How can I get into a study?

[littlewing1010]

How can I get enrolled in a Albuferon or other drug study.Researching online taught me about the Mt Saini study and then to this sitebut nothing more. I have no insurance and have been in denial about my diagnosis 3-4 years ago. I think I actually started drinking more than I did before which wasn't much. I told my daughter,a couple of friends and family  but after seeing how distraught (14 at the time) my daughter became and how other people feel about this disease I told everyone it was a mistake. I am increasingly tired ,cloudy and spaced out,have developed sever arthritic symptoms (I hobble around and can't use my hands for about 15 min in the morning and am living off of Naproxen) and  am depressed. I have accomplished nothing since I found out. I have some success in my field (behind the scenes in film& television) but am letting everything fall to pieces around me. I am attractive,athletic and no one would know,but I live in fear of this.Sorry I am rambling,I have no one to speak with regarding this situation. I was going to try the natural route,but I now want to tackle this head on. Today is the first time I have researched anything in a year I am ashamed to say...Please help if anyone can. I will call Mt Sinai tomorrow. Oh yes,I live in NY and also,please excuse me if this is the wrong place to write.  

[littlewing1010]

Thank you both for your responses.I will try the search box.MerryB gave me some good advice and I am waiting for some info from the mail to see if I can get into a trial in MD. i am nervous as I understand tratment can maybe make things worse. Also,NYgirl, I can imagine that tellig them you are depressed would be a problem and that is something I would have NEVER thought about. This is all so helpful. I hope in the future I can be of help to someone. xx

[littlewing1010]

Thank you for writing me back...since I posted here a few days ago I called the GI that gave me the biopsy (in answer to the question) and the nurse said I was geno type 1. That was from 4 years ago. Could that change? I don't even know what that means,but I realize it is time to find out. It was so kind of you to write a stranger for no reason. I am still afraid to go to the doctors to ask questions,and I do not think I  can tell my kids for a long time. When I hear talk about this disease or about people in the news with it, its sounds like they are talking about people with leprosy or aids or something.I work in entertainment ( I touch stars) hehe, as a  makeup artist and I am sure I would never get hired again if anyone knew. Mean while, I feel like I am giving myself a death sentence. Thank you for your advice. you are cool, and you ride a bike!!! This is a precious interaction for me..

[Lady Lauri]

I knew I'd answered you somewhere! Coping to your current post here. LL


Hi, welcome, please keep reading here and talking. This is the 'right' place to write. People here from all over the world.
  
  There is much to learn, decide and you are now facing this and it seems you have not done well thus far in that. You need to face it, accept it, learn about it and decide how to deal with it. Ignoring it will only fester in you, as it seems it has been doing.

  First, you said little on what you  know so far. I will assume it IS Hep C! Have you any test yet as for geno type, any liver damage? These things are a must. Take a breath and realize this is not a death sentence, it is a slow progressing disease, can be treated, often cured and getting all your facts together will get you closer to knowing where you are in this. As said so often on this site, knowledge IS power and gives you some sense of control in your treatment and life with this.
  
  I'll also assume you need a trial as per no insurance?? Not knowing what geno type you are.....there may be  trials going for a certain type, etc. and if your type 2, less time to treat and so on. Many teaching hospitals have programs to get you the treatment you need.
You are in one of the best places to get help, advice, support, learn and lesson your fears and anxiety here. This is a wonderful site. For today, maybe make just  the plan of getting more info., geno type and than piecing all your questions together and getting answers.
It is time to deal with this as it seems to be destroying your life and it just doesn't have to be that way. And also, drinking at all IS destroying your liver with Hep. You HAVE to stop all drinking.
  If you have more info., or questions, please post.  We'll reply.

  Make today the 1st day towards handling and moving towards treatment and possible cure. You and your family need to realize this can be helped, can have a happy ending and needs to be a priority in your life and future. No more denial!

Hope to see more post from you, many here to help.

                                                                                                 LL

[nygirl7]

and  am depressed


Interferon can cause people who don't even have a prior history of depression to become suicidal.  A doctor would be very leery of letting you do treatment and it's not the kind of thing you want to lie about.  I have no history and had to start taking Paxill a month BEFORE  I started treatment just in CASE.....

If you are seriously depressed - you are going to HAVE to have some antidepressent on board before you do treatment.

Be careful!

[FlGuy]

go to     www.clinicaltrials.gov

in the search box enter (for example)  hepatitis, miami.  That should give you an idea of some of the trials in your area.  Each has inclusion and exclusion criteria to help you narrow down ones that may fit your situation

[DebInDenver]

Thank you!  It was a long time ago....

[littlewing1010]

I wasn't thinking of "that",but I appreciate the tip..hehe
I'm glad your attempt,was an attempt not brought to fruition,but sorry for your despair at that age...

[DebInDenver]

Whatever you do, never tell them of previous suicide attempts.  You will be taken out of the running for any studies.

I attempted suicide at 13 years old.  I'm 52.  They refused me for 3 studies because of the suicide attempt.  *scratching head*  My doc went apeshit.  I am now labeled the "problem child" in my docs office.  *laughing*

[littlewing1010]

I am grateful..thank you for taking the time to write..I will start now
*A*

[merryBe]

google "drug trials hep C"......go to the government site for clinical trials, search pupmed, NIH also.
there are ways to get free drugs from the companies. keep this thread thing up at the top, or read the threads for the last 2 days, lots of info about free stuff was posted, maybe whoever posted that various stuff will post it all again. Hope so...

Foreseegood maybe??

my mind is a sieve right now or I'd go find it for you.