new diagnosis

[jabbo]

I am a 42 year old male who was recently diagnosed with hepatitis c genotype 2. I contracted it in 1987 from a transfusion after an accident. I know very little about it as I have no health insurance and have had only one brief visit with a specialist. I have another appointment in August. My viral load is 5.9 million. I do know that I already have cirrhosis and am experiencing symptoms that include severe joint and muscle pain, pain around my liver, head aches and fatigue.  I would greatly appreciate any information on the disease and treatment that any one who has experienced this already could offer to me. Please don't hesitate to tell it like it is. Thanks.

[jberlin]

Sorry you are going through this.  I suggest reading through other posts here, as there are similar discussions you will learn from, but from my vantage point I don't understand why you are waiting until August.  You should get treated, and now!  No it is not easy, or fun, or inexpensive, but your alternatives are much worse.  There must be public assistance out there somewhere, and waiting could make this far more expensive and dangerous.  Geno 2 patients in trials with telaprevir (Incivek) went to undetectable in 15 days on average (treatment time is still the full 24 weeks I believe currently).  My advice is to pick up the pace to get treated.  Good luck, and let us know.

[jabbo]

thank you for the advice jberlin. I am presently enrolled in an assistance program at the Kirkland clinic in Birmingham, the next available appointment is the one I have in August. I am very anxious to get started with my treatments. I am just unsure of what to expect. Thank you again for your advice, any more that you have will be welcomed and appreciated.

[jberlin]

Well, I just worry that you get there in August, and they decide to schedule you for a liver biopsy, out several months, then schedule you to come back, and around and around you go...  By August your liver could be healing itself!  Have you had a biopsy?    I assume you know to stay away from all alcohol - also fruits and leafy vegetables are supposed to promote liver health, also I would take milk thistle everyday (not proven, but evidence seems support it helps the liver - so why not).  And I think you should try to see if you can hurry the process, or try another clinic, find a clinical trial, something - it is your liver, your life.  1.  Call Vertex and ask http://www.incivek.com/vertex-gps-overview  2. See if you qualify for any of these trials:  http://www.clinicaltrials.gov/ct2/results?term=hepatitis+c+genotype+2&Search=Search  I know it is a fishing expedition, but worth a try.  Good luck....

[jabbo]

I have not had a biopsy yet. my doctor did say that when I came back that we would discuss treatment and maybe do a biopsy. We had not heard the results of my test at that time, including a sonogram that came back as cirrhotic. The liver center there is so backed up with patients that it takes forever to get an appointment, to make matters worse, the doc I saw to begin with has left and went somewhere else making the backlog even worse. I am ready to get started and try and put this behind me. I have not touched one drop of alchohol in almost three years but in the years before that I was a terrible alchoholic. I drank a half-gallon of whiskey every night for several years. Thank God that I found the guts to quit when I did or this could be much worse than it already is. Thank you for your time and advice, I have not even told my own family about this yet, and have no one to talk with about it. It will help to have some one to chat with about all of this.   Jeff

[jberlin]

Jeff, if you are on facebook there are a couple of semi-active pages out there for Hep C which may help broaden your online support, but you need to involve family as going through this alone would be much more difficult, especially if you get on treatment which is depressing enough.  I suggest you hunt around for clinical trials and other treatment options like I suggested earlier, but one way or the other that you get scheduled for treatment as soon as you can.  Also, I will poke around too and if I hear of anything I will pass it on, but right now I hope you will try and drive this faster. 

Devon Nicholson, the wrestler, has geno 2, and is keeping an informative video blog on his Incivek triple therapy.  Worth a look, and there are some other good video diaries on youtube I found helpful as I went through this treatment.   http://blogs.hepmag.com/devonnicholson/

Keep us informed.  -jack

[jabbo]

thanks again for the advice Jack. I have been infected since 1987, my viral load was 5.9 million at last count back in September of last year. Is that about average for someone who has been infected for the amount of time that I have, and does the load determine the amount of time that I will need to be on the treatments?

[jberlin]

I am not sure what the viral load tells you...  I was infected in 1976, and my count seemed to go up and down between 4 mil and 10 mil - and the MDs didn't seem to make anything of it.  The thing they will look for is the drop in your start count (baseline) versus every 30 days of treatment.  Current labs can't count less than 7 viruses in a sample, so <7 is considered UD (undetectable).  Keeping the math simple, if your count was 7 mil and you went UD, that is a 6 log drop, and they want to see a min 4 log drop in 30 days, so for you anything less than 590 would be great...  but with Incivek they are seeing many, perhaps most, with more than 4 logs in 2 weeks, and UD at 4 or less weeks.  Most patients are not tested that often, but they saw this in trials.  I just want you to find a way to start being treated and get that liver of yours on the road to recovery.  -jack