emo Supplements with evidence

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6 years 7 months ago #7011

Hi All,

I think there are a couple of points here:

1.) Most of the data currently available is for old Interferon treatments which is understandable due to short period that DAAs have been in use. But what we do know from that old data is that people with hep c tend to be deficient in B12 and D vitamins, even more so in those in the over 50s age group when our bodies become less efficient at extracting/manufacturing them from our normal diet. But we also need to remember that interferon is not some drug from outer space that our bodies have never seen before. We naturally produce our own similar interferon chemicals to boost our immune systems, see link.

en.m.wikipedia.org/wiki/Interferon

What we refer to as interferon treatment is the addition of extra artificial interferon to try and compensate for/trigger extra immune response to fight the virus. So boosting B12 and D should still assist our natural interferon to fight the virus. The ALA, Betaine, SAMe, etc and the rest of B group complex are part of the process of converting/using B12. So ensuring that we have sufficient of each of these should assist our bodies in absorbing enough B12 to support both the fight and healing process. In other words, while the DAAs kill the virus, our bodies need to efficiently dispose of those dead virus and then heal the damage they caused.

2.) RVR is at the start of treatment and SVR is the hoped for result after treatment. You could also include another Viral Response group in there and maybe call it MVR (Maintained Viral Response or continuing UNDetected readings after RVR and before SVR) So the whole process of treatment and then waiting for confirmation at SVR12/24 needs to be supported by maintaining good B12 and vit D levels throughout the whole period.

In other words maintaining B12 and D levels, and the other things that support that process, at upper normal range throughout treatment should be beneficial when using DAAs just by not starving our bodies of the required nutrients even though it hasn't been proved in trial yet.

The above is my understanding in simplified terms as best I can describe so if any scientists/medicos out there spot any basic errors please feel free to correct my admittedly laymans understanding.


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:
Last Edit: 6 years 7 months ago by Gaj.
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6 years 7 months ago #7012

Evidence is a bit confusing at this time (preliminary evidence showing amazing promise and the one controlled study failing to replicate it, but more research being needed to confirm) betaine may have a role in treating fatty liver and actually improving the fibrotic state of the liver when taken at very high (20g) dosages daily.
Just because a study shows something works you need to look at the others that say it's crap. A study done in a petri dish or animals doesn't mean it will work in humans.
But, with that said due to S-Adenosylmethionine methyl donor properties, SAMe may have a role as adjunct therapy for Hepatitis C.
www.ncbi.nlm.nih.gov/pubmed/16557551
www.ncbi.nlm.nih.gov/pubmed/14699505
www.ncbi.nlm.nih.gov/pubmed/16306605
www.ncbi.nlm.nih.gov/pubmed/21079746
www.ncbi.nlm.nih.gov/pubmed/20854821
Just want to show for example this result: S-Adenosylmethionine , in conjunction with standard therapy and at 1200mg daily, is able to increase the amount of subjects achieving an SVR in reponse to hepatitis treatment.
BUT, with that said the study was "Uncontrolled or observational only".
I could go on and on. NOBODY should be taking supplements on treatment. Maybe a multi-vitamin mineral supplement with 100% of the RDA but always check with your doctor.
Most can and should take vitamin D3 even on treatment. B12 should be safe. You can get injectable B12


Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.

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6 years 7 months ago #7013

Tommy wrote:

NOBODY should be taking supplements on treatment.

Hi Tommy,

I have to disagree with this statement although I think it is probably more about semantics than anything.

What I would say is:

"People should be seeing their doctors to run diagnostics on their vitamin levels and then sensibly supplementing to get their levels in the upper optimum range during and post treatment at least up to SVR"

The problem with "a good multivitamin with 100% of the RDA" as pointed out previously, is that your body needs to be capable of absorbing that, shouldn't be a problem for healthy people but we don't necessarily fit that profile. My point about diagnostics is that then we will know if we are seriously deficient and can then have B12 shots or whatever to bring back into range. After that we can look at whether we need average 100% RDA or something different.

Where I do agree with what I think you are trying to say is that we shouldn't be thinking 100% RDA is good so 1000% MUST be ten times better.

As for Betaine, SAMe and ALA, etc. as previously noted, they can help with B group conversion/assimilation in those with compromised absorption but you don't need them all and trace quantities are probably fine rather that massive doses. Moderation being the key word here until more extensive studies provide confirmative data. (And I think I would give ALA a miss based on info in below link.)

hcvadvocate.org/library/herb_glossary.asp

But that is a potential drug interaction issue.


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:
Last Edit: 6 years 7 months ago by Gaj.
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6 years 7 months ago #7016

I agree. Many supplement don't even get absorbed like milk thistle. Even the most absorbable kind is minimal. If your decomp cirrhosis or have cirrohis I agree you absorption rate declines. Even getting nutrition from food. Most everyone else should be OK.


Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
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6 years 7 months ago #7017

GAJ wrote:

In other words maintaining B12 and D levels, and the other things that support that process, at upper normal range throughout treatment should be beneficial when using DAAs just by not starving our bodies of the required nutrients even though it hasn't been proved in trial yet.

The above is my understanding in simplified terms as best I can describe so if any scientists/medicos out there spot any basic errors please feel free to correct my admittedly laymans understanding.

Thanks!
:)


HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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6 years 7 months ago #7018

Agree.


Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.

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6 years 7 months ago #7019

Ahh, I agree about things like milk thistle and all the other "supplements" that people have taken pretreatment attempting to protect the liver, reduce ALT/AST, etc, after all the treatment is going to be doing those jobs anyway and those sort of supplements may have undiscovered interactions so why risk them?
I was discussing B group and D vitamins plus similar that are certainly deficient in those with cirrhosis but also most people over 50 and many heppers in general due to low fat/protein/calorie diets often with a strong vegetarian bias. In my case, after close to forty years with hep, a strong desire to be rid of it and a significant investment in generic medications to do that, I feel that a small further investment in finding where I am deficient and targeting those areas is a better solution than just taking some general multivitamins and hoping for the best.


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 7 months ago #7020

Agree. Wonder if most insurance companies would pay for blood work to find out if your deficent in certain vitamins etc. My insurance kicks in Feb 17 so I'll find out.


Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.

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6 years 7 months ago #7022

Good point, I think I would be arguing that it was a small investment on their part to optimise their positive return (cure on first treatment) on the significant investment they are making in the medication.....of course they're insurance companies so logic may not come into it!!! :lol:


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 7 months ago #7029

All very interesting !

Re Alpha Lipoic Acid

Attention for Liver Disease: May interact with drugs metabolized by liver.
Are the DDAs metabolized by liver.? For some reason, I thought it was the kidneys and that's why we need kidney checks?
or am I in a bain-fog moment? ;)

Milk thistle doesn't like me at all! The thing is, we are all unique, so much of Hepatitis C advise is based around fatty liver - I am the opposite way, I have skinny everything, including liver ! I don't absorb fats well, proteins etc and am very under-weight, muscles have also wasted - It's a big fight to keep weight on. I started taking Milk Thistle when first diagnosed and realised after some time and more reading, it is also used as a slimming aid ! At 43 kgs this wasn't the idea at all .
Stopped it a year ago - Funny, my instincts told me it wasn't right for me personally.

(edit) I was taking B12, then stopped, bloods showed I was lacking so have started again - Re VitD - No sun here at all at this time of year, so taking that now, when in a hot, sunny climate I don't bother, I feel much better for sunshine, there's no doubt in my mind about that.

So I think I shall take Dr F's advise and continue with the Vit B12 and VitD.
Not sure what to think re statins and really don't know anything much about them, except there is much debate for and against for dishing them out to all over 50.

We are complex beings !


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.
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6 years 7 months ago #7040

Started B12 today


Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
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6 years 7 months ago #7041

btw Dan & Dabara - Vit B12 can do funny things to your urine and can make it go bright yellow - just warning you in case you don't 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

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6 years 7 months ago #7046

Thanks LG. I've noticed that :-).
First time I though there is something wrong, but read up that it is normal.


Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

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6 years 7 months ago #7062

I'm very wary of statins. Some evidence points to accelerated ageing and other nasty unwanted effects.

articles.mercola.com/sites/articles/arch...-recommendation.aspx


M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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6 years 7 months ago #7073

Hi Sonix,

While there are certainly arguments around advisability of statins as a long term preventative measure for cardiac incidents vs any potential side effects, in this case I believe we are talking about using them short term during treatment and maybe out to SVR for their intended purpose of reducing high cholesterol levels and thus making HCV transport and replication less efficient. Also as Dr James noted, for gt 1 and 2 with low F score, etc there may be little advantage. However, for a gt3 like myself where I have <90% chance of SVR every little leg up helps so I plan to investigate it further


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:
Last Edit: 6 years 7 months ago by Gaj. Reason: Spillin

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