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Afraid to take the meds due to severe anxiety 6 years 5 months ago #13806

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I hear you, Mike, about families getting stressed and it not being a help to you.
My mother had already died when I discovered I had HCV and I never told my father because I knew he'd worry.
I still think that was a good call, but when he was diagnosed with cancer I said to him that I knew what it was like to be staring down the barrel of what was most likely going to get you and he just got angry and said how could I possibly know. At that stage it was about him and not me and I decided it was not the time to burden him with my medical story when his was so much more critical.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #13807

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Hi Hope,
by now hopefully ;) things are on the up for you and you end up having an easier time of it
Fingers crossed for you #love #flower
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #13818

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Hey Hope
keep strong
you are killin it
keep talking to forum
you will receive answers
X
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #13846

You got this Hope!
Keep on pushing.
We are here for you.
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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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Afraid to take the meds due to severe anxiety 6 years 5 months ago #14786

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sooo...I'm starting week 9. Had a terrible urinary infection 14 days ago wich had to be treated with antibiotics. All in all my body seems to adapt so less side effects past week.

Today I got back from my hepC Doc and finally got week 4 blood tests. I'm not undetected. I still got it. Don't know how much because they didn't measure Viral load. Today they took my blood again and I should know on Friday if after week 8 by any chance it's gone.

Doc was pretty terrible to me, she yelled at me on the hallway so everbody could hear it: you're still positive!!

Inside she lost it even more, saying that she was in Barcelona last week and there was a debate about generics also and everybody was establishing how irresponsible this selftreatment is and that it's not known what's inside this drugs. Also that Chinese drugs are the worst. She managed to scare me and I doubt my decission of selftreatment...especially combined with the fact that I didn't manage to get rid of it at week 4.

The Doc said that if after week 8 I'm not UND than that I should stop eating this. Any thoughts on that?

Well....past 2 month weren't a picnic for me and as it seems that the last one ain't gonna be much better.

I also have high glucose wich I never had before...apart from my high level of iron. Anybody else got this?

Thanks...
Hope.
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)

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Last edit: by Hope.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #14787

Hope, first of all, your doctor is an ass. Having claimed to have been to Barcelona yet doesn't recognize THAT THE DRUGS WERE TESTED FOR PURITY AND VALIDITY. You keep keepin' on. You should have told her, "Yeah I'm positive. Positive I'm gonna keep taking these CHINESE DRUGS!" Lol.
When you clear, you will have the last laugh. And please, take it when it happens! ;)
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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Last edit: by splitdog.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #14790

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Hi Hope,

I am so sorry to hear that you have been subject to such appalling behaviour by your doctor. A doctor is supposed to put the best interests and privacy of their patient first. Yelling at you in the corridor so everyone can hear and scaring you is most definitely NOT in your best interests or good for your health!

Secondly it would seem that the "everybody" at Barcelona that she was talking about didn't include Professor Laurent Castera who is the EASL Secretary General (and the host at Barcelona) who stated:

"There is a clear role for generic treatments such as these for people with Hepatitis C across the world. The implications of increased availability of these drugs could be enormous, presenting more people with the possibility of a 'cure' for what is often a debilitating condition,"

Or perhaps the numerous links to various reports as listed in the first post on the following thread and many others:

fixhepc.com/forum/media-news/924-upi-on-board.html

Now, those are all well respected people, journals and medical media reports. Can your doctor show you ANY evidence to support their claim about what everyone was saying/doing? Something in writing or in the media that supports these verbal claims? Otherwise, I would suggest he/she has absolutely no plausibility in his/her claims.
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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Last edit: by Gaj.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #14791

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Well, today's experience was terrible - I guess what hurt me the most is that she looked like she's enjoying the fact that I didn't get rid of the virus in week 4 with generics.

But the fact that I'm not UND stays and is not really promising either - can somebody copy me a link where Dr.Freeman explained how the odds are lowering if you're detected on 4th, 8th week? I tried to find it but I didn't :/

Not a fan of "what if's" but what if I'm not UND ob week 8 either? Should I really stop?
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)

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Afraid to take the meds due to severe anxiety 6 years 5 months ago #14794

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Hi Hope,

Yes, I just came back to state that I along with 18% of others was still detected at week 4, this did not worry me at all because I knew I would (and did) reach undetected. Here is the link for Dr James thread.

fixhepc.com/forum/viral-load-and-svr/287...-what-to-expect.html
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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Afraid to take the meds due to severe anxiety 6 years 5 months ago #14798

Dear Hope, What a horrible experience - I really feel for you having been through similar treatment with a previous consultant myself. That Dr is supposed to be caring for you, I hope when this is all over you will raise a complaint.

Please don't stop! I was still detected at 8 weeks - and <12 at 11 weeks and I have extended treatment. Not everyone is the same, the worst thing you could do is stop at this point. As you haven't even had your VL figures, you could be <12 or 32, or some really low figure and you still had 8 weeks to go when the test was taken !

It must be quite scary to have this Dr. - It's a shame you can't change. Is there any other way of getting your own VL test privately? Did you get your meds through Redemption /Fix Hep C? You could ask Dr Freemans advise or Dr Debasis from MonkMed. I'm sure though, that any normal Dr would request the result of you VL test before advising or say keep going until your next VL test.

What is interesting though, is I had antibiotics mid treatment. I read somewhere recently from an official paper, that antibiotics can mess with the Abbvie medicines, I am wondering if they can also affect other treatments, even though they say they don't.

It is hard to tell anything without those blood test results though. Your Dr may have done a qualitative VL test which would just say detected or undetected rather than a VL Quantitative count maybe? You should ask her - really.

I think you need advise from a different Dr really Hope. Keep talking the pills and try to get some other advise I would suggest. #love

lg

ps I can't see your Genotype etc in your profile...if you can pop that in, it could help people when reading your posts. #flower
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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Last edit: by LondonGirl.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #14815

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Hi Hope.

Oh wow, I wouldn't be going back to that specialist, what a creep.
Can you copy what Gaj wrote & email it to her? or just never go back, preferably.

She sounds either very ignorant or very just bitchy. I wish you could get a different doc, why not get onto the GP4U sight & see Dr James or his associates via Skype, they'll look after you.
You don't need a cruel specialist. Who needs that on top of everything?

As the others said, you could just be slightly over the negative number, who knows without a quantitive load measurement, but G 3 is difficult to destroy as quick as the other G types so don't despair, you'll get there, even if you may need to prolong tx a little?

Try to cut down on sugar intake & iron intake.
Try to eat a low GI diet, it WILL help.

Good luck & DONT give up :)

Love Cindi x ( Oh, you are G3 aren't you?? maybe I got it wrong?)
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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Last edit: by CJ.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #14828

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Hi all, yes, I'm G3 - I don't know why you don't see it in my profile - I see it :)

I can't really change my doc because she's alpha and omega in our country. I have to indure somehow all her harsh behaviour towards me for now becuase she is at least giving me all the tests for free. They are pretty expensive here. And I anyway have at least some kind of monitoring (although for every high level of anything in my blood tests she says that there's nothing she can do since she doesn't know what I'm taking).

I'm on a low carb diet, my intake of sugar is low, and I drink plenty of water...

I'll wait till Friday to see what my outcome on VL is and then turn to GP2U if needed.

Until than I'll try to stay sane....

Thank you for your support!
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #14847

With GT3 you do not have a 100% chance of being less than LLOQ ie <15 at 4 weeks. The chances of being undetected are even less.

That's why I never do a qualitative test at 4 weeks - I do a QUANTITATIVE - coming back at 20 (when it was 1 million) is a lot more reassuring than coming back detected - which the majority of GT3s still are...

Here is what the SOF+DCV kinetics look like in both GT3 and GT1. Notice that GT1 responds faster but both are better than SOF+PEG+RBV. Note that 1.18 on the log scale is <15 and the line below that is the UND line.


YMMV
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Last edit: by DrJames.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #14856

About 30 years ago I developed anxious symptoms due to feeling faint and about to collapse etc. Sought help from all sorts of medical experts who could find no physical explanation so put it down to stress.
There was no test for HCV then.
Many years later one of the worse symptoms of chronic hep c and liver cirrhosis is tiredness and feeling I'm about to collapse and die.
I've learned its natural to feel anxious about this and also that anxiety which can lead to panic attacks and all sorts of related phobias seems to accompany many chronic illnesses.
These days when I feel like collapsing,I lie down and let my body feel whats happening.Usually I fall asleep,sometimes for an hour but most often only 10 minutes waking to feel much better.
Listen to your body,rather than trying to fight those feelings.
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #14978

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Well ... good news. Week 8 UND :)
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)
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