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Avatar universal

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
85 Responses
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Avatar universal
Great reading and I wish you luck as you embark on your journey.

And I thought I kept odd hours.....

Willy
Helpful - 0
Avatar universal
Rollin’ Rollin’ Rollin’ keep’em 180’s and Riba rollin’

It was actually 240's Geter.

Its only taken me 3 goes and twin shot but I have finally experienced Mild Flu Like Symptoms.

CS
Helpful - 0
568322 tn?1370165440
Instead of 1200mg of Riba daily, he increased it to 1400mg.
First Peg injection was last night.  Sides tolerable.

Co
Helpful - 0
Avatar universal
Rollin’ Rollin’ Rollin’ keep’em 180’s and Riba rollin’… raw hide…, fire’em up, move‘em out, move’em out, fire‘em up, to that roaring thunder… in the skyyyyy. Today is March 4th and them doggies are a rollin’… trying to keep there heads to the sky…, So, Head 'em up, move 'em out, Move 'em on, head 'em out… Rawhide!

LOL! hope all is going well!

jasper
Helpful - 0
29837 tn?1414534648
As a fellow non-responder (4 times), I wish you the best in what appears to be a direct attack on the enemy. Keep us informed as to your formulatory approach and your dissecting of various prong attack ploys.

There is nothing more successful than a fighter who wants to win. That's how champions are made in and out of the ring. My best to you and hats off to you for your enduring persistence. I'm in the same boat as you, and we are still afloat throughout the storm mate...

Magnum
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Avatar universal
To CS

I am a physician trained in pathology. I am very impressed by the amount of research you have done into HCV Treatment.    I have had HCV type 1a for 31 years.  I am now stage 3 fibrosis with a lot of inflammatory cells in the portal areas. I am treatment naive and about to embark on triple drug therapy.  My VL is 593,000.  I just started Alinia (off protocol) March 1st. I plan to start interferon and Ribavirin next month.  Liver and spleen are normal size.  I also have chronic lymphocytic lymphoma and many of the lymphoma cells are in the liver inflammatory inflitrate.  My CLL is quite slow growing and my major issue is the HCV.  I also have a borderline low platelet count (130,000) with giant platelets.  This means my platelet are being destroyed and the bone marrow is working overtime to make more platelets.  My oncologist thinks this may be an autoimmune process.  However, hypersplenism might also be a factor.

You mentioned a 13 page rational for your treatment (after 2 relapses) that you and your doctor agreed on.  I know this does not apply to my situation.  However, it probably has lots of information that would be useful to me for my own therapy.  Would it be possible to send me your treatment plan?  I would also be interested in the references you used.

I am fearful of the congnative/emotional complications of interferon therapy and the possibility of more severe thrombocytopenia (low platelets).

I know this may be asking too much as you are in treatment and may feel like shite.  I certainly understand if you can't fulfill my request.

Wishing you the best,

WP
Helpful - 0
Avatar universal
Remember Gothep?  Sounds like a copycat or same only new identity.  Unfortunate when a new member only posts two comments directed at the same person with a sexual overtone to it.  Hmm.   Time to ignore rather than feed the beast.
Trin
Helpful - 0
Avatar universal
Compared to you everyone is
Helpful - 0
568322 tn?1370165440
Talking back to me already, huh? : )

Co
Helpful - 0
Avatar universal
Riba is pure speed…

man, no wonder those 52 weeks were a comic blur, ronflmao.  

jasper
Helpful - 0
Avatar universal
I am concerned you do not have rescue drugs lined up. I couldn't have got far without them.

Its different for you Gauf. Being F4 you actually need EPO.
I dont have a problem dose reducing to deal with anemia.
Be different if i wasnt taking Alinia.

CS
Helpful - 0
Avatar universal
CoWriter - It's 2 am CS.  Why are you up?
Yes Mom it was. Riba is pure speed.

CS
Helpful - 0
144210 tn?1273088782
I am concerned you do not have rescue drugs lined up. I couldn't have got far without them.
Helpful - 0
568322 tn?1370165440
It's 2 am CS.  Why are you up?

Co
Helpful - 0
Avatar universal
"I don't see a rescue drug plan in there?"
-----------------------------------------------
No there isn’t a rescue drug plan.
I cant get EPO unless I am prepared to pay for it which I am not. Expensive shite.
And so long as I don’t need to dose reduce until after I am UND I don’t mind dose reducing.

G-CSF I could get but I am hoping I wont need it.
Alinia is a powerful anti bacterial so I am also hoping that covers somewhat for low whites.

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.
-----------------------------------------------------------
The High IFN dosing schedule is based on not having an unlimited supply of Interferon.
Although with what I am throwing at it, if I am not UND or close to it by week 8 then I am not going to be happy.
Also Jims had an impact on me. I want to come out the other side in the same condition or better as when I started. So there is a degree of risk management involved as well.

Wondering what you think of tapering the riba along with the INF at EOT?  
-----------------------------------------------------
You shouldn’t need to Taper Riba as its half life at the end of Tx is 12 days.
So it has its own inbuilt taper.

I am not going to Taper PegIntron as I cant work out how to do it without throwing away a truckload of IFN. For some reason I just cant bring myself to do that.
So I will take Alinia for 2-4 weeks after the Last Peg Shot. Hopefully that will be as effective as the IFN taper at taking out any remaining copies.

Thanks for the complement
CS
Helpful - 0
Avatar universal
If you start talking about having bright yellow children, I'll worry.  
And I won't like it!  LOL
--------------------------------
ROFL

Hey I know Alinia is glow in the dark yellow but its Riba thats teragenic
And no I wont be talking about Pink Kids with blue stripes either.

CS
Helpful - 0
Avatar universal
Hey guy, Gotta a question. You decided on what you gonna do if you RVR??
----------------------------------------
I am like you. I know i probably would only need six months but i will do 9.

CS
Helpful - 0
568322 tn?1370165440
"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. "
----------------------
He's going to go with.....

DoubleDose the first shot.
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
Then weekly.


Why?  Kinetics and availability of peg.


"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?"
------------------------
Rescue drugs are not allowed.  The last two times he treated, his hemoglobin, white cells and neutrophils remained normal.  He's hoping for anemia this time.


"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.) "
------------------
That's right.  Procrit won't work if you don't have enough iron stores.


"Wondering what you think of tapering the riba along with the INF at EOT?"
-------------------

He won't be tapering the INF because of issues with sterility.  Tapering the Riba? I don't see what for.  If you're anemic you'd want the anemia to go away quickly, not go away slowly.
  

"I did note the inclusion of Alinia - in place of riba?  Not doubting you, just interested."
----------------

Not "in place" of Riba....he's predosing BOTH Alinia and Riba and taking both the whole time.

"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."
------------------
He was hoping to be able to taper after EOT to give the immune system a chance to adjust and hopefully prevent relapse.  But it would be very difficult to measure the small doses with PegIntron since it comes in a pen.
Helpful - 0
568322 tn?1370165440
If you start talking about having bright yellow children, I'll worry.  

And I won't like it!  LOL

Co
Helpful - 0
Avatar universal
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
Helpful - 0
374652 tn?1494811435
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
Helpful - 0
Avatar universal
Bump
Helpful - 0
419309 tn?1326503291
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
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