Aa
Tx round 3 an Update
For those who don’t know, I am a G3 two time non responder.
Yet to experience the joy of Relapse, never quite managed to get to Undetectable.
So much for being an easy to treat genotype.
Just before Christmas I had a Gastroscopy and Endoscopy done.
Waste of time and money really No H.Pylori or anything else much wrong.
Basically if I wasn’t sick I'd be healthy.
Now you would think turning up on time and at the right hospital would be fairly straight forward.
Well not for me it wasn’t, I turned up at the wrong Hospital didn’t I.
Now I was supposed to be at the Hospital at 6:40. I was even half an hour early.
When I arrived the Hospital section I was supposed to go to was basically empty.
OK I am early I thought. So I waited around till about 7:00 and still nothing no one about.
Then a Nurse wandered thru and asked what I was doing. So I told her.
She said we don’t do those on Mondays we are closed. Sh!t I thought, what now.
She knew who my Dr was and rang thru to another Hospital and sure enough he was there.
So I was sent to the wrong Hospital. Hey it wasn’t my fault I was given the wrong forms.
It could only happen to me. Pretty funny really in hindsight.
Now before I was top and tailed, hopefully with different scopes, and properly sterilized ones at that. I gave my Mr Dr a letter on how I wanted to treat, 13 pages detailing exactly how I wanted to treat and why.
I was going to post this letter but it was 13 pages so I didn’t.
However Gauf has posted much of it in his journal.
Below is the Tx plan I asked my Dr for.
• PegIntron 120mg twice a week for 4 weeks, followed by PegIntron 120mg weekly.
Taper down for 1-2 months at EOT.
• Ribavirin 1200mg daily (weight based).
Predose for 2 - 4 weeks.
• Alinia - Nitazoxanide 500mg BID.
Predose for 4 weeks. Ideally Alinia should be taken up to complete Tx end.
With 48 weeks this would require 51 weeks worth of Alinia.
• SAMe 1600mg BID and TMG 5 grams BID
• Insulin Sensitizer such as Metformin.
PCR tests will be done at
PreDose Baseline
2 weeks
4 weeks
Now curiosity may get the better of me here as I wouldn’t mind knowing what my VL is before my first IFN shot and at the end of week one. But I’ll have to pay for those. Still might get these PCR tests though.
I saw My Dr again in early January and much to my surprise he agreed to everything I wanted to do.
He even agreed to me taking Metformin. I went to a lot of trouble justifying Metformin only to discover I didn’t need it. I had managed to get my HOMA-IR score down to 1.2 with some of HR’s supplements.
Well something I did worked, I was also loosely following the South Beach Diet for a couple of months.
Although my glucose is still a little higher than I would like at 5.6 mmol (101mg/dl), but I am really happy with my insulin which is 5 mU/L (5 uU/dl).
Alinia in Australia is an Orphan drug. What this means is you can get it but Dr’s cant prescribe it without getting approval from the TGA (Aust version of the FDA more or less).
So my Dr agreed to do this and sent the details off to the TGA.
Well Shite, they actually approved it, I half expected them not to, seeing as I appear to be the first person in Aust to take Alinia for HepC.
Now while My Dr agreed to me tapering IFN he had concerns about sterility.
Well I hadn’t thought of that had I. So I looked into it.
Now tapering with Pegasys is dead easy.
You just get another needle and syringe and withdraw half of what in the syringe each time. How hard is that.
Well with Pegintron d@mn near impossible. You see when pegintron is mixed it only lasts 24 hours when stored in the fridge. Using it after 24 hours risks bacterial infection.
So unless I am prepared to waste a truck load of IFN then Tapering with PegIntron is not an option.
Pity really because I quite like the idea. But I just cant bring myself to throwing out Interferon.
During my latest visit Monday 9th, we discussed modifying the IFN Dosing.
Instead of taking Peg-Intron twice a week I am going to
DoubleDose the first shot, Although I didn’t tell him this bit.
Then have another shot 3 days later.
Then move the shots out to every 4 days for two weeks
Then every 5 days for two more weeks
Then every 6 days
Finally get back to weekly dosing at week 8
So I intend to have my first shot on Tuesday March 3rd which will mean the weekly shots will end up being on a Friday from week 8.
We then faxed off the approval letter to the Company that supplies Alinia and ticked the box to deliver to Patient.
Also got a script for Peg-Intron.
Now he asked for 168 Rebetol pills but for some reason I ended up with 140 pills. Not sure why. Doesn’t matter much as 1000 is what I should be taking but I want the extra Pill.
So gave me a bottle of Copegus.
Now I didn’t care that he gave me Copegus and I was going to be taking Rebetol, H3ll they the same drug. But I have been advised that I shouldn’t mix Copegus with Rebetol.
From the RebetolPI
The safety and efficacy of REBETOL Capsules with interferons other than INTRON A or
PEG-INTRON products have not been established.
So maybe I shouldn’t mix them.
As Copegus are pink pills and Rebetol has blue stripes on the capsule then I kinda saw them as boy/girl pills.
I was hoping that if you mixed them together that they will bread.
Instead it looks like they might fight. Bugg3r. Not much in the way of studies to go on.
Just as well I am Double Dosing and actually have an extra box of Rebetol because of that.
As of today I have 6 bottles of Alinia and a Pegatron Pack, and will order another next week.
I will start predosing Riba and Alinia on Tuesday.
First IFN shot will be on March 3rd
So Round 3 is about to begin. See if I can go from NR to RVR.
Now for why I want to treat this way.
DoubleDose Peg-Intron
My reason for high dosing Peg is based on Viral Kinetic studies which show that the first phase decline is dose dependant.
Ribavirin
I Intend on taking 200mg above my normal weight based dosing for as long as my reds hold up.
The extra RBV should help with the viral kinetics.
Alinia
Alinia is the only drug other than Interferon that has cured HCV on its own.
OK you need LVL and the rates aren’t that high but neither was IFN monotherapy rates.
While the mechanism of action of Alinia is largely unknown, what is known is that it activates PKR (Protein Kinase R) and also interferes with protein folding.
It is also a powerful anti bacterial amongst others things.
Seem to kill almost everything, eg H. Pylori, Giardia, Cryptosporidium etc.
But best of all if it doesn’t work then Alinia doesn’t make me even more resistant, unlike the PIs
SAMe & TMG
Now this may surprise many but Alinia is not the key to this SAMe is.
Here is why, just don’t ask me to explain it.
The Addition of SAMe prevents STAT1 from hypomethylating which prevents it from binding to PIAS1.
This improves Interferon Signaling.
Viperin another ISG (IFN Signaling Gene) also requires SAMe as it is a SAMe radical.
Viperin has shown anti viral activity against HCV.
Continued
Yet to experience the joy of Relapse, never quite managed to get to Undetectable.
So much for being an easy to treat genotype.
Just before Christmas I had a Gastroscopy and Endoscopy done.
Waste of time and money really No H.Pylori or anything else much wrong.
Basically if I wasn’t sick I'd be healthy.
Now you would think turning up on time and at the right hospital would be fairly straight forward.
Well not for me it wasn’t, I turned up at the wrong Hospital didn’t I.
Now I was supposed to be at the Hospital at 6:40. I was even half an hour early.
When I arrived the Hospital section I was supposed to go to was basically empty.
OK I am early I thought. So I waited around till about 7:00 and still nothing no one about.
Then a Nurse wandered thru and asked what I was doing. So I told her.
She said we don’t do those on Mondays we are closed. Sh!t I thought, what now.
She knew who my Dr was and rang thru to another Hospital and sure enough he was there.
So I was sent to the wrong Hospital. Hey it wasn’t my fault I was given the wrong forms.
It could only happen to me. Pretty funny really in hindsight.
Now before I was top and tailed, hopefully with different scopes, and properly sterilized ones at that. I gave my Mr Dr a letter on how I wanted to treat, 13 pages detailing exactly how I wanted to treat and why.
I was going to post this letter but it was 13 pages so I didn’t.
However Gauf has posted much of it in his journal.
Below is the Tx plan I asked my Dr for.
• PegIntron 120mg twice a week for 4 weeks, followed by PegIntron 120mg weekly.
Taper down for 1-2 months at EOT.
• Ribavirin 1200mg daily (weight based).
Predose for 2 - 4 weeks.
• Alinia - Nitazoxanide 500mg BID.
Predose for 4 weeks. Ideally Alinia should be taken up to complete Tx end.
With 48 weeks this would require 51 weeks worth of Alinia.
• SAMe 1600mg BID and TMG 5 grams BID
• Insulin Sensitizer such as Metformin.
PCR tests will be done at
PreDose Baseline
2 weeks
4 weeks
Now curiosity may get the better of me here as I wouldn’t mind knowing what my VL is before my first IFN shot and at the end of week one. But I’ll have to pay for those. Still might get these PCR tests though.
I saw My Dr again in early January and much to my surprise he agreed to everything I wanted to do.
He even agreed to me taking Metformin. I went to a lot of trouble justifying Metformin only to discover I didn’t need it. I had managed to get my HOMA-IR score down to 1.2 with some of HR’s supplements.
Well something I did worked, I was also loosely following the South Beach Diet for a couple of months.
Although my glucose is still a little higher than I would like at 5.6 mmol (101mg/dl), but I am really happy with my insulin which is 5 mU/L (5 uU/dl).
Alinia in Australia is an Orphan drug. What this means is you can get it but Dr’s cant prescribe it without getting approval from the TGA (Aust version of the FDA more or less).
So my Dr agreed to do this and sent the details off to the TGA.
Well Shite, they actually approved it, I half expected them not to, seeing as I appear to be the first person in Aust to take Alinia for HepC.
Now while My Dr agreed to me tapering IFN he had concerns about sterility.
Well I hadn’t thought of that had I. So I looked into it.
Now tapering with Pegasys is dead easy.
You just get another needle and syringe and withdraw half of what in the syringe each time. How hard is that.
Well with Pegintron d@mn near impossible. You see when pegintron is mixed it only lasts 24 hours when stored in the fridge. Using it after 24 hours risks bacterial infection.
So unless I am prepared to waste a truck load of IFN then Tapering with PegIntron is not an option.
Pity really because I quite like the idea. But I just cant bring myself to throwing out Interferon.
During my latest visit Monday 9th, we discussed modifying the IFN Dosing.
Instead of taking Peg-Intron twice a week I am going to
DoubleDose the first shot, Although I didn’t tell him this bit.
Then have another shot 3 days later.
Then move the shots out to every 4 days for two weeks
Then every 5 days for two more weeks
Then every 6 days
Finally get back to weekly dosing at week 8
So I intend to have my first shot on Tuesday March 3rd which will mean the weekly shots will end up being on a Friday from week 8.
We then faxed off the approval letter to the Company that supplies Alinia and ticked the box to deliver to Patient.
Also got a script for Peg-Intron.
Now he asked for 168 Rebetol pills but for some reason I ended up with 140 pills. Not sure why. Doesn’t matter much as 1000 is what I should be taking but I want the extra Pill.
So gave me a bottle of Copegus.
Now I didn’t care that he gave me Copegus and I was going to be taking Rebetol, H3ll they the same drug. But I have been advised that I shouldn’t mix Copegus with Rebetol.
From the RebetolPI
The safety and efficacy of REBETOL Capsules with interferons other than INTRON A or
PEG-INTRON products have not been established.
So maybe I shouldn’t mix them.
As Copegus are pink pills and Rebetol has blue stripes on the capsule then I kinda saw them as boy/girl pills.
I was hoping that if you mixed them together that they will bread.
Instead it looks like they might fight. Bugg3r. Not much in the way of studies to go on.
Just as well I am Double Dosing and actually have an extra box of Rebetol because of that.
As of today I have 6 bottles of Alinia and a Pegatron Pack, and will order another next week.
I will start predosing Riba and Alinia on Tuesday.
First IFN shot will be on March 3rd
So Round 3 is about to begin. See if I can go from NR to RVR.
Now for why I want to treat this way.
DoubleDose Peg-Intron
My reason for high dosing Peg is based on Viral Kinetic studies which show that the first phase decline is dose dependant.
Ribavirin
I Intend on taking 200mg above my normal weight based dosing for as long as my reds hold up.
The extra RBV should help with the viral kinetics.
Alinia
Alinia is the only drug other than Interferon that has cured HCV on its own.
OK you need LVL and the rates aren’t that high but neither was IFN monotherapy rates.
While the mechanism of action of Alinia is largely unknown, what is known is that it activates PKR (Protein Kinase R) and also interferes with protein folding.
It is also a powerful anti bacterial amongst others things.
Seem to kill almost everything, eg H. Pylori, Giardia, Cryptosporidium etc.
But best of all if it doesn’t work then Alinia doesn’t make me even more resistant, unlike the PIs
SAMe & TMG
Now this may surprise many but Alinia is not the key to this SAMe is.
Here is why, just don’t ask me to explain it.
The Addition of SAMe prevents STAT1 from hypomethylating which prevents it from binding to PIAS1.
This improves Interferon Signaling.
Viperin another ISG (IFN Signaling Gene) also requires SAMe as it is a SAMe radical.
Viperin has shown anti viral activity against HCV.
Continued
If you start talking about having bright yellow children, I'll worry.
And I won't like it! LOL
Co
And I won't like it! LOL
Co
It a UK Punk band call CockSparrer.
Cause when I joined I was on Tx and I misspelt it.
But thats OK it was their original spelling anyway
CS
Cause when I joined I was on Tx and I misspelt it.
But thats OK it was their original spelling anyway
CS
What is the significance to this name?
Anyway, thanks for all the information, as soon as I'm out of denial I'm sure I'll be using it.
Thank you so much for your great effort.
M
Anyway, thanks for all the information, as soon as I'm out of denial I'm sure I'll be using it.
Thank you so much for your great effort.
M
Awe-inspiring plan -- wishing you the best of luck -- they say third time's a charm!
I sincerely hope the added Alinia does the trick for you. My husband, a tx naive, Stage 4, with Alinia added to SOC is Und <5 after shot #13 -- I hope you do as well or better!
~eureka
PS - Hubby takes Alinia w/Riba 8:30am & 8:30pm w/high fat food.
I sincerely hope the added Alinia does the trick for you. My husband, a tx naive, Stage 4, with Alinia added to SOC is Und <5 after shot #13 -- I hope you do as well or better!
~eureka
PS - Hubby takes Alinia w/Riba 8:30am & 8:30pm w/high fat food.
How do you take Riba and Alinia
Do you split them up or take them at the same time
---------------------------------------------------------------------------------
6:30am riba and then 9:30am Alinia
Then in the afternoon I take riba again (though my hep doc says I can take them all at once in the morning - after I had pre-dosed for a while)
Then the Alinia at 9:30 pm which is a pain because I don't feel like eating again and usually just stick a piece of cheese in my mouth - though we are supposed to have a meal with Alinia to get it to totally absorb. I told you I stopped for a week,my stomach was bothering me, yeah I told you, so I'm back taking it again. I feel like I am on it since birth. Over a year already. I'm glad I am passed child bearing age. I would probably give birth to a Teenage Mutant Ninja Turtle with all these meds I am mixing. But I would love my baby Ninja. I'll name him Alinia and you can be the Godfather. Don't stare at him! Its my fault he is a Mutant Ninja. The price we pay in trying to rid the virus. My poor child. I think I will home school him.
MO - see ya later, gotta run.
Do you split them up or take them at the same time
---------------------------------------------------------------------------------
6:30am riba and then 9:30am Alinia
Then in the afternoon I take riba again (though my hep doc says I can take them all at once in the morning - after I had pre-dosed for a while)
Then the Alinia at 9:30 pm which is a pain because I don't feel like eating again and usually just stick a piece of cheese in my mouth - though we are supposed to have a meal with Alinia to get it to totally absorb. I told you I stopped for a week,my stomach was bothering me, yeah I told you, so I'm back taking it again. I feel like I am on it since birth. Over a year already. I'm glad I am passed child bearing age. I would probably give birth to a Teenage Mutant Ninja Turtle with all these meds I am mixing. But I would love my baby Ninja. I'll name him Alinia and you can be the Godfather. Don't stare at him! Its my fault he is a Mutant Ninja. The price we pay in trying to rid the virus. My poor child. I think I will home school him.
MO - see ya later, gotta run.
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