emo London Girl's NHS Experiences

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6 years 6 months ago #5282

I spotted a Cipla med when a friend was having an NHS op a few weeks back,.

Meanwhile, my consultant is trying very hard to put a damper on my plans, so got to do my very best as cannot afford private monitoring. Come on Cipla - Hurry up ! ;-)

ps Quite liking the purple hue :P


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: 6 years 6 months ago by Alsdad.

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6 years 6 months ago #5285

Hi LG,

Before there were better alternatives, my plan was to go to Goa in India where Cipla have huge and highly rated manufacturing facilities. I figured I could have a holiday and find an honest pharmaceutical distributor at the same time. There is also an Apollo International Hospital there supplied by Cipla among others. I liked that plan and I have to admit to a little bit of disappointment that I never had to carry it out, but I'll still take Fedex any time.

As for sweetening up this consultant of yours? Huh. Maybe you'd be better off figuring the cost of 12 weeks in Goa at the Apollo. Over a UK winter, not a bad option at all if you can make the costs work.

dt

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6 years 6 months ago #5286

Thanks dt - Yes, I had dreams of Goa and meds he he but unfortunately life's responsibilities do not make this an option. It will have to be Fed - ex .

Latest on 'consultant' - He just wrote to my GP stating I do not have fibrosis - Huh? (1st Fibro 8.7 early 2014 by experienced nurse who had no trouble getting a reading and 2nd questionable Fibro 6.2 - done by a visiting technician who told me he knew 'nothing about livers" . was in a hurry and got extremely frustrated as he couldn't get a reading and ended up taking it from around the back with my arm down) They do not believe it was questionable and didn't listen to the circumstances Implementing I was being impatient or maybe neurotic or some other condescending notion, for wanting to treat soon . The Hep C Trust advised me to go to PALS - but I am too worn down enough by it to deal with all that. for now at least.

I will look to changing my consultant (Also advised by the HepC Trust) It's all added stress I really don't need though :(
Why would he say this? It's so upsetting. Previous consultant said I needed to treat this year (last year) .

Edit : Sorry I have veered of the Cipla post - but I need all the help I can get, so I need to consider what may be the most helpful pathway, you know?


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: 6 years 6 months ago by LondonGirl.

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6 years 6 months ago #5289

LG

I think that the 'need to treat' should not be a consideration at all, never mind all this about liver fibrosis, etc. There are so many extrahepatic symptoms that the 'need to treat' has no real meaning except as judged by the person who has the symptoms. You have a disease that is curable and you want it cured. That is all there is to it.

Next thing - I've been to PALS. For anybody who does not have the energy to do the full monty with PALS or other authorities, their MP, etc., forget about that route. Obtaining the generics is far and away easier. It does however still leave you with the question of getting your treatment monitored by the NHS. NHS consultants do have the latitude to agree to this is they want to - you just have to find one that wants to. Your big advantage is that you are in London where there is a high concentration of terrific hospitals. You need to start knocking on doors. Maybe your GP would help you once you have the drugs in your hands. Harder to turn somebody away who is going to take those drugs with or without their help. Do your best to sidestep the whole issue of liver fibrosis and concentrate on your quality of life, or lack of. Your GP might know of a friendly specialist somewhere. There must be one for heavens sake.

Good luck,
dt

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6 years 6 months ago #5300

Seeing GP tomorrow, the specialist sent his letter to the GP yesterday, stating I had no fibrosis - Unhelpful as well as untrue. He is giving the GP the impression I am impatient and not really in need of treating. Nasty man. Has really upset me, again. :-(

This is the specialist whose education was funded by a variety of pharma companies.

ps re PALS - Yep, I agree, but this Dr should be pulled up on what he is doing, at least be made aware of the effect of his actions. No I don't have the energy right now, but feel I should, out of principle, you know?


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: 6 years 6 months ago by LondonGirl.

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6 years 6 months ago #5304

oh dear, that didn't work, will try on desktop.
apologies.

Edit : Trying to add a jpg - won't work .

pbs.twimg.com/media/CWSNQzgU4AAcMqv.jpg

OK Done it.

Hooray!

Attachments:

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: 6 years 6 months ago by LondonGirl.

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6 years 6 months ago #5306

dointime wrote:

Hi LG,

Before there were better alternatives, my plan was to go to Goa in India where Cipla have huge and highly rated manufacturing facilities. I figured I could have a holiday and find an honest pharmaceutical distributor at the same time. ................................................. not a bad option at all if you can make the costs work.

dt

This is what I was quietly planning over 12 months ago when my specialist told me about generic distribution for poor countries. An extended holiday in India. Dr James and Greg Jefferys messed that plan up for me .... erm thanks guys :)


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
The following user(s) said Thank You: LondonGirl

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6 years 6 months ago #5312

LondonGirl wrote:

Seeing GP tomorrow, the specialist sent his letter to the GP yesterday, stating I had no fibrosis - Unhelpful as well as untrue. He is giving the GP the impression I am impatient and not really in need of treating. Nasty man. Has really upset me, again. :-(

Hi LondonGirl,

Assuming you have had no further fibroscans since the previous two and that the consultant states NO fibrosis in the letter to your GP then he is either a fool or a liar as those prior readings would indicate at least F1-F2.

In your discussion with your GP tomorrow, I would suggest using the difference between what the (quantifiable) tests state and what he alleges to prove that the consultant very obviously doesn't have your best interests and health at heart. Keep that part of the discussion calm and rational but it would be fine after the GP takes that in to add, as calmly as possible but with feeling, how upset that makes you feel. Then ask for your GPs assistance to find another consultant or specialist as suggested by dointime.

G


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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6 years 6 months ago #5313

It's really odd isn't it - it has really upset me
he is arrogant, maybe he thinks the GP wont know any better?
thanks for your advise, getting anxious re this appointment - ridiculous, but when these things happen , it is hardly surprising, you know?

ps no, no other fibros since and Alt etc have risen since

Edit : Actually, I am wondering if it's a typo, he may have dictated it, and 'no' rhymes with 'low' ??!
I mean, they had my Alt as '21' once when it clearly stated '71' :(
then they sent all the consultants letters to the other side of the country to a person I have never met in a place I'd never been !
So what's the verdict - Consultant or typist? - Either way, it's exhausting

Edit 2 - Decided it wasn't a typo, when I have time, I'll scan it in with all identities removed .


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: 6 years 6 months ago by LondonGirl.

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6 years 6 months ago #5362

Hi all, just want to say - I am so excited for these Cipla meds coming! I have my monitoring sorted - I am on the starting blocks ready to go!!! The thought of living without these symptoms soon has just occurred to me! :)

I have severely dry eyes that I have to put drops in every hour. I've looked it up and guess what, a hcv symptom, attacks a gland or something. The thought of living normally without all the things this virus does to go around annoying your body...wow.

LG, just saying hi, I know I don't post often here and I don't think I've said it but I'm sorry you have such a crappy consultant. I think if they actually care it goes a long way, even if they do feel their hands are tied. You know my situation with my hospital and I'd just like to say I feel very lucky to have a consultant and nurse who genuinely care about their patients.
Good luck with your g.p today, and then you will be on the starting blocks like me!

I don't think I ever introduced myself on the new bit, will have to do that shortly,
Thanks, Deb


Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
The following user(s) said Thank You: LondonGirl

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6 years 6 months ago #5380

Hey Debs , Yes suddenly there is hope :-) Off to GP in a bit, fingers crossed 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
The following user(s) said Thank You: Debs

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6 years 6 months ago #5383

Good news - My lovely GP is supporting me by way of blood tests so long as a spcialist oversees my monitoring :-)
Tearful but happy !


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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6 years 6 months ago #5386

So pleased for you LG! :) It's all slotting into place. Now just the meds!
Deb xx


Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
The following user(s) said Thank You: LondonGirl

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6 years 6 months ago #5394

Awesome news, LG! Really happy for you, must be a great relief after such a long, bloody stressful slog through your confounded NHS system.

Now for the meds indeed :)


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
Last Edit: 6 years 6 months ago by zhuk.
The following user(s) said Thank You: LondonGirl

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6 years 6 months ago #5398

Yes, after the consultants letter I was anxious, GP couldn't have been more supportive and understanding.
phew, I was starting to really get Dr phobia, glad something went well,
last thing you need is that extra stress.

Yes, meds next - Fingers crossed.

ps Being referred to another consultant, GP warned this could take a bit longer than my planned time-scale,
but still, wheels are in motion :-)


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: 6 years 6 months ago by LondonGirl.

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