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
MyOwn when I said "remembering those posts brings a smile to my face" I was thinking of certain posts (I'm sure you remember those :) ) not your relaspe posts.
------------------------------------------------------------------------------
I know what you meant ;o) The back and forth "debates" and things like that. And my sarcastic humor at times that would be misunderstood and cause a war;o) And someone elses sarcastic humor that I would misunderstand and cause ANOTHER war!;o)
But at the end of the day or sometimes it took 2 or 3 days ;o) everyone was Okay- back in the "old days," or as CS would say the "Terracotta Days."
And yes, I know what you mean about relapse after having all the positive indicators - el stinky - beyond a disappointment for sure.
But anyhow, great to see you!! Talk to ya again!
MO
------------------------------------------------------------------------------
I know what you meant ;o) The back and forth "debates" and things like that. And my sarcastic humor at times that would be misunderstood and cause a war;o) And someone elses sarcastic humor that I would misunderstand and cause ANOTHER war!;o)
But at the end of the day or sometimes it took 2 or 3 days ;o) everyone was Okay- back in the "old days," or as CS would say the "Terracotta Days."
And yes, I know what you mean about relapse after having all the positive indicators - el stinky - beyond a disappointment for sure.
But anyhow, great to see you!! Talk to ya again!
MO
Yes, he did ask HR about the sups. We also asked another doc that did some of the first SAMe studies at Cedars and haven't heard. When we do I'll add it here.
Co
Co
I can't offer any opinion on your plan. I can only wish you the best. Here's to success and the "Third Time's a Charm"!
Good luck,
Brent
Good luck,
Brent
Hey guy, Gotta a question. You decided on what you gonna do if you RVR??
-----------------
We'll celebrate. He's letting me plan that part....LOL
Co
-----------------
We'll celebrate. He's letting me plan that part....LOL
Co
It's an interesting plan. I like the pre-dosing of ribavirin.
In terms of double-dosing the Peg .. I like the idea of double-dosing it in light of your history. Wondered what made you settle on 4 weeks as your figure for that.
I also like that you're going to go with higher riba as long as you can tolerate it.
In terms of double-dosing and higher riba and in light of the importance of dosage adherence particularly in the first twelve weeks, I don't see a rescue drug plan in there? Have you discussed with your doctor if he's willing to treat you with neupogen and procrit if your whites / reds tank to prevent dosage reductions and how do you feel about that yourself? Is that an option where you are? If you are at all considering throwing rescue drugs into the mix .. I would discuss this with your doc ahead of time and be ready to go as needed .. perhaps you might want to consider an iron stores test as a baseline to see where you're at in terms of responsiveness to procrit so that you can be pre-emptive about that or at least aware of your iron levels so that if you do start procrit, you'll know if you need to add iron to increase effectiveness. The insert suggests getting your iron stores tested once a month while on procrit ...so if you are including rescue drugs as part of your "package" you may want to consider this also but ONLY if you're not responding to it. (Somebody correct me on that please if I'm off the mark.)
Wondering what you think of tapering the riba along with the INF at EOT? I did note the inclusion of Alinia - in place of riba? Not doubting you, just interested.
I'm intrigued by what motivates your decision to taper period and I'd be interested to know as this discussion comes up from time to time.
I'm impressed..but then that is nothing new in regards to you. I wish you success and will be hoping hard for you.
Trish
In terms of double-dosing the Peg .. I like the idea of double-dosing it in light of your history. Wondered what made you settle on 4 weeks as your figure for that.
I also like that you're going to go with higher riba as long as you can tolerate it.
In terms of double-dosing and higher riba and in light of the importance of dosage adherence particularly in the first twelve weeks, I don't see a rescue drug plan in there? Have you discussed with your doctor if he's willing to treat you with neupogen and procrit if your whites / reds tank to prevent dosage reductions and how do you feel about that yourself? Is that an option where you are? If you are at all considering throwing rescue drugs into the mix .. I would discuss this with your doc ahead of time and be ready to go as needed .. perhaps you might want to consider an iron stores test as a baseline to see where you're at in terms of responsiveness to procrit so that you can be pre-emptive about that or at least aware of your iron levels so that if you do start procrit, you'll know if you need to add iron to increase effectiveness. The insert suggests getting your iron stores tested once a month while on procrit ...so if you are including rescue drugs as part of your "package" you may want to consider this also but ONLY if you're not responding to it. (Somebody correct me on that please if I'm off the mark.)
Wondering what you think of tapering the riba along with the INF at EOT? I did note the inclusion of Alinia - in place of riba? Not doubting you, just interested.
I'm intrigued by what motivates your decision to taper period and I'd be interested to know as this discussion comes up from time to time.
I'm impressed..but then that is nothing new in regards to you. I wish you success and will be hoping hard for you.
Trish
Point of clarification!
MyOwn when I said "remembering those posts brings a smile to my face" I was thinking of certain posts (I'm sure you remember those :) ) not your relaspe posts.
Relasping after having ALL the positive indicators for so long was one of the most disappointing things in my life.
It's good to see you fighting as well as all the others.
MyOwn when I said "remembering those posts brings a smile to my face" I was thinking of certain posts (I'm sure you remember those :) ) not your relaspe posts.
Relasping after having ALL the positive indicators for so long was one of the most disappointing things in my life.
It's good to see you fighting as well as all the others.
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