Eureka! Doc on board with Alinia!

[gauf]

Just got the call from the NP and she says the hepatologist read my report and is enthusiastically on board with Alinia!  I will get my script! Sweeeeeeeeeeeeeeeeeetttttttttttt!!!!!!!!!!!!!!!!!!!!!!

[Forseegood]

you guys do remember that these companies dealing in Mexico and Canada passed muster with HR, he researched them thoroughly, which prob a lot of docs don't have time to do, sounds like you guys know more about Alinia then your docs anyway....hope it works out for all of us!

[Forseegood]

that's great...we can be crybabies together!

[ClippedWings]

Jim,
  I'm working now to get a referral to a hepatologist.  I fully realize that I'm well past the point that I should have seen a 2 log drop, but I just can't help but feel that I need to continue to do something.  I was on top of the world until I found out I had this disease 6 months ago.  Then to find out that I had cirrhosis and given a prognosis of less than 10 years (from my GI) was a real eye opener.  The sad thing is is that I have had a very easy time with the treatment.  I work a busy, highly stressful job, I have been able to work out, and I've lost 40 pounds of fat and look and feel better than I have in years (except the occasional bouts of fatigue.  All in all I wish my Gastro Doc would have let me do the mega-doses of Pegasys/Copegus that you recommended to me when I first started treatment.  I am positive I would have been able to handle it as my side effects have been very mild.  I think I'll talk to my doc about finishing the rest of the supply of Alinia I have (already bought and paid for), do another PCR, and make a decision at that time.  If no change, I'll probably stop everything, see a hepatologist (I'm near Seattle and have heard good things about the docs at UW), try to lose some more weight and try round two in a few months.  Thanks for your help and guidance along the way.

Gauf,
  I'll certainly take a look at your supplement information.   Thanks for posting it.  

[gauf]

Totally sucks. As a stage 4 you should look into the liver lovers supplement regimen that HR recommends. It helps us stage 4s' to buy time. You can find it on my profile and good luck.

[susan400]

Years ago, I used to get Zadaxin (Thymosin) imported from Mexico, through an FDA authorized company here in America.  It was all completely legal w/a doctor's prescription.  It, of course, didn't do anything for me, but several others swear it lessens the side effects of the other meds.  Also, it was expensive and not covered by insurance.

Susan

[jmjm530]

Sorry you didn't get the response you're looking for. As you probably know, without a two-log drop by week 12, your odds of SVR are very low even with extended treatment. You're now at what appears to be week 20 and still haven't had a one-log drop which firmly puts you in the non-responder category.

Hopefully, you're seeing a lgood liver specialist (hepatologist) who can help advise more whether staying on these drugs longer makes any sense. If not, this might be a good time to get a second opinion.

While making your own treatment plan can sometimes have benefits, it can be a slippery slope chasing a elusive two-log drop (or UND) by adding  this and that when no study data supports it. Newer drug treatments -- like the Alinia trials -- are now starting to be offered to those who unsuccessfully treated. This might be an option for you moving forward.

-- Jim

[ClippedWings]

Just got my PCR results showing the effect (or more correctly lack of effect) of adding Alinia to my Pegasys/Copegus treatment.  At 4 weeks on the three meds, my viral load is statstically unchanged.  I went from a VL of 116,000 to 173,000 after four weeks of Pegasys/Copegus/Alinia.  Just for comparison, my starting VL was 966,000 and I did 16 weeks of SOC before adding the Alinia.   I never came close to a 2 log drop.  I am a genotype 1A with cirrhosis.  I'll  keep at the triple therapy for another two months and then regroup if I see no results.  Will keep everyone posted.  Good luck to all.

[ladywhy]

guaf: Thanks..goin' to ur journal now.

gauf, St. George, Clipped Wings: I hope and pray this is jus the thing for all of you. That this will be the ticket to SVR!
You're in my prayers.
Please keep us posted
y

[St. George]

That would be so cool if you could post your PCR results next week since adding the Alinia.  It will give me some inspiration if they are favorable!
              Thanks George

[gauf]

Sorry, It has too many words to send via medhelp message mail. BUT, go on my profile, highlight it and copy. Then paste wherever you like.

[ladywhy]

ohhh...the last shall be first and the first shall be last... :)

Studies were done in Cairo, with geno 4's. Very very good results.. in combo w/peg/riba. You're right, it was manufactured for getting rid of parasites and an anti-diareh (I hate diareah..i refuse to spell it corrrectly:} Low toxicity to liver...it seems like a miracle drug at the moment. I am trying to get my dr. on board. My hep dr. says geno 4 and geno 1 are similiar.

gauf: Can you send me your report??

[gauf]

See my Journal entry on alinia to get caught up.

[triggertime]

Am I missing the boat on this one? Isnt alinia an anti direah med? Ive been off the infergen/riba since 10AUG07 and Ive never heard of this drug to treat hepC. Thats my life. Last in line.

triggertime

[merryBe]

well you are the golden boy!!!  
I am happy for you...thank God some docs want to kick butz on this virus as bad as we do.

I am way more comfortable with the Alinia study after seeing the supervision that was given to the immigrant population as far as shots and pills went.

Also I heard the Eygptian doctor's presentation was outstanding, humble, and very well attended (though not by my liver team).

A lot of how good a study is depends upon the sincereity and effort of the researcher, so we celebrate any and every leg up...especially if it "does no harm" as the other txs do considerable.
May you kick this pig skin out of the field!!!
maryB

[ClippedWings]

I was also able to talk my Doc into Alinia.  He was reluctant at first but I gave him information from the November liver conference and at our next visit he agreed that it would likely do no harm and left it up to me.  I started 3 weeks ago after my 12 week PCR showed me as a non responder (slighty less than a one log drop at 12 weeks). I am currently on Pegasys and 1200 mg Riba and addded 1000 mg Alinia (500 mg twice daily).  I will have a PCR next week to check the impact of the Alinia at one month and will share those results here.
  I started taking Amoxicillin a week after I started the Alinia and that combo was very rough on my stomach and digestive system.  As soon as I finished the Amoxiciilin I started feeling fine.  The only Alinia sides I have noticed is a loose stool and the coolest color urine I've ever seen- a a neon green/yellow kind of thing.  The color looks similar to the Alinia tablets. Other than that nothing.  I will add though that my body seems to tolerate the meds easily (the Amoxiciilin being the exception).  16 weeks on Pegasys/Copegus and I have occasional fatigue but that's it.  Good luck to all.
  

[orleans]

good luck dude, I won't be far behind. jerry

[St. George]

Thanks!

[Myown]

Good luck St. George!!

[St. George]

I start the Alinia, Infergen, riba "shock and awe" campaign tommorrow.  I have pre-dosed the riba for about a week and will be on 1,200 milligrams(like you) from here on out.  Lets keep in touch and good luck to both of us!  My only concern is that I am using daily Infergen instead of the peg used in the study.

[Myown]

That's great gauf!! My doctor didn't seem interested cause they only tested it on geno 4, but we know that and anyhow I don't see why it wouldn't be good for all of us. Maybe I'll mention it again to my doctor.

I'll check out your journal. Thanks for posting the info.

Wish you the very best!!!!!!!

[Willy50]

Congrats and thanks for posting on this.  A few questions for you or others;

1)  I'd like a few sources and prices.  It will be good to know how you will attack this and what the unit cost will be per week month year.

2)  What will be your tactic on starting TX?  Will you "preload" with anything; alinia or RBV?

3)  What are your plans for PCR's?   What intervals are planned?  I assume you are planning a year TX?

I assume you may be open to other peoples recommendations, studies, etc in this thread?  I think this may be important since the info out there is pretty sketchy and that any good input may be invaluable.

Best of luck and I hope you will keep us posted on your start and progress.

Willy

[orleans]

Alinia is experimental with reguards to hep c but unlike telaprevir alinia has been around for awhile, is known to be safe(approved for short term use down to 1 year olds) and has been used long term in HIV treatment with no known sx or long term issues.  Seems like a pretty good bet considering the lack of options out there. I wonder what your Dr is basing his opinion on? I would surly ask him. jerry

[cruelworld]

my doc just shot me down on alinia. he said he didnt think it would be nearly as effective against type 1 and might compromise my
treatment which is working so far. he is not a hepatologist though. i am actually a little bit relieved. alinia is still very experimental at this stage.

[gauf]

I have a journal entry in my profile that has lots' of info on Alinia including options on obtaining it. Also info on HRs' supplement recommendations if you are interested.