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

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6 years 9 months ago #2351

It's not really a strange symptom but I think almost everybody is scared when they are diagnosed with hepC. I learned via a phone call from my GP, and remember feeling like a Hiroshima bomb had gone off in the room. I was gripped by terror for weeks afterwards, sitting up late into the night studying the disease and possible cures. Virtually my only solace was a blog written by somebody who had gone down the road already and had actually been able to write about it on the way. Then I found the forums and other people in various stages of dealing. Coming to terms with my possible future was a slow and angst-filled process, not helped by the hospital dragging their feet about the tests and not knowing for weeks whether I was good to go for a while or near to death's door.

But those days were before we had a CURE. There's no need now for fear. There's no need for stigma. It's just an infection, like any other infection that we've learned to get on top of. It is going the way of all the other feared infections - TB, pneumonia, etc. that used to routinely carry people off. All that remains is to get our heads round that, get tested, get cured. Easy as ....

dt

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6 years 9 months ago #2374

dointime wrote:

You'll know before that. Death is not the problem actually. Trust me. It's what happens to your body on the way there. I won't list the symptoms of advanced liver disease because I think you are afraid enough already to be in denial about your hepc. You can look them up for yourself. I sincerely hope that you spare yourself that journey, stop drinking, do the tx and thank your lucky stars that now we have the meds to let us escape this nightmare disease. dt

Ha - yep
Exactly what I was thinking last night before bed, high on sugary fruit juice :P
It's being sick with no way out that scares me

Anyhoo, my fibroscan in Jan may be so bad that I'm forced to make a few hard decisions - so until then...
My poor wife - I'm either a fitness fanatic or piss tank. Never one to do things by halves lol

Thanks for the advice everybody - it's appreciated


52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
Last Edit: 6 years 9 months ago by Bloot.

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6 years 9 months ago #2379

What if your fibroscan is not so bad? Does that mean your decision will be to wait until it is?
Are you bipolar?

dt

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6 years 9 months ago #2381

This is exactly what all those who do have the DAA's already regulated in their countries face - you won't be covered by your insurer/public health system unless you are "sick enough"

This will inevitably be the case here, whenever the meds are approved. My thinking is - get treatment if you can at whatever stage of your progression...which all the more urgent if your results aren't favourable. Give yourself a fighting chance for survival and recovery.


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 9 months ago #2382

I feel obliged to step in and say something here in relation to Bloats experience as I have understood it.
I trust it will be taken in good faith.

In my 30 years of Hep C experience there has been 2 quite distinct MORAL messages ( as opposed to scientific or rather based solidly on empirical data) that I have repeatedly received from medical professionals as well as others.
I personally have never found them helpful.

They are as follows:
1. You must never drink ever, it is bad (evil) and bad things will happen to you.
2. The method by which you contracted the disease was a bad thing to do (evil) and in some way you deserve all you get.

After all of these years; numerous medical professionals, failed interferon treatment, sentenced to death at 30 if I continue to drink (now 55) various symptoms etc..... I feel I have never benefited from receiving these messages. No matter how well the intention.

I actually think moralizing health issues is dangerous in and off itself.
This is a health issue not a moral one. (my belief)
Any research I have ever read suggests that statistically your odds of recovery are significantly improved as a correlation to reduction in alcohol consumption. However this does vary a lot from individual to individual.
Given this it is probably a good idea to reduce alcohol consumption quantities however don't stop enjoying life (this one is not a dress rehearsal).
And had there been clean injecting equipment available when I was experimenting in my curious youth I probably would have never contracted the disease in the first place. It would be a damn good idea to ensure clean injecting equipment is made available to the next generation of curious youth.

Ok Got that of my chest, now I might have a glass of white because I enjoy it.

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6 years 9 months ago #2383

dointime wrote:

What if your fibroscan is not so bad? Does that mean your decision will be to wait until it is?
Are you bipolar? dt

If my fibroscan is not so bad, it means the last 13 years i have been doing things OK
In which case i will enjoy a social drink in moderation (after tx finishes)
If my scan shows cirrhosis, then I would most likely never really drink again

I've always lived my life my way and happy to say that i have
I take all advice on board and make my own decision and have always worn any consequences
Everyone has a different experience to hep c and life in general
So no, I'm not bipolar, but given my upbringing I may well be insane

Anyway, as i say, thanks for any advice and concern - it is appreciated
I love this forum and love this initiative - I like a debate/ discussion with different ideas
But probably mot much else to say that hasn't already been said really
Except that my meds arrived yesterday :woohoo:


52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
Last Edit: 6 years 9 months ago by Bloot.

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6 years 9 months ago #2384

chrisp wrote:

I feel obliged to step in and say something here in relation to Bloats experience as I have understood it.
I trust it will be taken in good faith.

In my 30 years of Hep C experience there has been 2 quite distinct MORAL messages ( as opposed to scientific or rather based solidly on empirical data) that I have repeatedly received from medical professionals as well as others.
I personally have never found them helpful.

They are as follows:
1. You must never drink ever, it is bad (evil) and bad things will happen to you.
2. The method by which you contracted the disease was a bad thing to do (evil) and in some way you deserve all you get.

After all of these years; numerous medical professionals, failed interferon treatment, sentenced to death at 30 if I continue to drink (now 55) various symptoms etc..... I feel I have never benefited from receiving these messages. No matter how well the intention.

I actually think moralizing health issues is dangerous in and off itself.
This is a health issue not a moral one. (my belief)
Any research I have ever read suggests that statistically your odds of recovery are significantly improved as a correlation to reduction in alcohol consumption. However this does vary a lot from individual to individual.
Given this it is probably a good idea to reduce alcohol consumption quantities however don't stop enjoying life (this one is not a dress rehearsal).
And had there been clean injecting equipment available when I was experimenting in my curious youth I probably would have never contracted the disease in the first place. It would be a damn good idea to ensure clean injecting equipment is made available to the next generation of curious youth.

Ok Got that of my chest, now I might have a glass of white because I enjoy it.

Agree with you crisp. Its the whole rationale of the model of harm minimisation...moralising is not going to be helpful, and people have to make their own decisions after being informed.

FYI clean injecting equipment has been available in Aust since the 80s and the first HIV scare - being pre-Hep C it was only brought in by a very forward-looking Govt (if you think that the US has still not followed suit, almost 30 years later) in response to HIV/AIDS.


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 9 months ago #2385

Bloot
I'll be enjoying a few glasses of red wine myself when I get free of this virus. You bet.

Chrisp
There have been studies done to find the effects of alcohol on HCV progression. So while you may be right that for some the not drinking message is a moral one, there is also scientific data on it.
For example:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2842525/

"There are numerous clinical studies that suggest a strong epidemiological link between the consumption of alcohol and accelerated liver disease in HCV infected individuals"

" there is clinical evidence to suggest that alcohol metabolism increases HCV replication"

The way it was explained to me is that when I consume alcohol the virus has an orgy and makes much more progeny than usual. Whether it is true or not, I found that image so disturbing that I literally couldn't touch another drop. I have found recently though that people with hepC who have been on the wagon for years have started drinking moderately again because they know they are near the finish line and will be getting rid of the virus soon. Before there was a cure nobody knew how long their livers would have to hold out, and that stopped them drinking. So the whole landscape has changed.

dt

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6 years 9 months ago #2388

Bloot.
The mixture I use ,in favor of alcohol,is to put in a blender,A handful of spinach leaves(for iron),a handful of kale leaves,paw paw,banana,water melon and pineapple,with a couple of tablespoons of yogurt and water and mix it all up.That gives me about 5 glasses a day.I put in the pineapple because my partner does not like it,and it stops her stealing my mix.Probably a good idea not to drink it just before bedtime,it is high in fructose..But with this mix you are getting just about every vitamin and mineral you are ever going to run short of,and you''ll really fire up on the track.


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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6 years 9 months ago #2389

Hey guys you should remember that drinkers without Hep c get cirrhosis. Alcohol on its own is damaging to the liver. With Hep C,it is not the virus that destroys the liver, its our own immune system. the real problems is that the liver doesn't repair quickly enough while our immune system is killing off our liver cells. Death of cells is greater than rejuvenation of cells. why add another substance- alcohol- burdening this rejuvenation process. I don't have a problem with not drinking. I am bewildered when people say gleefully that I will be able to drink again, as if not drinking is the biggest loss one can have in their lifetime. Give me a break. kindly

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6 years 9 months ago #2391

Hi Miko,

Just a thought, all those vegies & fruit sounds very healthy & a good idea, but for those who have the virus, it's a good idea to stay clear of Iron, this is bad, the hep loves it.

So maybe go easy on the kale.

The rest sounds GOOD :cheer:
x


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
Last Edit: 6 years 9 months ago by CJ.

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6 years 9 months ago #2392

Hello Bloot
good to hear you have received your meds. As far as drinking alcohol goes before or after treatment ..you will sort it out. You have enough info on this forum to make an informed decision, which is what helps us all.

It has been a very good conversation from all. I haven't drank for years & after treatment won't drink. Its something I just don't have in my lifestyle these days but have no problem with anyone who does with or without Hep C. Its your life.

Good luck with your treatment


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 9 months ago #2396

CJ wrote:

Hi Miko,

Just a thought, all those vegies & fruit sounds very healthy & a good idea, but for those who have the virus, it's a good idea to stay clear of Iron, this is bad, the hep loves it.

So maybe go easy on the kale.

The rest sounds GOOD :cheer:
x

Hmmm...on the iron, what if you're already deficient? I'm vegetarian and taking vit B12 & iron tablets

And eating spinach lol


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 9 months ago #2398

C j wrote
it's a good idea to stay clear of Iron, this is bad, the hep loves it.
So maybe go easy on the kale.


CJ can you point me to any info on the" avoid iron bit"?.I was always under the impression iron was essential to the creation of red blood cells that the Riba is simultaneously knocking out.


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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6 years 9 months ago #2402

I've always been careful with iron when I had the virus, I was led to believe that a hep liver accumulates iron more & it can make liver worse.
Probably mainly if you take iron sups, and if the liver is cirrhotic.

Also Vit C helps absorb iron so if having foods rich in iron best not to have vitC rich foods with it.
Wait a while then have them.

Also many hep people need to take VitD3 as we are low in that.

Have you been told your low in iron?
best for people to get tested for iron & vitD.

I just know over the years, I've always been warned on various forums to avoid iron.
Also to try to keep to a low GI diet as people with the virus are more susceptible to diabetes.

Hope this helps, didn't mean to worry anyone.
x


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!

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