Naive OR Not; need advice

I really need someone to help give advice here. I really don't know what to say when I find a trial to call so I haven't called.

At this point, I am pretty confused and do not want to say the wrong thing while calling about a trial...do not wish to get booted from a trial for admitting to something that may not have been a big deal to begin with. I can use some feedback please. I only today found dr. notes from Miami and have full history.

In 1996 I did Alpha Interferon & although I cleared the virus, do not remember much about the treatment as I got infection after infection & was pulled after 6mo. I have done no other meds since? Today, I am once again looking to be treated for my HCV. I am 1b, a CC and just on this side of cirrhosis. My husband did a little research yesterday and found an article stating that if a patient ONLY did Interferon with no RIBA, if it was not Pegylated-INF then that patient is considered to be a Naive patient.

Furthermore, since there did not seem to be that much info (or he could not find it) we posted the same question to a couple of other forums. One person said that he had tried to get into 3 different trials. Under the medical/medicine portion of the paperwork, he does not remember there being a checkbox specifically for Alpha Interferon. So? Am I Naive? That is the question I need answered ASAP so I can tell the trial coordinators so I can get closer to a trial and and join the ranks of SRV.
Oh, My last lingering thoughts...

I don't want to get sicker than I am by doing drugs that do not interact well,
I do not want to be responsible for an inaccurate trial outcome and,
I most definately do not want others hurt from information held back.

May life bring you peace and kindness, ReneeTina

“Unless someone like you cares a whole awful lot,
Nothing is going to get better. It's not.” ― Dr. Seuss

I believe your best bet is to be totally truthful when speaking to a someone about a trial, just as if you're providing a doctor with information who is treating you. They can't treat what they don't know. And, you could throw off the results by fudging.

there are 2 schools of thought here. definition of tx naive is; never treated with drug or drugs that you will take. or do they mean never txed your hepc with any tx.
first; dont stress. you do have options. i would do what connie said,"let your dr list you". that way he/she can talk to the coordinator, to make sure it is appropriate for you.
also , at the 1st of the year you will have some options your dr can prescribe for. of course everyone has heard of sofosbuvir, but that will be released for tx naive only, if you are geno 1a or b. but for you there will be another drug released that you can use as tx experienced. there will be a triple therapy with int/riba/simeprivir. simeprivir is a PI. protease inhibitor. it is in the same class as inc and vic. when combined with int/riba for 24 or 48 weeks delivers high clearance rates with better tolerability. this tx is quite doable for you. your response to interferon in 96 and your CC allele, is favorable for this triple treat. protocol is; 12 weeks of int/riba/simeprivir, followed by 12 or 36 weeks of int/riba. you had problems with neutropenia in 96. today drs use neupogen for low neutrophils(category of WBC) that cause infections.
barry

As mentioned, thanks for the replied and feedback. My Original Topic/post NEVER meant for me to imply that I wanted to lie/fudge my way into a trial…any trial. As a matter of fact, I had closed by saying:

I don't want to get sicker than I am by doing drugs that do not interact well,
I do not want to be responsible for an inaccurate trial outcome and,
I most definately do not want others hurt from information held back. So...

The reason I posted was to get some input from hopefully seasoned individuals and as I just mentioned in my response to Connie, I was out of the loop due to severe, bedridden scoliosis. I've come to recently learn that from time to time there are trials for experienced as well as naive. I just did not know which category I really fell in. Also

With regards to the INF, I can't even begin to think of doing it again. Not only did I get so sick the 1st time that they had to take me off but I recently found out from someone I've met in a diff forum who also had (notice the word had) both Cryoglobulenemia and HCV that you should not treat HCV w/INF if you have Cryo. I tried to get to see her doc @ UCSD but sadly he was leaving university practice for research. Soon after I learned this from her I went to a new Rheum who also does research in Cryo. I learned that she was right!

I also have Fibromyalgia, Neuropathy & Thyroid Disorder from doing the INF in 96 (when I was much much younger). At 61 I just cannot see me taking the chance of ever doing it again. Hence the issue of looking for a trial. I want to be proactive, find a trial & reach SRV…like everyone else. Sadly, & I don't know why, but my Hepatologist has not offered his services to 'looking for a trial' for me. He only offers 3x TX and he does not (now we all know why) want me on it. Therefore that leaves me with trying to find answers and everything else on our (hubby and I) own.
Very late, said a lot. Peace & Blessings to All…. NanaR

Mike did int and riba in 2003, was very ill, did not clear.

He is on list for Gilead trial for post tp folks testing protocols of different duration and w and w/o ribavirin. No int.

This is open label, so you will know what you are getting.
So he was a nonresponder who has never tried one of this nd class of prot inhibitors.

I'm not sure what they mean by naive these days

Good luck

Mama lama

Post Edited By Moderator (hep93) : 10/20/2013 8:37:16 PM (GMT-6)

Hello All. Sorry about not responding sooner.
I never recv'd notice of additional comments so I thought y'all gave up on me. I guess it is best to answer ea. individually.

* Connie, I get confused easily. Didn't I read here where you only have 1x to pick a user name? If you know how to change my name, just, if you would plz, change it to peaceful Or peacefulgal (the beginning of my email) for me and let me know!

Thank you and Peace (see, I even use it in closing) and Blessings,
Peacefulgal

Mama Lama (love that name, girlfriend)

So sorry Mike, your hubby? Went through all that w/o clearing.

Happy to hear about Gilead (so far, in my book,seems to be tops in tx). Is that a definate trial where they are recruiting now, or something coming up the pike? How is Mike doing, feeling etc? I know, I get so so tired that I am tired of being tired (sure you've heard that). Oh, and the fog...geezzzzz my hubby is always saying "honey, try to find the word now"

I pray he is not feeling too bad.
Peace and Blessings...peacefulgal