emo Can hep C cause strange symptoms? (Yes!)

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6 years 7 months ago #2010

Couldn't agree more Nadia - I too have withdrawn from family and friends - not really 'living' at all.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 HepC

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6 years 7 months ago #2014

Get treated now zhuk. Doctors telling you it's ok to wait because you're F0 should be ashamed of themselves. Hep C is a global infectious disease epidemic. When a cure comes along regardless of the infectious disease, we used to know how to deal with it ie. Treat everyone asap. We did it with polio. We did it with smallpox. Maybe because of the effectiveness of vaccines we've forgotten how to address these problems.

I think there are compelling reasons for everyone to get treatment. They just differ from individual to individual. So the decompensated cirrhotic needs to get treated so they don't die. For me, borderline F3/4, I needed to get treated before I developed full blown cirrhosis. You, like all of us will never got the years of lost quality of life back. But your compelling reason is that you can walk away from this with virtually no lasting liver damage if you get treatment now.

IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I'll be very, very surprised if you can access them. Hell, I was told ages ago I'd only have a pretty good chance of getting them.


Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Last Edit: 6 years 7 months ago by Chester. Reason: Spelling and grammar
The following user(s) said Thank You: Alsdad, LondonGirl, zhuk

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6 years 7 months ago #2018

zhuk wrote:

Yep as I mentioned I have 'travelling' pain and strange sensations, buzzing etc quite often at night which keeps me from sleeping sometimes. And its hard to tease out what could be the chronic pain and what could be the Hep C. I do get that "itching" sensation in the liver quadrant, is that also a thing with some people? Sometimes some 'stinging' as well, however a GP told me that wasn't likely to be my liiver...which I found hard to believe as it is spot-on in the right area lol

I've had this for many years but over the last 2 years it's progressed leading to some sleeplessness. It's very hard to describe it to someone even my wife who has been UND since 2012 and had no liver issues so I don't bother, just suffer in silence. It was particularly bad a few days ago but for the most part it feels better since I started treatment 2 weeks ago. I have to have regular medicals for work so I tend to keep quiet about my liver issues unless I freak out my GP.

I think that stinging sensation which i've had for many years is mild occasional bleeding from the liver, I could be wrong but I have a gut feeling that i'm not.

cheers


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
Last Edit: 6 years 7 months ago by Alsdad. Reason: fixed quote

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6 years 7 months ago #2019

zhuk wrote:

Hi everyone,

New member to the board, hoping I can learn more about the possibilities of treatment as they arise. Have been HCV positive since 1988 with Gen 1a and treatment naive, largely due to a significant history of depression & other mental illness aspects, which my Dr sees as pretty much contraindicating 12 months of the pegintf/rib combo.

My doc (specialist at a major Sydney hospital) put me off the whole idea of accessing overseas meds at an appointment today,

I'f you have the cash to get the generics I would do so now Zhuk, as Dr John Freeman said in the radio national interview they are living in cuckoo land if they think the new meds will be listed in the PBS anytime soon !

I've been getting the wait it's coming for years now and just been getting sicker and sicker. There is no difference between the generics and the "genuine" meds. The generics work and you will get rid of the disease unless your very lucky and won't have to speak to your specialist again.

cheers


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: zhuk

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6 years 7 months ago #2020

Chester wrote:

.....IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I'll be very, very surprised if you can access them. Hell, I was told ages ago I'd only have a pretty good chance of getting them.

I think it's time to start reporting doctors who lie to their patients to their regulatory body.

The following user(s) said Thank You: LondonGirl

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6 years 7 months ago #2022

Chester wrote:

Get treated now zhuk. Doctors telling you it's ok to wait because you're F0 should be ashamed of themselves. Hep C is a global infectious disease epidemic. When a cure comes along regardless of the infectious disease, we used to know how to deal with it ie. Treat everyone asap. We did it with polio. We did it with smallpox. Maybe because of the effectiveness of vaccines we've forgotten how to address these problems.

I think there are compelling reasons for everyone to get treatment. They just differ from individual to individual. So the decompensated cirrhotic needs to get treated so they don't die. For me, borderline F3/4, I needed to get treated before I developed full blown cirrhosis. You, like all of us will never got the years of lost quality of life back. But your compelling reason is that you can walk away from this with virtually no lasting liver damage if you get treatment now.

IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I'll be very, very surprised if you can access them. Hell, I was told ages ago I'd only have a pretty good chance of getting them.


Hi Chester, many thanks for your comments and encouragement.

Yes it doesn't make any sense, does it? This is what I couldn't seem to get across to the doc yesterday - that I am unlikely to come under the criteria for treatment, if it does go through. Yet she insisted in a rather blase way that no everyone would have access to it, If we look at the two comparable countries who have certified these drugs for use, Canada & the UK, they have a triaged system of need deciding who gets treatment - its not a free for all there, so how someone can believe that it would be so here, well its a bit beyond me really lol

I am very glad that you were able to get treated, being at that borderline fibrosis stage! Hope you are continuing to do well :)


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 #2024

Paul-Jarman-facebook wrote:


I'f you have the cash to get the generics I would do so now Zhuk, as Dr John Freeman said in the radio national interview they are living in cuckoo land if they think the new meds will be listed in the PBS anytime soon !

I've been getting the wait it's coming for years now and just been getting sicker and sicker. There is no difference between the generics and the "genuine" meds. The generics work and you will get rid of the disease unless your very lucky and won't have to speak to your specialist again.

cheers


Hi Paul, thanks too for your reply


It really seems to be 'ostrich-territory' with them on this, doesn't it? Bury their heads in the sand against all logical argument...I wonder what my doctor would have said if I'd been facing a cirrhosis diagnosis - you can still afford to wait? I guess she would :blink:


As far as financially accessing it goes, I am on a disability pension so those sorts of funds are beyond my reach, however my mother (who is also a pensioner) has said that maybe she could liquidate some investments she has, so it could be doable in that respect. Right at the moment I have another pressing health issue to address, hopefully it will turn out to be the best case scenario and can be dealt with asap - then I will have to start sorting out everything that is necessary to look into treatment. Which seems to be a fair bit heh. I will also run the idea past my (newly acquired) GP and see if she is favourable to the idea.


Just as an offhand question (now my mind is turning over the options seriously!), having read that India will kick off the production of Harvoni around late Nov or December does anyone have opinions on whether it is better to source from China or India? Realising that one comes in tableted form and the other an API.


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 7 months ago by zhuk.

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6 years 7 months ago #2027

I think the Twinvr might come in cheaper than the current generics Zhuk, where do you live ?


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

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6 years 7 months ago #2028

I'm in Sydney.

Yes I'd read that the Bangladesh meds are a little more cost-effective, wonder if the Indian ones will be comparable. I had a look at Greg Jeffreys site; it seems that exporting from Bangladesh has more difficulties, maybe why people are hanging out for Harvoni from India instead.


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 #2270

Hi zhuk, your disease pattern (genotype, vl,f3 etc). I am sick of feeling crap and its just getting worse. I agree that free meds aren't close enough and anyway I would be a low priority
For all these reasonsI am just going to go for it with the buyers club. Have my script and just need to arrange payment . onwards and upwards!

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6 years 7 months ago #2271

Good for you lizziechan. Agree with you, why wait until you continue to feel worse, and end up with a less favourable prognosis for treatment? After lying pretty dormant for so long, my symptoms seem to have ramped up a bit in the last 2-3 years. The only other option if they eventually get onto the PBS is wait for your disease progression to worsen sufficiently to the point of being eligible for treatment. I can't see how anyone could believe this was tenable when there is an alternative.

Definitely onward and upward...all the best with your treatment lizzie.


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
The following user(s) said Thank You: lizziechan

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6 years 7 months ago #2279

I think it's time to start reporting doctors who lie to their patients to their regulatory body.

I couldn't agree more Alsdad ,although just naming them might be suffiecient.The regulatory body would side with them.
But in essence they are" well meaning killers",slaves to the propaganda line put out by HepC Aust ,and doctors receiving research grants from Big Pharma etc.or whatever else overseas.
It appears more and more doctors that were once reticent are changing their views,and all encouragement should be accorded them.

Re symptoms which is the essence of this thread.
I did not really take them seriously until 3 days into the sof when they dissappeared like magic.Muscle aches,sleep disturbances,a nightime pain in the chest once or twice,which I thought was a heart attack and wasn't .Bouts of tiredness, a chronic toothache once that my dentist could find no reason for and wrote me off as neurotic.I just thought they were all part of the ageing process and to cut the crap and live with it.
I have overall never felt so good since starting tx although the riba drags me back a little.
I had the" wait wait "from my GP,and had to bully him into writing some scripts.He now freely writes them out for others and is a convert.
If you can afford it,there is absolutley no sense in waiting.If they were put on the PBS tomorrow there would still be a long queue,form filling and more waiting.


Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
The following user(s) said Thank You: tweakmax, zhuk

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6 years 7 months ago #2280

dont wait anymore :)

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6 years 7 months ago #2291

Miko I have tooth aches too without any reason


Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured

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6 years 7 months ago #2293

There is one symptom I forgot to mention,and I note no-one else has.My sex drive over the last few
years plummeted from normal plus to zero minus.I note it is listed amongst the known symptoms in the book..
I wonder if others have experienced it,or if it just a topic that is taboo.


Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise

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