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TOPIC: Why am I afraid to take the medications?

Why am I afraid to take the medications? 5 years 11 months ago #6450

  • LondonGirl
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Hi Ariel, I am also waiting for my treatment to arrive, there are a few of us and after all the struggle of trying to access the medicines and medical support and learning so much bout all the ins and outs of the virus, I have a mixture or calm, excitement and nervousness.

We can all support each other through this wonderful site.
My very best wishes to you for an easy ride and the best possible outcome.
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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Why am I afraid to take the medications? 5 years 11 months ago #6570

  • Ariel
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zhuk wrote:
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

Thanks heaps Zhuk, Greatto be affirmed and know I am not the only one anxious about our HepC messy damned story ....possibly changing my pain management meds in preparation for this treatment has had an impact on my nervous system too...
Wishes for all the very best on tx to you :)
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Why am I afraid to take the medications? 5 years 11 months ago #6572

  • LondonGirl
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Hi Ariel & Zhuk

We will all be in this together, I'm hoping to start in about a week.
Of course we are nervous, we feel fragile
but we will be strong and 'find ourselves' again

Big Love
Susie xxxx
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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Why am I afraid to take the medications? 5 years 11 months ago #6573

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Don't sweat it Ariel - you will be fine! I have a pain condition too, but my meds don't counteract - what issues do you have if I can ask?

Had no misgivings taking the first dose this morning at all...83 to go :)
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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Why am I afraid to take the medications? 5 years 11 months ago #6574

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LondonGirl wrote:
Hi Ariel & Zhuk

We will all be in this together, I'm hoping to start in about a week.
Of course we are nervous, we feel fragile
but we will be strong and 'find ourselves' again

Big Love
Susie xxxx

You said it LG! We can only go up from here, I agree. All for one....one for all etc :)

Really pleased you've managed to get on the trial, and beaten the NHS into at least a kind of submission for your monitoring...we aussies don't know how lucky we are, seriously.
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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Why am I afraid to take the medications? 5 years 11 months ago #6576

  • Joy
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zhuk wrote:
Had no misgivings taking the first dose this morning at all...83 to go :)

Congratulations Zhuk, at last. You have been SO patient.

Wishing you and LG and Ariel (and all others starting Tx) minimum sides and maximum speed to SVR.

Happy New Year.
NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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Why am I afraid to take the medications? 5 years 11 months ago #6578

  • Woobia 22
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I have just joined and very interested in what has been said regarding und etc.
I had a 48 week course last year under compassionate grounds and after 2 weeks I was clear, I completed the course in July 2015 and was pretty happy with the nil side effects and getting free at last. I had a Specialist meeting on Sptember 18th 2015 and In had 8 questions for whomever I got to see.
1st Q was can you give me an update on how I am going etc. Prognosis. His reply was I had 6 months to live and the hep c was back and had come back late july. I saw Red and absolutely abused him for not telling me earlier as one day in August my 11 yr old daughter was running late for school and raced in to brush her teeth. Later when I went to brush mine there was already a green one on the sink and I just thought thank christ i am hep c free. I had never spoken or saw this guy before and he fires back saying he is not impressed with the language I use and the way I speak, I lost it again and abused him some more calling him Gutless for not letting me know etc but the worst thing is that he had put my family at risk. He stated he was following the law in that it has to be face to face etc. one more flight to Perth wouldnt have killed me, I felt completely hopeless and shattered.
This is why I find this interesting when someone says why continue treatment, I now am being treated by a Live Liver Transplant Surgeon who is in total agreeance with me that we attack the Hep C first then even if the medication is too much we will drop the Nexovar first. So I purchased 10 months supply and starting on my 2nd week as I only got back Xmas day and have a couple of massive hernias to struggle with atm. I would be prepared to take it for the rest of my short life I have left if it meant my family is safe.
Anyone else having a 2nd go at the miracle drugs I would love to hear what you have been told and where you are at with the hep c.
Regards Barry
First diagnosed Nov 2012 with Hep C 1a End Liver disease
Failed peg and Sof/dac
Given 18 mths to live Aug 2014
Failed sof/dac July 2015
Sep 2015 given till March 2016 to live as nothing they can do
Sourced a supply of sof/dac from India told I was a fool by staff at SCGH
Been in a coma twice 2016 6 stays in Hospital
Last 4 weeks have been unreal back into life again
Hope No One else is treated like Shit by Med Specialists as the Nurse are UNREAL The Good Doc Freeman is genuine Barry Ashton

Barry Ashton
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Why am I afraid to take the medications? 5 years 11 months ago #6579

  • splitdog
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Do you have cirrhosis?
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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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Why am I afraid to take the medications? 5 years 11 months ago #6584

  • Woobia 22
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Yes i am at end liver stage, My new doc told me they had cut out the left side of my liver.
First diagnosed Nov 2012 with Hep C 1a End Liver disease
Failed peg and Sof/dac
Given 18 mths to live Aug 2014
Failed sof/dac July 2015
Sep 2015 given till March 2016 to live as nothing they can do
Sourced a supply of sof/dac from India told I was a fool by staff at SCGH
Been in a coma twice 2016 6 stays in Hospital
Last 4 weeks have been unreal back into life again
Hope No One else is treated like Shit by Med Specialists as the Nurse are UNREAL The Good Doc Freeman is genuine Barry Ashton

Barry Ashton
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Why am I afraid to take the medications? 5 years 11 months ago #6592

  • Gaj
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Hi Barry,

While not strictly retreating with DAAs per your question, I was part of a 2013 trial with Peg/Riba + Daclatasvir for 24wks. Relapsed straight away at EOT. Early in 2015 tests showed me at increased risk of HCCs and one was picked up in late April and I had segment 5 resected early June. Then in Nov I had a RF ablation of another HCC in segment 6. I'm currently six weeks into 24wk Sof/Dac/RIBA retreatment which I expect will clear me of the hep c. Worst case, my specialist tells me, the reduced activity of my liver not having to fight the virus so hard will reduce the risk of further HCCs during that period and maybe new and even better drugs already in development will become available.
I agree that your specialist meeting in September was less than ideal and you should have been called in earlier although they may have been "waiting to see" given the initial detect was so soon after EOT. Also, something I have discovered in the last 12 months is that cancer is a emotion driving word. You can see its impact on everyone when the subject comes up, often with the 'shutters' coming down even when people do know what to say to you.....and the medical profession are no more immune than anyone else. Many of their patients don't want to know and/or need support and hope rather than total honesty, but if you are in the latter group you need to make sure that your treating doctors understand that and are aware you want any new information asap and they are reasonably comfortable with providing it.

If you can provide some details of your prior history and treatments in your signature panel that will also assist people to answer any questions you have. Scroll to the top of the forum page and click on Profile tab, then click Edit and enter your password twice, then the Profile Information tab and scroll down to the Signature panel at the bottom of page.

Best wishes
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: 5 years 11 months ago by Gaj.
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Why am I afraid to take the medications? 5 years 11 months ago #6626

  • Ariel
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Joy wrote:
zhuk wrote:
Had no misgivings taking the first dose this morning at all...83 to go :)

Congratulations Zhuk, at last. You have been SO patient.

Wishing you and LG and Ariel (and all others starting Tx) minimum sides and maximum speed to SVR.

Happy New Year.

Thanks heaps Joy, London Girl and Zhuk... fantastic to have your first tabs today yew! I am feeling less anxious now...the messages are telling me that it is going to be okay....nothing like intfn/riba etc etc1 Bring it on...looking forward to your updates this week Zhuk :)
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Why am I afraid to take the medications? 5 years 11 months ago #6628

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Cheers Ariel :) Yes at least its an easy date to remember heh...and I will make a dedicated tx thread so as not to hijack other members lol

For the record I have felt no effects whatsoever today - in other words just what I expected. I can imagine the experience of the hell of Int/Rib is probably seared into your synapses! but seriously the new drugs are a world away from that - you have nothing to be worried about on that score. Look forward to you receiving your meds and hearing about your journey to health too. God knows its been a long time for us all :)
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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Why am I afraid to take the medications? 5 years 10 months ago #7911

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Hi I haven't been much on forum recently - my habituated response to excessive work demands and emotional pain has been to retreat into poor and/or over eating, escapist reading and sleeping, if I can. I have this week lost yet another dear friend, to this dreadful disease. However its time I finally put my case to forum.
I commenced sofosbuvir/daclatasvir treatment on November 20 - but not without some difficulty. I received the meds when I also read of some adverse, even fatal, treatment events – I “froze". The incidents were few, usually within the first four weeks & likely not caused by the meds - with patients like myself - advanced with the disease (B&C child-pugh).
With a Meld score of 11-12, this information threw me into a dilemma. Since 2011 following decompensation from a coma/ICU delirium experience I have been focused on accessing IFN free treatment. I never considered the risk. Now with the dac/sof in my hands I thought “what if this sends me into liver failure. Will it become evident gradually so that I have time to cease the meds OR will my liver silently go into overdrive, then collapse. ”. I questioned whether I risk narrowing my longevity to a matter of weeks – or refuse the meds and maybe buy myself a little longer. To any reader, this may seem ludicrous – but it is how I felt. I am aware that the 2011 ICU trauma still affects my confrontation with any medical prospect.
I finally discussed this dilemma with Dr Freeman. We are very fortunate to have such a competent and compassionate physician so dedicated to both the HCV cause and our forum members.
I took the meds & two days before Christmas my bloods indicated I was still detected but with a PCR under 15 (previously 805,000). I have had some side effects nausea, fatigue, insomnia a few headaches and indigestion – nothing dramatic. I have had days where I have felt uncommon exhilaration; but frequently weary. I have felt particularly poorly in the last two weeks and don’t know how much this is attributable to the recent dietary lapses; already mentioned - or the Meds. Today I have some ascites (distended belly/midriff & discomfort), my weight has increased. I woke with a few small forearm “spots” where the blood has seeped to the skin surface – one like rash - the others more a “bruise”. I decided to wait till tomorrow, & if more symptoms - I will have FBC/ EFT bloods (albumin, INR, platelets) checked & consult whoever is available on GP2U.
However tonight I find myself “freezing” again – not sure whether it is a good idea to take my meds. Don’t want fluids shifting from their vessels into bodily tissue or cavities where it doesn’t belong. I have re-commenced a completely salt free diet today & eaten small amounts. Should todays symptoms be solely attributable to a dietary lapse I am re-stabilising - but if it is a function of the meds – then I doubt I should be taking more. I am one hour past my dose time and prevaricating - It seems I am not yet free of the apprehension which initially delayed my treatment for a week.
I was reluctant to share this story; and my vulnerability ... but this phenomena is universal and we learn this from our own and others' experiences. Why are we sometimes afraid ???? – sometimes it is a simple response to a perceived threat - and/or its memory - past trauma can certainly mess with one’s head. .
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
Last Edit: 5 years 10 months ago by Archer. Reason: correct
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Why am I afraid to take the medications? 5 years 10 months ago #7928

  • LondonGirl
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Dear Archer, So sorry to read. I take it you don't have local consultant help?
I would indeed keep up the healthy living as much as humanly possible.
So very sorry also to read of the loss of your dear friend.
I hope you get good medical advise quickly and your fears can be calmed and current health can be checked out physically.
I wish I could help more, hopefully someone will be along soon to advise.
Can you afford a private consultation locally?
LG #love
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
Last Edit: 5 years 10 months ago by LondonGirl.
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Why am I afraid to take the medications? 5 years 10 months ago #7959

  • Joy
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Archer wrote:
I was reluctant to share this story; and my vulnerability ... but this phenomena is universal and we learn this from our own and others' experiences. Why are we sometimes afraid ???? – sometimes it is a simple response to a perceived threat - and/or its memory - past trauma can certainly mess with one’s head. .

Thankyou Archer, for sharing your story and your vulnerability. You have helped me understand more about this disease and its insidious nature. Your fear is completely understandable and my heart goes out to you. That ICU experience must have been horrific. I can't give you any medical advice, but there are a lot of supportive people here, and Dr James of course.

Bit concerned about your 'excessive work demands' - is there a way you can take time out for healing?

My condolences for the loss of your friend.

Fear can be paralysing, but the one sure thing about it is - it passes.

Hope you are feeling better today.
NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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