Forum Replies Created
-
AuthorPosts
-
Thank-you DT, yes I think i am in shock!
Good to hear your opinions and your own experience, thank-you.I am not thinking so clearly right now, there I was, thinking I had it sorted and really optimistic and wham – Have to consider treatment options all over again. Hoping the scan nxt weekend will give a more clear picture.
I have always suspected my F score was wrong .Hi M, Yes, it was Dr F who thankfully took the time to notice things weren’t right and looked into my blood tests pre tx.
As I say, I had looked into bloods myself a while ago and asked questions at every consultation I could, but was met with ‘You are mild fibrosis, you can wait’ without any testing, nothing! I got in touch with my previous brilliant consultant, a Professor, now retired. he told ne to get an USound and to ‘push’ for treatment.(just had that, they said they couldn’t see any cirrhosis ). It seems now, the new HepC consultants just glance at your last fibro and then put you back on hold. This is why I decided to take matters into my own hands and start treatment, instinct and quite a bit of reading. The time difference with Aus is a little tricky, I am just aware that I need to order some meds and soon, in case anything goes wrong with delivery and just talk it over a bit, you know?
Have changed uk consultant now who is being very helpful, but it’s always worth asking for fellow patient experience no? It does help me to think more straight. I thank you all for that
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 HepCThanks DT
Dr F thinks I am F4 from pre tx bloods
Don’t understand why it wasn’t picked up on before.
I have been questioning the whole thing for over a year, got nowhere.Having said that, recent USound said I didn’t have cirrhosis, but they didn’t look sure and asked if i’d ‘had any operations’ so I guess there was some scarring spotted.
Hopefully, if no cirrhosis and a few RAVs 12 weeks of Sofo/Led then 12 of Sofo/DAC may do the trick?
My concern is, if it doesn’t I’ll have RAVs to both Led & DAC by then.
If I could have a gene test now, surely any RAVs twards DAC would show up as I’ve been on Sofo/Led?
That could well be helpful and help my decision, you know? Think you can also check resistance to Simeprevir?
It’s all rather confusing right now, need to work it out, and soon due to needing to order more meds so no gap in treatment.This new LiverMultiScan nxt weekend should give a much better picture of liver health hopefully, albeit kind of a bit scarey !
ps Alt 14, so at least something’s workingAnother thought, if no cirrhosis is found, would it not be possible to extend current treatment fir an extra12 weeks? and maybe lead out with some Riba? or woukd it be better to change mid tx?
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 HepCThx Ariel
The concern could be natural resistant genes, malabsorption or fibroscore closer to or actually F4.
Have never trusted that last fibroscan, but my requests don’t reach the powers that be’s ears.
As it stands I am am a slow responder and one of the 1-3% who don’t respond like everyone else
Next VL test is 10 weeks, I’d rather have one at 9 , but hey ho Need to see what results do and I feel, try to get a gene test for mutants! not sure how to go about it. I have an MRI nxt weekend, maybe that could throw some light on the subject.
Wary of collecting more ‘mutants’ !
Looks like I’ll deffo be doing 6 months, not 3 .BIG 2 all.
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 HepCThank-you all
It looks like I’ll be extending treatment.
Working around a few ideas this weekend.
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 HepCNot good news this end, VL still detected – 68 at week 7ish (day 46)
It’s steadily decreasing, but slowly.
All LFTs normalMean corpus haemoglobin (MCH) up a small amount.
Feeling rather down and still suffering sinusis, headaches (even after paracetamol) , blocked nose, teeth ache, tinitis and loss of appetite.
Has anyone else been detected at this stage at this kind of amount?
Looks like I’m in a small minority.
Looking at the figures, I hope to be UND at week 8, it’s been going down at around 100 ish a week since week3. Thank God no NHS 8 week restriction. Will need to ask all Drs advice and decide what to to this weekend.
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 HepCSo sorry that you’re suffering Hope – I’m sure things will improve , you are right at the beginning and will come to realise these meds are making you better
I guess you know about breathe in through your nose and slowly out through your mouth? I helps take the edge off it if you can focus on the slow breathing. Lavender oil is very relaxing too, sprinkle about the place or burn in an oil burner. I know these aren’t the perfect answer, but they may help you to relax a little.
I’m not sure re sesame either, maybe someone else will know.
We’re all here to support you however we can
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 HepCWell dt, all these can contribute to an easier time of it with a little effort. My last ‘bruise’ was about 12″ long by 4″ wide – black and yellow, with a spectacular lump in the middle on the vein where they drew blood around the size of a gob-stopper – and it hurt like hell for 2 weeks – So although I dealt with it at the time, although not without some anxiety, I didn’t really fancy that option the next time round I must say ! We can but try
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 HepCYay – Good for you DT – I mean, why should be made to feel ‘difficult’ when we know we need a butterfly needle – I mean, we are of a certain age, I’m sure we’ve worked out such a simple thing after some (bad) experience. So will that be on your notes now?
On Twitter, I get alot of medical conference, think-tank, nursing news etc latest – There has been one article recently, “Do patients that complain get a better deal” – The answer was a resounding ‘Yes’ – This from medical staff. They said it was easy to forget people/things unless patients brought things to their attention. I can understand that, they must be so busy, but the point is, they are aware and some opinions even seem to welcome it to help improve things.
Happy I encouraged you in the right direction – and do let me know next bloods if they remember !
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 HepCWow – Loving reading your posts Honker
Kangaroos, dolphins and penguins and all in the sunshine – A tad jealous shivering here in England !
but really , what a wonderful way to treat yourself Glad flu has gone now.Keep these posts coming, really enjoyable reading and please sent Chester my best wishes too.
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 HepCGreat reading you guys
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 HepCHi Zhuk, So good to read another one UND – Well done you & my very best wishes to your Mum too
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 HepCMy very best wishes to all of you at EOT Tina, Dan, Joy – I’m not good at remembering who I’ve sent good wishes too, but at least I have 3 if you right here in one post
Anyway, big to all and I’m thinking all of you brave crusaders
LG xxx
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 HepCIt seems like only yesterday we were debating a good pathway to treatment !
Well done Dan
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 HepCchooks bum mouth
– Love it !
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 HepCHi Pat, There do seem to be a few with raised BP, some have been really high.
Last check mine was up, but not dangerously, must get it checked again.
It seems to me it’s the girls who seem to suffer this more or are the boys just being quiet?
Maybe it’s something to do with lower body weight ?
Hoping yours stays steady for you
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 -
AuthorPosts