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TONITE'S THE NITE, A simple treatment plan.

Well, it's time.  I want to briefly lay out my simple treatment plan, 2 1/2 years in the making, and the back story. Dx 02/06, G1, vl 216,000. Infected late 1970/early 1971. Means of infection was either drug use or mass immunization at basic training (less likely). Acute illness 3/71, the only time in my life to ever been hostipalized. Had not been to a Dr. since discharged from the military 1974. Pain put me in the ER( gall stones) and that's when I found out. What a shocker! My drug days were decades behind me and had been living a healthy lifestyle for some time. After dx I started educating myself about hep c and it's treatment. What I was finding was NOT GOOD. The treatment (soc) was dangerous, could be debilitating, could cause permanent, serious damage, was expensive, and to top it all off was NOT so very effective! The soc SVR rate runs around 40%(I know the 50%# is what is generally thought but a closer look at the numbers, ie. studies, would support 35-40%) I felt fine, physically, as I always had so I wasn't going to jump into anything. Bx 1/07 3/1, my, my, more bad news. By this time Telapevir had hit the news, 12 of 12 undetectable within 28 dosing days,(all monos relasped) several folks on Med Help in the trails, very exciting. Decided to hire a natropath in hopes of helping my liver hold out for a while as I awaited the results, a dangerous game as a stage 3. Big liverhead conference in Boston Nov. 07 should tell the story. This forum was-a-buzzin'!! In the mean time I was given the chance to take part in the next round of Telapevir trails. Well, the results were not as good as we had hoped and the sx were down right daunting. 61%  SVR (75+%was hoped for) 20% drop out rate, but a significant improvment over SOC none the less. So I had made my decision, in spite of the many negatives ( extra bad sx, high drop out rate, moderate SVR % #s, 25% chance of "drawing" the control arm, unability to take advantage of rescue drugs) I felt, being a stage 3 this was my best course of action. A funny thing happened at the conference though. There was a poster that I had only heard the slightest of wispers about. Romark revealed their Stealth-C Alinia results. ( Basicly they were 79% 12 week SVR, 0 relaspers, with the control SOC at 43%, NO additional SX) Alinia was already on the shelves, approved for use  in down to 1 year old infants, prescribable off label, obtainable online w/o a script, and affordable. Only problem was that the trail was done in Egypt with Geno 4s, a type easier to treat than g1s but harder than g2 or 3s.  Here is a thread from that time  http://www.medhelp.org/posts/show/338944 This really thew me off my stride. I had to rethink my plan. Decided against the Telapivir and asked my Dr if he would prescribe Alinia: he said "no problem". (I had already decided to purchase it over seas if he refused but kept that to my self!) SO, here's the plan--
22 Responses
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144210 tn?1273088782
No, but 400 mcg a day is inexpensive and there are some studies saying it is an immune booster. I will look for the abstract.
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Avatar universal
Does selenium have a relationship to PPC? jerry
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144210 tn?1273088782
1800 is the minimum recommended. Up to 3600 is the high end so 2700 sounds good. It is what I take. I would add 400 mcg Selenium daily.
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Avatar universal
The German study HR refered to (above) calls for 1800mg. My ex-nathropath had me on 2700 twice daily. I threw in the other 900 to hopfully augument my liver's sam-e production. Thanks for the encouraging words guys & gals. love, jerry
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179856 tn?1333547362
WHAT I WOULDN"T GIVE FOR A FEW WEEKS WORTH OF VX-950!!!!!


Smart move - look at what happened to Susan400, did fantastic the first few weeks but then didn't have the riba.  Of all of the things - getting the vertex but not having the riba ... and THEN they won't let her redo another vertex trial with all three meds because they say she know has built up an immunity!

It's great that people do trials but as a stage 3 I think honestly...save it until (IF) the FDA approves it so you make sure you get all three meds and don't have that immunity to the tele problem you know?

(Plus - with all the new data out now and knowing as close to UND at week 4 as possible and about extending to 72 weeks the odds ARE getting higher in our favor is good news).

Good luck!!!!!!!!!!
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238010 tn?1420406272
Curious as to how you arrived at 2700 mg for PPC.  I think HR recommended 3600 mg, but that was for someone with cirrhosis.

smaug

PS: you aren't the only one that has felt like Bruce Berry
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144210 tn?1273088782
Well thought out dude!  Go kill the buggers!
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541844 tn?1244309824
Thanks for the details.  I follow your story closely, so thanks for telling it.
Glad to hear the first night wasn't too bad.   May they all be that way or better.  
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Avatar universal
I feel like Cool Hand Luke -  just keep getting back up!!  I should stay down but it's just not in me!!  One more punch.
Trin
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Avatar universal
Whew -  you know what?  Tx is a crapp shoot -  doesn't matter how much to this or that you take - bottom line is either you're cured or your not.  After the fact, either way maybe will start messing around with some supplements or fibrosis reducing stuff, but for now, I'll just take my chances.  Haven't seen one time where low RBC, ANC or platelets was staved off completely by the use supplements.  Seems the odds are about the same for everyone - regardless.
Trin
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206807 tn?1331936184
My plan was not quite as complex.
I call my plan “The Rocky Plan.”
If you can stay in the Ring and get the Living Cr@p beat out you, some how you always manage to win the fight.
Good Luck and keep your head down, R. Glass
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Avatar universal
Hey, My grumpy DR wouldn't write the order--No, New Orleans is my birth place. pvk, ditto eureka on the trail. Couldn't come up with a reason to chance getting in the control. This was a major factor in deciding against the Telaprivir trail. WHAT I WOULDN"T GIVE FOR A FEW WEEKS WORTH OF VX-950!!!!! I'ld add it for sure. jerry
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419309 tn?1326503291
The study is called STEALTH C-3.  Great info at:

http://www.clinicaltrials.gov/ct2/show/NCT00637923?term=alinia&rank=1

Because it's a double-blind, there would have been a 1/3 chance of not getting the alinia, so my husband plans going straight for it off-label.

Good luck!
~eureka
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Avatar universal
pvk
Isn't there a trial going on right now for geno 1 with alinia plus SOC?  Maybe it was mentioned somewhere in the above discussion, but I missed it.  Anyone know anything about it?
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419309 tn?1326503291
"simple plan..."
----------------
Whoa.  I get sympathetic brain fogged just trying to wrap my head around it all!  "...there is so much info" is right!  It's sounds like you've got a great blueprint, though!  Thanks for wrapping it up so nicely in all of the above.  My husband is hoping to be able to start a similar plan, predosing w/Alinia starting 10/1. (The hep doc said he'd have only a 25% chance starting out w/standard SOC, so...)

Please do keep us posted.  I'll be praying for UND at 4wks for ya!  (Wondering, did you do a PCR both pre Alinia and after 4 weeks pre-dosing, or not?--- would be interesting to see what impact the Alinia alone had if any...)

Hope the puny feelings go away fast.  Wishing you minimal (or better yet, NO) sx!
~eureka

btw... does your name by any chance have any relevance to:
http://www.youtube.com/watch?v=GiDOjrxcQ5o
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Avatar universal
Herein lies the problem, there is so much info, so many studies, tests, etc, etc, blah, blah, blah! I tried supps. twice. Once I hired a well known, (very expensive) nathropath to work me up a regimen. Six months later my alt/ast had tripled. Stopped them and a month later they were nearly within normal range. (the best ever) The second time I used HRs list, via Gaufs' compilation. Neither of these guys are the dullest knives in the drawer. Gauf had great results as did a number of other forum members. My enzymes spiked again. This time they have stayed up. Is this because of the supps? I kinda doubt it, more likely just a reflection of where I am right now. For some reason my liver does not respond well to one or more of the supps. It is really too bad because both times they had me feeling REALLY good, even had a positive impact on my nearly chronic migraines. One can drive oneself batty trying to get a handle on it all.  I plan to look hard at oxymatrine and lactoferon but only after I become UND Sparrow- Yes, I did look at SAM-e, even purchased some but decided not to. My understanding is that ample PPC will cause my body to produce all of the sam-e needed.---Fret-The oils are for no particular reason other than I think they are generally benifitial, harmless, and I take them with my Alinia to hopefully help with absorption. (I also eat something high fat) My great hope for a little edge is the Alinia. The 4 week lead-in study included 3 geno 1s and 1 g2. All of these guys are in the 12 week SVR group. With all I am doing, have done, along with a couple of things that just are, my hope is to increase my chances well above 40%. jerry  ps the shot went well last nite, a little nausea and feeling a little puny today.
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Avatar universal
So,are you saying its ok to take these supplements while on tx???....SAMe and TMG...my diet this time around will be more simple  lots of organic green foods and fruits and nuts   organic whey and eggs for protien...im now cautious of taking sny sumlements...even with these studies you posted i think everyone body is different...i say KEEP IT SIMPLE
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408795 tn?1324935675
"The soc SVR rate runs around 40%(I know the 50%# is what is generally thought but a closer look at the numbers, ie. studies, would support 35-40%"

Hope you're doing well and glad to hear you've done your research and put together a well thought out plan.  I don't know if I would use the additives that you referrence, "I also take 2000 mg of both salmon oil and flax oil".  Maybe I missed the logic for that addition, if I have please clue me in.  I'm in the middle of getting a 2nd opinion, so I'm heavy into the research stuff myself.  Good luck with your tx, and keep us posted.  See it's most likely a good idea you put those Lora's away.  You may not need them and hopefully you don't, but at least you have them if you do.  Here's to minimum sx's.  Oh, I almost forgot.  The top sentence, my GI told me that very thing.  God Bless  


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568322 tn?1370165440

A study done last year showed that Vitamin E  enhanced HCV RNA replication.



June 2007

Comprehensive Analysis of the Effects of Ordinary Nutrients on Hepatitis C Virus RNA Replication in Cell Culture.

To date, only a limited number of studies have reported finding an influence of ordinary nutrients on hepatitis C virus (HCV) RNA replication. However, the effects of other nutrients on HCV RNA replication remain largely unknown. We recently developed a reporter assay system for genome-length HCV RNA replication in hepatoma-derived HuH-7 cells (OR6). Here, using this OR6 assay system, we comprehensively examined 46 nutrients from four nutrient groups: vitamins, amino acids, fatty acids, and salts. We found that three nutrients—ß-carotene, vitamin D2, and linoleic acid—inhibited HCV RNA replication and that their combination caused additive and/or synergistic effects on HCV RNA replication. In addition, combined treatment with each of the three nutrients and interferon alpha or beta or fluvastatin inhibited HCV RNA replication in an additive manner, while combined treatment with cyclosporine synergistically inhibited HCV RNA replication. In contrast, we found that vitamin E enhanced HCV RNA replication and negated the effects of the three anti-HCV nutrients and cyclosporine but not those of interferon or fluvastatin. These results will provide useful information for the treatment of chronic hepatitis C patients who also take anti-HCV nutrients as an adjunctive therapy in combination with interferon. In conclusion, among the ordinary nutrients tested, ß-carotene, vitamin D2, and linoleic acid possessed anti-HCV activity in a cell culture system, and these nutrients are therefore considered to be potential candidates for enhancing the effects of interferon therapy.


http://aac.asm.org/cgi/content/abstract/51/6/2016?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&searchid=1&FIRSTINDEX=0&minscore=4000&resourcetype=HWCIT
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476246 tn?1418870914
Thank you for sharing your plan. I hope the shot went well and that you will have the least sx. You're 10 days ahead of me.....

Marcia
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Avatar universal
I quite like your little plan.
Its good to know that I am not the only one that feels that Telapevir is not all that its cracked up to be. I want to know what happens to those it fails.
Are they now even harder to Tx?

Your timing with the painkillers might be out.
Tylenol takes around 1 hour to start to work. (Unless you use a faster acting one). And its effects last for 4 hours before you need another one.
The initial sides from Peggy occur around 4 hours after the shot. This can vary though.
So Tylenol taken when you have the shot starts to peter out just as the sides start to kick in.
Take the pain killer around 2 hours or so after the shot. You might have to play with the timing a bit. The idea being that you want the pain killer kicking in just before the sides do. Not hours before.

One thing with PPC if it has an oily film covering the capsules then it might be wise to chuck em out. My feeling is they are starting to oxidise.

One thing you might want to consider adding is SAMe and TMG.
Heres is a study onSAMe and IFN signaling.
S-Adenosylmethionine and Betaine Correct Hepatitis C Virus Induced Inhibition of Interferon Signaling In Vitro
(HEPATOLOGY 2006;43:796-806.)
Hepatitis C virus (HCV) infection is an important cause of chronic liver disease. Standard therapy, pegylated interferon a (pegIFN_) combined with ribavirin, results in a sustained response rate in approximately half of patients.
The cause of treatment failure in the other half of the patients is unknown, but viral interference with IFNa signal transduction through the Jak-STAT pathway might be an important factor. We have shown previously that the expression of HCV proteins leads to an impairment of Jak-STAT signaling because of an inhibition of STAT1 methylation. Unmethylated STAT1 is less active because it can be bound and inactivated by its inhibitor, protein inhibitor of activated STAT1 (PIAS1). We show that treating cells with S-adenosyl-L-methionine (AdoMet) and betaine could restore STAT1 methylation and improve IFNa signaling.
Furthermore, the antiviral effect of IFNa in cell culture could be significantly enhanced by the addition of AdoMet and betaine. In conclusion,
we propose that the addition of these drugs to the standard therapy of patients with chronic hepatitis C could overcome treatment resistance.

OK I know it was only done in a lab but there are two studies currently being run to test it out.
And of course they advise against doing this without bein in a study, but what the heck.

AdoMet and betaine are both nontoxic substances that are available in many countries without prescription, and it might be tempting to add them to the current standard therapy with pegIFN_ and ribavirin.
However, we would advise to use these substances only in the context of well-designed clinical studies.

Two studies investigating SAMe and TMG (AdoMet and Betaine)

Effects of S-Adenosyl Methionine (SAMe) on Viral and Cell Signaling Response to Combination Therapy for Chronic Hepatitis C
http://clinicaltrials.gov/ct2/show/NCT00475176?term=Hepatitis+C&rank=8

This study will examine the effectiveness of S-adenosyl methionine (SAMe) in combination with peginterferon and ribavirin for treating hepatitis C virus
This study will assess the effects of SAMe on antiviral responses to peginterferon and ribavirin in patients with chronic hepatitis C, genotype 1, who have failed to respond to a previous course of therapy.

After screening evaluation, patients will receive a first course of 2 weeks of peginterferon alfa-2a (180 micrograms weekly) and ribavirin (1000-1200 mg daily) during which symptoms, routine laboratory tests, HCV RNA levels, natural killer (NK) cell activity, and lymphocyte interferon-signaling responses will be monitored.

After a 4-week washout period, patients will start SAMe (800 mg twice daily) for 2 weeks and then begin a second course of peginterferon and ribavirin in the same doses with similar monitoring. Therapy will be continued for at least 12 weeks, and patients with an early viral response will continue for a full 48 weeks. The primary criterion for efficacy of SAMe will be improved HCV kinetic responses comparing the first and second courses of peginterferon and ribavirin. Secondary endpoints will be improvement in NK cell activity and intracellular interferon signaling.


There is also a Swiss study that is using SAMe and TMG

Chronic Hepatitis C Non-Responder Study With AdoMet and Betaine
http://clinicaltrial.gov/ct2/show/NCT00310336?cond=%22Hepatitis+C%2C+Chronic%22&rank=182

50-60% of patients with chronic hepatitis C are not cured by treatment with pegylated IFNα plus ribavirin.
Retreatment of non-responders of previous (pegylated) IFNα plus ribavirin therapies with pegylated IFNα plus ribavirin results in a sustained response in less than 10% of the patients.

Extensive analysis of IFNα signaling in cells expressing HCV proteins, in transgenic mice expressing HCV proteins, and in liver biopsies from patients with chronic hepatitis C point to STAT1 methylation as an important posttranslational modification targeted by HCV to inhibit IFNα signaling.

STAT1 methylation can be increased and IFNα can be improved by adding AdoMet and betaine.

The study is designed to test the hypothesis that a combination treatment with pegylated IFNα2b, ribavirin, AdoMet and betaine is superior to the current standard combination therapy with pegylated IFNα plus ribavirin.

The study is designed to test the hypothesis that a combination treatment with pegylated IFNα2b, ribavirin, AdoMet and betaine is superior to the current standard combination therapy with pegylated IFNα plus ribavirin.


Anyway wish you Well
And heres hoping the Winged Horsey don’t kick too hard.

CS
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Avatar universal
1.TUNE and TWEAK my diet, Nothing too strange, lower and better fats, almost no red meat, fresh and organic vegies, etc. Started this at the begining. Also avoid all chemicals, solvents, cleaners etc. (not easy in my line of work)

2. Start an exercise regimen, mostly biking and hiking. Best shape I've been in in years and years.(BMI was alredy ok)
3. I started pre-dosing Alinia 7/7/08 ------
4-week Lead-in
In a related poster, the investigators presented results from a study in which the lead-in nitazoxanide monotherapy phase was shortened to 4 rather 12 weeks.
In this study, 44 treatment-naive Egyptian patients (40 with genotype 4; 3 with genotype 1; 1 with genotype 2) received 500 mg twice-daily nitazoxanide for 4 weeks followed by nitazoxanide plus 180 mcg/week pegylated interferon for 36 weeks, without ribavirin. Sustained response rates at 12 weeks (SVR12) were reported.
Results
• 80% of patients treated with the 4-week lead-in dual therapy regimen achieved SVR12, compared with 50% in the standard-of-care arm of STEALTH C-1 (used as a historical control) (P = 0.004).

• RVR, EVR, and ETR rates for the 4-week lead-in, as well as the 12-week lead-in in STEALTH C-1, are shown in the table below.

• All the genotype 1 and 2 patients responded to the 4-week lead-in regimen.

• Adverse events were similar to those observed in STEALTH C-1.

• There were no serious adverse events or discontinuations due to adverse events.

The investigators concluded that, "The nitazoxanide lead-in phase used in the STEALTH C-1 trial can be reduced from 12 weeks to 4 weeks without compromising RVR, EVR, and ETR rates."
The results from these 2 studies "confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," Rossignol said in a press release issued by Romark. "These data also provide interesting insights into the mechanism of action of nitazoxanide and confirm previous findings related to its safety."
The second study, he added, "show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks with no apparent impact on virologic response rates." (More Alinia info-http://www.medhelp.org/user_journals/show/2391 ) I have experience almost no sx from Alinia.
4. 800mg E, 1000mg C daily to help with anemia as per Dr. E.R. Shiffs' Tx Reporter ( I found this report to be very helpful and have given copies to my family so they might be more prepared for what may come) http://www.projectsinknowledge.com/Init/G/1603/order.html

5. 2700 mg daily PPC ---PubMed study at: http://tinyurl.com/6jmsey

PROLONGED PPC THERAPY GIVEN TO RESPONDERS BEYOND THE CESSATION
OF INTERFERON THERAPY TENDED TO INCREASE THE RATE OF SUSTAINED RESPONDERS AT WEEK
48 IN PATIENTS WITH HEPATITIS C (41% VERSUS 15% IN THE CONTROL GROUP; p = 0.064).

BACKGROUND/AIMS: Polyunsaturated phospatidyl-choline (PPC) has been shown to
reduce serum aminotransferases in experimental hepatitis. This multi-center,
randomized, double-blind, placebo-controlled trial evaluated the effects of PPC
in patients with chronic hepatitis B and C in combination with interferon alpha
2a or 2b. The diagnosis of chronic viral hepatitis was based on an abnormal serum
alanine aminotransferase (ALT) value (more than twice the upper value of normal),
viral replication and chronic hepatitis found on liver biopsy. METHODOLOGY:
Patients received 5 million I.U. (Hepatitis B) and 3 million I.U. (hepatitis C)
interferon s.c. thrice weekly for 24 weeks, respectively, and were randomly
assigned to additional oral medication with either 6 capsules of PPC (total daily
dose: 1.8 g) or 6 capsules of placebo per day for 24 weeks. Biochemical response
to therapy was defined as a reduction of ALT by more than 50% of pre-treatment
values. The responders were treated for further 24 weeks after cessation of
interferon therapy with either PPC or placebo. RESULTS: 176 patients completed
the study protocol (per-protocol population: 92 in the PPC and 84 in the placebo
group). A biochemical response (> 50% ALT reduction) was seen in 71% of patients
who were treated with PPC, but only in 56% of patients who received placebo (p <
0.05). PPC increased the response rate in particular in patients with hepatitis
C: 71% of those patients responded in the PPC group versus 51% in the placebo
group (p < 0.05). PROLONGED PPC THERAPY GIVEN TO RESPONDERS BEYOND THE CESSATION
OF INTERFERON THERAPY TENDED TO INCREASE THE RATE OF SUSTAINED RESPONDERS AT WEEK
48 IN PATIENTS WITH HEPATITIS C (41% VERSUS 15% IN THE CONTROL GROUP; p = 0.064).
In contrast, PPC did not alter the biochemical response to interferon in patients
with hepatitis B. PPC did not accelerate elimination of HBV-DNA, HBeAg and
HCV-RNA.
CONCLUSIONS:

In conclusion,
PPC may be recommended in patients with
chronic hepatitis C in combination with interferon and after termination of
interferon in order to reduce the high relapse rate.
6. THE DREADED "SOC"
(I also take 2000 mg of both salmon oil and flax oil along with Culturelle and Jarrow probiotics, 1 .5 tbl lactolose and 2 tsp inulan daily)
WELL, here I sit, started the Ribavirin this morning, NOT even ready or wanting to do this injection. Here's kinda how I'm feelin' 'bout now    http://www.youtube.com/watch?v=03SmkMXR7MU It's 11.55 and I just dropped a 500/5 loratab (why go with tylenolPM when you squirreled back a couple of loras for a rainy day, heck it's POURING!!) Better go to the fridge and get the shot. signing off, jerry



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