Newly diagnosed Hep C

I was just diagnosed with Hep C, genotype 1. I'm between a stage 3 and 4. No symtoms (symptoms). A fluke that I even found out about it. My liver functions were slightly elevated last year so I wanted to recheck them this year and they have quadrupled. So that led to tons of blood tests, MRI's, liver bx, etc. I'm changing docs to one who specializes in this. Have seen him once and he told me everything I found out from the biopsy by just looking at my labs, history and physical. Seems to know his stuff. He wants me to start on the Interferon and Ribavirin soon. Says they are starting a new study soon to include Telepavir??? Any info you can give me on all of this. I'm researching,etc. . Figure I got the Hep C from some blood transfusions I had as a kid in 1969. Been there quite a while. Kind of scary to think I could have something this bad and not even have one symptom. I feel fine right now. Also scary to think I could be taking all of these meds that are going to make me feel like **** when I feel fine. Could use some feedback from someone who has been there already. Thanks.

[jmjm530]

Welcome to the forum. Yes, "Telaprevir" is very promising and a number of folks here have treated in some of the earlier Telaprevir trials. Most were successful. I'd say go with the Telaprevir trial if you can get in, but make sure you read the specifics of the trial as there can be pro's and con's for any individual trial. Best person to see regarding diagnosis and treatment is a liver specialist (hepatologist). Sounds like you already found one so I'd stick with him if you guys connected. Given that you're a between stage 3-4, the advice to treat is very sound, regardless of how well you may feel presently. Many often have no symptons until they're well into stage 4, and you really don't want to go that far. Successful treatment can often stop and even regress liver damage.  

All the best,

-- Jim

[wed1942]

Thanks for the quick response. I feel like I'm in limbo right now. I'm trying to get as much info as I can before going to the docs so I can understand what they are telling me when I'm there. I have heard that being in a trial can give you problems with your insurance coverage. Something about the state and how it complies with medicaid regulations???? Some folks have had things denied that would have normally been covered because they are in a trial. I'd have to find out the details about my coverage before I consider this for sure. Can't be without insurance. I'm assuming the Interferon and Ribavirin are allowed since they are now FDA approved.
What specifics about the trial are you referring to? I have no idea what the details are when you go into a trial. I've been told to get a copy of the consent and that I could get more details looking at that.
I'm sure I'll be back on with lots of questions. Right now I have questions about things like labs. My WBC and platelet count are low and my Iron is elevated. I'm wondering how all of this has to do with the liver damage and what I can do to reverse any of it.
Anyway, thanks again.

[jmjm530]

I've never been in a trial so am unaware of insurance specifics. What I do know is that in most cases the trial drugs themselves are free, as well as the medical supervision. How this affects other insurance issues I don't know but have never read of a problem like this from anyone here. Still, of course check it out.

As to trial specifics, they basically should give you document stating what drugs will be used, how may arms (sub groups) and what is the difference between each sub group. Also a bunch of other stuff that might confuse you now. The important thing is to get whatever information is available about the trial before committing.

As to WBC, Platelet count and iron. The low WBC and platelet count could be related to your stage 3-4. I assume since they've done a biopsy, they also did an ultrasound. Did your doctor tell you your spleen was normal or enlarged? These are all things to discuss with your liver specialist. Also, when you say your iron is elevated -- did they run an iron stores test? That's Ferritin and TSAT in addition to serum iron. If it turns out you have too much iron a recent study suggests that phlebotomy (blood letting) may be indicated before treatment to get your iron levels down and therefore give you a better chance of a succesful treatment as high iron levels can be a factor in treatment failure. Another thing you might want to do is get down to your ideal weight before treating. Again, to give you a better chance.

Reducing your iron, getting down to a good BMI if that's a problem -- can all help your liver as well as give you a better chance of successful treatment. And as mentioned, successful treatment can stop and even regress your liver damage.

As a first time poster you should realize that most of us here are patients and not doctors.

-- Jim

[kcrandy]

welcome to the family. :O)  look forward to hearing how it all goes for you thru your tx when it is started.

i can tell you b4 va hospital did my tx i was looking into a study program too.  what i found out was that all the meds ( peg interferon & ribaviran ) would be supplied as well as any meds needed for various issues that might arise during tx.  some in here i think call them rescue drugs.  as jim says these are all things you should bring up with your doc, and i am very sure the more you ask in this group you will find many here are going thru the same things or have gone thru the same things you might go thru when you start your tx.

my thoughts and prayers are with you.   : O )

[wed1942]

Thanks so much for your words of encouragement. Right now I need them. IIt's weighing on me more than I thought it would.  I don't want to drag my friends into this all the time. Everyone is aware but when it comes to treatment time, which is going to be soon I'm sure, I just don't want to have to put them through this too. I know I'll have lots of questions the more I get into this. I can use all the info I can get.
Jim mentioned reducing my iron. Do you know what type diet they want you to be on? What things to avoid,etc.

[somuchmore]

First  advise from my doctor (10 years ago) was to make cetain any multi-vitamin I took had no iron. Most multi-vitamin for men >50 fit this bill and I would assume a women's vitamin comes without iron too.

[wed1942]

My vitamin does not have any iron in it. Thanks for the tip.

[kcrandy]

i believe jim was saying that knowing you iron count b4 starting tx is a big help.  if it is low thats probably good because liver interferes with you tx so the lower it is the better your chances of sucesseful tx is better.  i would ask the doc what iron level is and share with group you will get more info on how best to proceed from then on.  what i was told was foods that have iron in them were not as bad as say a supplement that could be concetrated with iron.

hang in there and keep us informed.

[wed1942]

Hi again!
My iron count was 201, normal being 65-165. Ferriten and Tranferrin were normal. I've been researching what foods are high in iron and guess I will try to steer clear of them. Hate that cause I just bought a bunch of soup and stuff and it has iron in it. Checked the labels. Think it's like 2%. Were you told that it is OK to eat that type stuff? I'm not taking any kind of iron supplement. I want to do whatever it takes to make the treatment work.

[kcrandy]

my doc said not to take any suppl with iron in them, but fruits and such that had natural iron in them were ok.  i would think it almost impossible to eat food that does not contain some iron in it.  to be sure i would also ask a nutritionist.

[jacksonpotter]

My Dr never said anything about iron.  In fact, I am anemic  because of the drugs so I would think you should take iron!