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frigtened by possible severe irreversible side effects 7 years 6 months ago #22020
Morning London girl 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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22021
| Good morning Countless 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 The following user(s) said Thank You: coral, Ariel, Gaj, Lynne-Francis-facebook, beaches, rohcvfighter, fitz, Donna |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22053
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. 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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22055
| 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 |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22064
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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22068
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!!! | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22069
| 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 |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22073
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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22079
| 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 |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22089
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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22094
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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22099
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 Love from Ariel PS so much good advice here already shared by others 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 | |
frigtened by possible severe irreversible side effects 7 years 6 months ago #22117
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 following user(s) said Thank You: LondonGirl, fitz | |
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