 year 3 months ago by zhuk.
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Why am I afraid to take the medications? 1 year 3 months ago #6438

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zhuk wrote:

I should finally start tx on Friday,on the Redemption-2 trial...got a few anticipatory butterflies too lol

About time :) I wouldn't have had the self control you have once they turned up.

Nothing to worry about you'll be fine mate.
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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Why am I afraid to take the medications? 1 year 3 months ago #6442

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Paul-Jarman-facebook wrote:
zhuk wrote:

I should finally start tx on Friday,on the Redemption-2 trial...got a few anticipatory butterflies too lol

About time :) I wouldn't have had the self control you have once they turned up.

Nothing to worry about you'll be fine mate.

Ha, thanks Paul!

I'm sure I will, appreciate the vote of confidence :)

Definitely the month that took several years to pass 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
Last Edit: 1 year 3 months ago by zhuk.
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Why am I afraid to take the medications? 1 year 3 months ago #6447

  • isaing4
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Hi Ariel and welcome!
Yes, go for your it ! And let us know about your story.
You will see that is an easy treatment and also very powerful.
Happy new year! :lol:
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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Why am I afraid to take the medications? 1 year 3 months ago #6448

  • isaing4
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zhuk wrote:

I should finally start tx on Friday,on the Redemption-2 trial...got a few anticipatory butterflies too lol

Hi Zhuk,
Happy for you!
The world will not be the same after starting the treatment! It will change in a good way.
Happy new year and happy treatment! :lol:
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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Why am I afraid to take the medications? 1 year 3 months ago #6449

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Thanks very much isaing4, 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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