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TOPIC: frigtened by possible severe irreversible side effects

frigtened by possible severe irreversible side effects 2 years 7 months ago #22020

  • countless
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Morning London girl #flower
Did they know at work you were ill?
Do you have good support network in real life?
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22021

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Good morning Countless #flower

The answes to your questions are no and no.

The best support I have had during the past year are from the good people of this forum, a few on the UK forum, MonkMed and Dr Freeman.

Over time I have been lucky to have found a few kind & supportive people within the UK NHS among the 'less supportive' - There are some amazing people out there, but you need to seek them out. Unfortunately I cannot name them, but they include a patient advocate medic, my GP, a lovely specialist nurse at 5+ months in, an awesome IV spec. nurse and some extremely pro-active Drs in the health system who are sticking their necks out to help HepC patients here in the UK.

In a personal sense not really and at work, none, not possible.

I have learned over this journey that the best people to support you are those who are walking or have walked in your shoes. At 12 weeks post treatment, I am very glad I limited who I told. Apart from anything else, HepC is a complex condition and naturally many people don't understand the ins and outs. Many don't understand how ill you can feel when you are seemigly ok and it can be labourious trying to explain. I told 2 people, one started out supportive and then stopped asking and changed the subject, the other supportive but didn't like to talk about it. There is one more person, who I will lose soon and I find hard to talk about, they went untreated for years due to medical / admin errors / lack of knowledge and bureacratic restrictions mainly, and are losing their battle. Devastating.

As I have stated in my blog update this morning, this is the best place you can be for advise and support, that is my truly honest advise from my experience over the past nearly 3 years since diagnosis, the last year here and from the bottom of my heart.

LG
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: 2 years 7 months ago by LondonGirl.
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22053

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I am very sorry to hear about your friend. I guess there is nothing one could say or do in times like that. Hope their remaining time is as good as it can be.Hugs.
Re support - I thought you have not gone into details , I wondered whether they known you were ill wihout specifying what with.
With both of us leaving in the UK and me travelling to London for seeing a doctor I thought you could advise me on some uk/doctor specific issues, you may save me some of the mistakes which I am bound to do. May be using private messages facilities on this site or by phone? Or may be even meeting in person once I am in London. I am 43, have a daughter who is 11, father who is 87 and lives with us, cat, rabbit and a boyfriend who just moved in with me 2 weeks before my diagnosis If you would rather not I will absolutely understand. #flower
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22055

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Hi Countless, I have sent you a private message 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
Last Edit: 2 years 7 months ago by LondonGirl.
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22064

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Written you an email. :)
Off to play squash now
When I am doing mundane activities like sports , parents evenings , movies watching , dancing I forget life is finite ..
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, Lynne-Francis-facebook, fitz

frigtened by possible severe irreversible side effects 2 years 7 months ago #22068

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Speaking from my own experience, in spite of all the potential benefits, deciding to treat and then making the leap of faith to treat with generic DAAs was a surprisingly difficult decision.

A friend of mine framed it this way..."When you've woken up for 30 years (or alternatively, since diagnosis) to a punch in the face - life is hard to imagine without it"
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 2 years 7 months ago by fitz.
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22069

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Hi Fitz,

deciding to go with the generic drugs was in my case also difficult to make.
I had so many questions orbiting in my head and what was even more difficult was that I had nobody to ask for more details.
People around me, some of them working in the field of medicine, were skeptic or knew very few about HCV generic drugs, therefore the constant message I was getting was "be careful..." which honestly was not much of a help.
It was like this till I decided to get in contact with both, Greg Jefferys and Fixhepc. From that moment further I had my source of reliable information which was confirming what I was reading on other places about the HCV generic drugs.
So the very first and bold decision I took was to simply launch a question. Writing to them took me at that time way out of my comfort zone .... but doing this opened the way for me to be were I am today: EOT is almost 12 weeks behind and with very good blood test results at 10 weeks after EOT which I hope is the precursor of UND.

The minimal advice I can give to someone seeking treatment is to at least try to discuss about the HCV problem.. Do not fear to ask questions! There is nothing to lose if you ask, but there is so much to loose if you do not...your health

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22073

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In my case decision was very easy. Once diagnosed I found hepctrust website , fixhepc was mentioned there. The first healthcare worker I spoken to since diagnosis was proactive, given a phone call to a hospital department where she was going to refer me , made enquiries and had medicine sourced from abroad mentioned to her by whoever she spoken saying it was genuine. At no point I doubted I want it treated or thought redemption trials is in any way inferior option. It will not mean I will not get treated as I am far more afraid living with it and dying from it.
It is just that I have fear of everything at the moment... But thanks to all your replies I am far less afraid of this particular issue now.
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, Ariel, rohcvfighter, fitz

frigtened by possible severe irreversible side effects 2 years 7 months ago #22079

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Hi Countless,
I am really impressed to hear that your decision and the support you received were so easy. This makes me think that things are really changing and nowadays (at least some) people do not have to struggle as 6-12 months ago in order to get a prescription and medicines. Wow, the word about generics and fixhepc is spreading perhaps much faster than I imagine...

About your fears,....., well, it is normal to have. Initially happened to me too, but in time, once I started to feel better, saw the good blood test restults, things have changed. The level of optimism increased and that was really fantastic. Too bad I can not describe so accurately in words how I feel right now...

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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frigtened by possible severe irreversible side effects 2 years 7 months ago #22089

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countless wrote:
It is just that I have fear of everything at the moment...

Sometimes I wonder if that is one of the many hepc symptoms
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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frigtened by possible severe irreversible side effects 2 years 7 months ago #22094

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I think it is a symptom of a situation in which loss of control is mixed with physical vulnerability. In my case a huge fear for my career is in mix as well , my heart sinks every time I see a letter that I do not know where it comes from or a caller ID which is unknown.
I had a massive trauma 20 years ago and after that one I could not watch TV at all first as everything was just too stressful. The next boot of vulnerability happened after I had my daughter. I remember being in a hospital, coming across an article in a nespaper about indian woman that was beaten so badly for fiving birth to a girl instead of a boy that she was unconscious for a while and her baby died because she could not look after her. I dissolved in tears at reading it and until now when I remember that article Ibstart crying. Do not think it all was hep c related..
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, Ariel, fitz

frigtened by possible severe irreversible side effects 2 years 7 months ago #22099

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Dear Countless
I reassure you that I lost hearing from peginf
My eyesight was affected from peginf
BUT
I'm cured from DAAs and feeling better all the time. IT'S A MIRACLE
I suffered anxiety from peginf it's still an issue so I can read the anxiety you feel in your posts.
My life is so much better now.
Treatment with DAAs has turned everything around and I can see clearly now.
I'm in a similar profession to London Girl and no way could we ever disclose our illness in our field. Now I am HCV free I am even creating new work and think of it as a chance to try something which I might have never experienced.

I believe it's the only choice
Treatment on DAAs is for now as so many of we lucky recipients can testify and well, before these came along tx was no picnic that's for sure!
I look forward to your starting treatment and feeling new hope and starting to heal from the trauma too. I saw a psych for that part it was awesome support :+1:
Love from Ariel
PS so much good advice here already shared by others #flower #love
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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frigtened by possible severe irreversible side effects 2 years 7 months ago #22117

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Yes I am looking forward to start of treatment, fingers crossed it will be shipped tomorrow, worried while waiting. Trying to figure out whether part with some money and have abdominal ultrasound asap or try to get it on the NHS, tough call
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, fitz
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