emo Liver Clinics and Generic Rebels

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6 years 7 months ago #2222

Hello again I made an appointment with a Specialist here in Bendigo just to arrange for Fibroscan etc. I am Genotype 1b with 3.13 million viral load. The Doctor at the Royal Melbourne was happy with my Fibroscan and also with the ultrasound....it appears that at present I have a fatty liver (which many people have anyway) but otherwise no obvious hardening/cirrhosis etc. I am aware just how "lucky" I was to be diagnosed through a bloody test which showed up liver function wasn't so good. I am not seeing the Specialist here again because he tried to more or less say that because my first husband was an IV drug user that is where I caught the Hep C (even though I told him I didn't use drugs and never had). Anyway I have a supportive GP and will be starting the med soon I hope (still waiting for delivery). I will contact the Hep C Clinic here in Bendigo to let the Hep C nurse know what I am doing. It will be interesting to see what sort of reaction I get.

Will post again once the meds arrive.

Lynne


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!

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6 years 7 months ago #2229

Hi all, If there is anyone in New Zealand needing aftercare and monitoring please feel free to PM me for details of a private clinic in Dunedin who are only more than happy to support and care for you during and after treatment with generic medicine x


SVR 24
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  • Vicki
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  • Geno type 3b. On sof/dac for 12 weeks.
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6 years 7 months ago #2236

That sounds like you've got a good handle on it Lynne. You've done your research and gotten as much info there is to go ahead and get cured!!!
Who cares how any of us got it. The past is history, right now we can celebrate the wonders of modern science and each others full recovery. x

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6 years 7 months ago #2245

Your right Vicki, doesn't';t really matter now how I got it...also I apologise for the typo (bloody) instead of blood. I did do my homework because the whole thing has totally "done my head in"....however since I found this forum and spoke to Dr Freeman I feel like there is now a light at the end of the tunnel. I cannot imagine how those with very bad livers etc. must feel. And yes, thank goodness for modern medicine!


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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6 years 7 months ago #2262

Hi Lyn good on you. Dont let authority undermine your intelligence in taking this opportunity. Royal Melbourne hospital was not impressed with me. A cold response from the specialist, followed by a phone call by the clinic nurse in condescending tones telling me not to go ahead. 18 Days into it I know it is working. No real side effects apart from a bit of tinnitus. Feeling better than the last 2 decades. Had it for 35 years . Go everyone dont listen to them they dont walk in our shoes.


Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
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6 years 7 months ago #2265

First world country doctors look down on 3rd world medicine....is quite sad

We are too sheltered by the system

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6 years 7 months ago #2345

Hello again

I have received my medicine today. 400mg Sofosbuvir and 90mg Ledipasvir (separate bottles). I am arranging next week to take a weeks' leave from work and will start my medicine today week. I am very nervous about side effects but I know I need to take the medicine to get rid of this awful virus. Reading your posts has certainly helped.

Wish me luck!

Lynne


Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
Last Edit: 6 years 7 months ago by Lynne-Francis-facebook.
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6 years 7 months ago #2346

Gd luck!

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6 years 7 months ago #2350

I went to UK liver clinic yesterday.
Told 'no treatment for minimum 8 months '
And 'if I wanted to be monitored I would have to pay privately IF there were any Drs with space'


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

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6 years 7 months ago #2360

Hi Lynne
In the lead up to my meds arriving (arrived yesterday) I was on a roller-coaster of emotions. Wondering if I would handle side effects, how I would cope..on and on it went…its part of it. The apprehension, fear and uncertainty. I just rolled with my feelings as they came and went.
It is a huge thing that your doing..and good on you for taking your life into your own hands and not waiting for the PBS. I wish you well.

I have just taken my first dose so we will be travelling this path at the same time.


GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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6 years 7 months ago #2371

I am surprised poodle, cause my dr gives me heaps of support. I was under the impression that they supported people on generics. change doctor's. tell the nurse and dr that I get heaps of support there. kindly

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6 years 7 months ago #2373

LondonGirl wrote:

I went to UK liver clinic yesterday.
Told 'no treatment for minimum 8 months '
And 'if I wanted to be monitored I would have to pay privately IF there were any Drs with space'


LG

That's appalling LondonGirl. So no (what we call bulk-billing) GPs can monitor your bloods either? I always thought the NHS had one up on Australia with dental care etc but this has really turned my head around on that fact. I hope you can find a way. good luck.


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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6 years 7 months ago #2380

Hi LG,

The UK NHS is not doing any monitoring anyway for people on Harvoni who have no other complications. They'll only do a few blood tests if you are on riba as well. No PCRs during tx. You get the baseline bloods and then you get the pills and you get on with it. So you are not missing much.

dt

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6 years 7 months ago #2408

Hi Zhuk! Real waste of NHS money, costly consultant sitting there all day, not treating any patients.
He also said ' We are not interested in symptoms, only the liver'
I said 'What if the symptoms concern the liver'?
He just stared at me and asked me if I've read much.
My response 'I've been reading every day for the last 18 months but I am not a Dr'
He was basically saying, they will no longer check you out either,
So if you have any HepC complications, forget being looked at.until they make you so Ill they can no longer ignore.
He told me to 'go to my GP.
Felt like saying 'I did, and he referred me to a hepatologist' but managed to keep quiet.
My old hepatologist was lovely, It seems they are laying off the older, more qualified & experienced Drs and replacing with young, txt book less qualified types to sit in the hospital all day telling patients they cannot treat them yet.

Don't believe what your read about dental care here, if you live in a town and are not lucky enough to have a good NHS dentist for years, you will pay double the price of most other Euro countries for a private one.
When I've got rid of this virus, a trip to Spain, Germany or Poland etc to fix my teeth .
There may be a few NHS dentists around, but they're not the dentists you'd choose to visit!


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 7 months ago by LondonGirl. Reason: typo
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6 years 7 months ago #2409

Hi DT, I do have a couple of concerns and a symptom slightly worrying me, it may well be nothing, but you would think you could ask your consultant? If they're not treating you and not observing your liver or symptoms, what is the point of going to see them? And why are they being paid to see you? A letter or phone call would have been the cheaper option all round.

I wasn't offered bloods or fibro, no observations taken even though my previous consultant had noted a few. The point is, I was told 'I am not going to do anything for you in any area' for 8 months and you are right in that he said the nurses would be dealing with it. I asked if he could guarantee 8 months , he said No'.

It is the feeling for many patients here, that when we wait months for an appointment, travel to it etc and they make you feel guilty for asking for any help in any area and like you are a worthless beggar that I find immoral.


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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