Hep C Discussion Forum

ios9 · Senior Member

RE: Responce to my inquire on any trial issues

garfield · Veteran Member

ios9 wrote:
I'm naughty : to get the results earlier, my personnal doc is asking for a private blood test same time as the hospital one. That way I have results 4 days later instead of waiting

a really good idea for the nerves. Therefore I would prefer to test every week , but additional test I have to pay by myself.

I know nothing will change with a good or bad result, so I save the money.

garfield · Veteran Member

Hi Do,

hope is, that the influence of Ribavarin in the interferon-free abbvie therapie isn't so big.

Currently abbvie is running two blinded studies named Pearl..., GT1a +/-Ribavarin and GT1b +/- Ribavarin.

Perhaps the result will be, GT1a needs Ribavarin and GT1b not.

In two weeks I will have my next date in the study center. If I will not get a call up to 9 days later biggrin

ios9 · Senior Member

I lost about 1.5. I'm probably A/A+A/A too :(

garfield · Veteran Member

ios9 wrote:
I do not understand the table you posted : what does means ITP ?

Inosintriphosphatase

My Hb Reduction was 0.5 , I think that means A/A + A/A

wish nice sunday

ios9 · Senior Member

Hi Garfield,

Oh bad surprise for me too then as I had nearly no anemia (finished with 11.something) while a lady on same trial as me, same hospital, had a severe anemia but was UND weeks before me.

One of my friend who had hepatitis E from a transplant, has been having Riba for two years (nothing else). She became UND fast but has severe anemia and doc reduced Riba from 800 to 600 then to 400. However, even with 400 she is still UND. They will consider her cured if she is still UND after 6 months EOT.

I do not understand the table you posted : what does means ITP ?

Thanks Garfield for the informations !

Would be interesting to know if Matt had anemia or not ? funny enough .. my hépato was pleased to see I was not having anemia !!!

garfield · Veteran Member

Hi Do,

all mandatory tests, drugs, and so on is payed by the German Health Security.

My insurance knows I am attending a study. I am sure it would refuse to pay the bill, and the knowledge relaps? is for me the effort to convince it not worthwile.

-- Edited by garfield on Sunday 18th of August 2013 01:27:45 PM

ios9 · Senior Member

Well, without Riba might be ok for patients whith Geno b1 and a good liver, but for cirrhotic like Matt and me, no idea.

So you'r a1, I am b1, you have a good liver, I have a damaged one as well as a low vit D number (vit D is said to help treatment) let's see what will be the futur..

I'm naughty : to get the results earlier, my personnal doc is asking for a private blood test same time as the hospital one. That way I have results 4 days later instead of waiting 2 weeks.

I'll see my doc next week, so might have results for week 8 Monday 26.

Meanwhile, Keep crossing our fingers :)

Do

-- Edited by ios9 on Sunday 18th of August 2013 12:17:11 PM

-- Edited by ios9 on Sunday 18th of August 2013 12:19:23 PM

ios9 · Senior Member

Yes Garfield thanks. You know I was wondering why, as a vegan, I was not getting anemia while the two others from same hospital who were eating meat daily were having it, also they have been UND before me as I said, I was the last one on5 patients to get UND.

You know, when I get a stressing news like this one, I tell myself that at least my liver had some rest..

Do

-- Edited by ios9 on Sunday 18th of August 2013 10:46:48 AM

garfield · Veteran Member

Hi Do,

did you noted, that I edited my second posting.

It was an unpleasant surprise, when I sended my first posting, without a warning the program cut a part of my text.

-- Edited by garfield on Sunday 18th of August 2013 10:41:38 AM

garfield · Veteran Member

sorry, my first posting I sended was too long, now the second part:

When you have the genom combination C/C and A/A you will get a massive anemia, with the combination A/A and A/A nothing will happen.

one of different studies: http://www.gastrojournal.org/article/S0016-5085(10)00875-9/fulltext

They didn't find an influence for SVR. But the leading doctor of my study center has other experience.

Anyway the influence of the genoms for SVR is extrem.

http://www.natap.org/2013/HCV/073113_05.htm

In Spain researcher studied the influence of IL28B / TGF-beta / AQP-2 and their combinations for SVR in a therapy with Interferon/Ribavarin

for HCV/HIV infected persons. With favourable combination they reached SVR in 80%, only 7% with unfavourable combination.

-- Edited by garfield on Sunday 18th of August 2013 10:14:57 AM

-- Edited by garfield on Sunday 18th of August 2013 10:15:44 AM

garfield · Veteran Member

ios9 wrote:
Garfield, like Malcom I Wonder what means "unpleasant gene surprise" ?

Hi Do, hi Matt and all,

it gives at the moment two still independent branches which analyze the influence of Ribavarin.

1. The medical research: they detected, that the Ribavarin level in blood is associated with SVR, often they associated it with

the reduction of Hb-level. The influence of the genoms, so far as I know, was never an issue in this studies.

Surprisingly it doesn't matter, if it is necessary to reduce Ribavarin based on the Hb-level. In germany Erythropoetin is not allowed in hcv therapy.

Also in abbvie studies all who had to reduce Ribavarin received SVR.

2. The genetical research: they detected genoms, which have an influence of Ribavarin induced anemia

Definition of an ITPase Deficiency Variable According to rs1127354/rs7270101 Genotypes

Table 1. ITPase Deficiency Variable

rs1127354	rs7270101	Predicted ITPase activity	Predicted ITPase deficiency
Wild-type (C/C)	Wild-type (A/A)	100%
Wild-type (C/C)	Heterozygosity (A/C)	60%	+
Heterozygosity (C/A)	Wild-type (A/A)	30%	++
Wild-type (C/C)	Homozygosity (C/C)	30%	++
Heterozygosity (C/A)	Heterozygosity (A/C)	10%	+++
Homozygosity (A/A)	Wild-type (A/A)	<5%	+++

-- Edited by garfield on Sunday 18th of August 2013 09:57:44 AM

ios9 · Senior Member

mallani wrote:
Hi Do,
Just a quick one. Remember to look at the units for Vit D measurements. In Australia we use nmol/litre. In the USA, they seem to report in ngm/ml. I'm not sure what units are used in Europe. From memory, the figure in nmol/l is about twice the amount in ngm/ml.

Hi Malcom,

We use ngm/ml and the "normal" level is up to day 30, however 80% of French people are below.

Do

mallani · Guru

Hi Do,

Just a quick one. Remember to look at the units for Vit D measurements. In Australia we use nmol/litre. In the USA, they seem to report in ngm/ml. I'm not sure what units are used in Europe. From memory, the figure in nmol/l is about twice the amount in ngm/ml.

Yes, I've been to Africa, and worked in Kenya. As I said, please take what supplements you like and believe any reports you like. I just remain very skeptical. Cheers.

Matt Chris · Guru

Hey Garfield

Congrats on your 4 week results, it's a very important step especially without having interferon.

Garfield what did you mean by an unpleasant gene surprise ?

Matt

ios9 · Senior Member

Hi Garfield, Matt, Malcom, All,

Garfield, like Malcom I Wonder what means "unpleasant gene surprise" ? you seem to be worried, yes ?

I had an unpleasant surprise too at week 4 : my vitamin D level has drop from 21 before treatment to 8 after treatment, and my right thumb became sudenly painful with small bump over the joint. Nobody had arthrose in my family before. We know HCV loves to live in our articulations, but it has been gone for more than 10 weeks by now, so my doc said it can't be the virus.

In France however, average vit D level is around 25/30 in the grown-up population. Malcom wrote it's 80 in Australia (they drink lot of milk and have sun nearly all year), what about Germany ?

Matt, do you know the vit D average level in the States ?

Malcom : About spiruline : have you been in Africa ? the populations near warm lacs are healthy, eating fresh spiruline every day (from the lacs). I have been there many times because my husband was working in Africa. We have still a lot to learn from other cultures. One of my friend has been teaching African populations from other parts how to grow spiruline for years so those poor populations can feed themselves and become more autonom.

Starving babies are saved by using spiruline in Madagascar Health Center (French and native doctors). There is many documentaries on this Medical Center.

Now : I am speaking of high dose of Spiruline, not what is given by commercial labs, bio or not. They sell as little spiruline they may to reduce their cost, and sell it for a hight price, as always.

About Milk thistle : at a HVC conference in Paris, Prof Stanislas Pol said Milk thistle is the only natural CV killer, but it has to be given in very high quantity by injection in the blood, each day and for a long time. Autrichian scientists are working on the subject.

I beleive VL can be controled by having some as a diet complement, even if it can't cure CV that way (through our stomac).

About Desmodium : like I wrote before, and in accordance with Terry, we have a lot to learn from other cultures. And it's not because we can't totally understand how it works that it does not work.

Also of course Labs do not want us to get help from no expensive no chemical stuff. They can always give us wrong results from their own "studies", look to what has happen recently in Japan.

-- Edited by ios9 on Friday 16th of August 2013 10:10:49 AM

garfield · Veteran Member

ios9 wrote:
Hi Garfield,
So, you'r undetectable EOT week 4 ? for what I have heard, it's an important week, CONGRATULATIONS !
Does your doc think the opposite ? hope not !

Hi Do,

if we know, there are some reasons, which are positiv/negativ for SVR.

After unblinding I/my doc had to note an unpleasant gene surprise. So SVR4 is a milestone for me.

So let us keep our fingers crossed.

garfield · Veteran Member

mallani wrote:
Hi guys,
Most relapses occur at between 3 and 8 weeks post Rx. This is why the 4 week VL test is not done, except in Trials.

Hi guys,

in fact SVR4 is only a small step but it has raised my hopes. 65% of people with a relaps had a dedectable VL by week 4

from http://hepatitiscresearchandnewsupdates.blogspot.de/2013/06/is-svr12-as-good-as-svr24.html#.Ug1Q6JJeRUq

and in the interferon-free therapy with sofosbuvir only 2% got a relaps after SVR4

from http://www.natap.org/2013/EASL/EASL_93.htm

Terry · Senior Member

Mallani I almost forgot the Phytoberry that I also take is a natural food supplement/anti oxidant that contains no artificial ingredients. And if you google Milk thistle it has been used for 200 years and while it has not been totally proven it is mentioned by places like the Mayo clinic and other various sources. The others were just herbs that the Chinese have been using for years. When you think about it nobody every thought that taking a bunch of needles and sticking then in your back would work and you won't get any doctor to agree that it is effective thousands have been relieved of pain because of this therapy. I think I mentioned in a prior post that the head hep guy had told me that Teleprevir was the drug for me and he looked disappointed when I mentioned the Abbvie trial Drugs. ? I still believe that there are great perks for these guys to push you towards certain drugs so I find it funny that they are very quick to discredit anything that doesn't make some a lot of money. My approach is to question everything and if it is just an herb that is involved then I take a second glance. To each his own right

Terry · Senior Member

No My reference to those was because I have taken milk thistle for years and believe that the reason my viral load was lower then most cirrhotics is because of that. Now the selenium and a few of the other products I was taking are already manufactured by our bodies and I was merely boasting the amount that my body was not making due to my condition. As far as the trial I signed and agreed to not take the milk thistle during the treatment and have not done so but will go back to my milk thistle tea after treatment because I have read numerous articles noting that it improves the cirrhotic liver. The rest I wont require if this treatment works but if I should relapse I still stand by not allowing them to put that interferon in my system. If the Sofosbuvir is available by then great just wont use the interferon. Now if you reversed the first part and called it killer weed then yes being from British Columbia the Pot capital of the world I do participate in that as do just about every MS and Cancer Patient because it relieves a lot of symptoms and aids in increasing your appetite..lol

mallani · Guru

Hi guys,

Most relapses occur at between 3 and 8 weeks post Rx. This is why the 4 week VL test is not done, except in Trials.

I'm biased, being a traditional medico, but I'm really amazed by your faith in a weed-killer (desmodium), milk thistle, spirulina and Lloyd Wright's junk. Of course you are free to disagree and take what you like, but those in Trials should be careful as most Trial Co-ordinators forbid such stuff. I would apologise if you could give me a reference from a reputable source about the long-term benefits from this stuff. It must cost a fortune! Cheers.

garfield · Veteran Member

Hi Do,

I want to mention, that the virus load can extremly change without any reason.

Up to EOT I took only the same vitamins every day, but the measure of my virus load was:

February 2012 10.2 Mill, 2 weeks later 12.2 Mill, in August 2012 6.5 Mill, in March 2013 10.5 Mill.

Now I am taking silymarin and spirulina with the little hope to prevent a relaps.

I received SVR4, but this is not yet a really importent statement.

ios9 · Senior Member

Hi Garfield,

So, you'r undetectable EOT week 4 ? for what I have heard, it's an important week, CONGRATULATIONS !

Does your doc think the opposite ? hope not !

Let's hope for the best :)

Do

-- Edited by ios9 on Thursday 15th of August 2013 05:06:10 PM

ios9 · Senior Member

Hi Terry,

My clinic has received same analysis from AbbVie too.

As they had said in Amsterdam last April they would consider 80% UND for the Turquoise Trial to be a success, their new analysis could mean they have got it with the 12 weeks Turquoise ( cirrhotic patients).

About "other medecines" there is Desmodium adscenders. There is scientific evidences that it allows transaminases to get down to normal. A study had been made in Canada so you migh have information about Desmodium like I do.

My homeopath doc did put me on a month before my treatment and my VL got down from 21M to 17 M, and my transaminase got better, but I was also having accupunctur treatment at the same time, as well as pineaple dry seeds extract, so I can't say which did what.

Do

Terry · Senior Member

" There was an interim analysis done by Abbott that looked at all patients in this study across the globe. The conclusion was that most patients were responding very well and there were no changes to be made to the overall regimen and design of the study.

Very unfortunate for your friend, but it's too early to say if there is any problems with regards to resistance and mutations. To give you an idea, none of the patients at our clinic are experiencing any virological failure... we aleady have a few that are beyond 8 weeks post treatment "

Now at my appointment for blood work next Friday I will be asking for their idea for a rescue plan. I believe they told me it would be some what the same with the addition of interferon and you know I resisted that crap before so already looking in to options. Prior to treatment I was taking some products that I got from alternative medicines a guy called LLoyd Wright that claims to have cured himself with Herbs and I was also making up a metal tea bag containing half Milkthistle seads and the other half red clover and lemon grass. And if you are correct and the virus must be left for a while then I plan on going back to that to slow the virus down. Now I mentioned the black cherries before so I will add another product I am trying and get your response to it. Google Phytoberry and see what you think.

If you guys have any other things you have tried please let me know because I won't stop looking until I find the answer so please feel free to advise me. Thx Again Terry

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Definition of an ITPase Deficiency Variable According to rs1127354/rs7270101 Genotypes

Table 1. ITPase Deficiency Variable

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