New here, and I have some questions

[DD9th]

I've been reading a lot of posts here, and am seeing a lot of acronyms and references that I don't know the meaning.  So I was hoping that someone could give me an idea of what they meant so that the posts make more sense to me.

Here are a couple:

UND
Seroconversion
Tx (**************?)

I'm also hearing about new drugs on the horizon (I'm wondering how far away, and how much better?)  

Currently waiting for my insurance to pre-approve the treatment, then I'll get started on it.  I'm trying to find out what to expect, (will I need to take time off of work - that sort of thing).  Interestingly enough, I saw that some folks get the shot and don't feel too ill to work until later in the week.  That sort of blows the plan I was working on (I was planning on taking the shot on Friday evening, and hoping to feel better by Monday, or Tuesday, at worst, and end up taking off 1 day a week for the duration of the treatment)

I have not started treatment yet (genotype 2b), and while the dr. said that it wasn't necessary for a biopsy, I am now inclined to go ahead and get one.    I have no idea if I have cirrhosis of the liver or not.  

I'll have to admit that I'm scared.  Really really scared.  I've probably had this for over 20 years, and of course feeling very sorry for myself.

[Rockerforlife]

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=65

[cb867]

Tx means treatment
Sx means side effectsThats about alll I know. I am also genotype 2b. I had biopsy because I was already in the hospital Having heart surgery when I found out I had it. I have probally had it for 30 yrs with very little liver damage. I was also very scared before starting the tx. I take my shot on thurs. night. I have a 3 day weekend. I have taken 4 shots and don't have any sx hardly at all. I have no flu like symptoms. I have headaches sometimes. Some days I am a little tireder than usual but that is about it. I have had no problem working at all. Most of the time I don't feel like I am on the treatment. My doc said with type 2 the doseage is not as high. Maybe thats why I feel like I do. I hope it stays like this, maybe you will be as lucky as I have been so far. Think positive. I was waiting for the worst to happen and it never did.
Good Luck

[DD9th]

Thank you both for your responses.  I have bookmarked that acronym page, and I think it will come in handy.

cb867:  You say you had a 3 day weekend, did you take the shot on a Friday, and have that day off, or did you take the Monday off?

My doctor did say that the genotype I had (2b) responds well to the treatment, and that I do not have to do the longer treatment.   I should be able to do the 24 week treatment.   I hadn't heard that it was a lower dose, but will look into it.

A friend of mine had HepC 10 years ago and said that she was horribly sick, so much so that even her eyelashes hurt.  

So this is scary, to contemplate feeling sick for 6 months.

The only symptom I have is spider angioma, which I have had for years and years and every doctor I ever asked about it told me it was just 'broken capillaries', and to do anything about it would be cosmetic, and thus not covered by my insurance.  

The only reason I found out I had HepC was because I also have Degenerative Disc Disease and have been taking a lot of ibuprophen for the pain in my leg caused by the DDD, and I was concerned about my liver.  (I found out later that Ibuprophen is harder on your kidney, but what a surprise to get the Hep C diagnosis)

I think that, above all else, makes me the most angry.  Here symptoms have been staring me in the face for ... sheesh, maybe  20 years that I think I've had this, and not one doctor suggested getting a liver panel test.  

So now, I have these spider angioma's all over my upper chest, they are even on my arms and neck now.  

Does anyone know if they actually go away after successful treatment?  

Does anyone know whether or not you definitely have cirrhosis if you have spider angioma?

[cb867]

I take the shot on thurs. We are closed on Friday. A friend of mine went through the tx and he said his shot was a full cc. Mine are only half full and I only take 4 riba pills a day I have heard some people say they take alot more. My tx is also 24 wks

[Bill1954]

Hi there, and welcome to the discussion group.

Rockerforlife has linked the list of abbreviations for you; you can also find this list in the box ‘most viewed health pages’; it’s titled ‘common HCV acronyms’ and it’s located on this page in the lower right hand side.

There are new drug currently in late phase clinical trial; the two that are closest to release are ‘Boceprevir’ and Telaprevir’; these are called Protease Inhibitor’ drugs, and will hopefully be available sometime in 2011. Trials are showing that they will increase the efficacy of treatment for genotype 1 patients from roughly 45% to 70%; as a genotype 2 patient, it’s not sure if you’ll receive much additional benefit from these meds. They will be initially used in conjunction with interferon and ribavirin; and may reduce treatment duration for GT-1 patients from 48 weeks to 24 weeks; GT-2 patients such as yourself already have a 90% chance of clearing the virus in 24 weeks.

With genotype 2, a biopsy might not be required; especially if you intend to undergo treatment regardless of disease severity. If you believe you’ll postpone treatment, a biopsy can indicate how urgent treatment is for you.

You probably don’t have cirrhosis at this point; if you did, your doctor would have picked up on this already. Patients with cirrhosis will have biochemical markers such as platelet count, albumin, bilirubin and other values that yield enough information on their own to diagnose cirrhosis.

Additionally, patients with advanced cirrhosis are not permitted to undergo treatment; interferon will make them too ill to proceed.

I’ve treated for several years and was finally successful. It can definitely be challenging, but is more of a pain in the butt than anything else. I’d personally recommend getting it over with; especially with genotype 2; the odds for success are greatly in your favor.

You can go to this website for more info on HCV:

http://janis7hepc.com/

Start by opening ‘newly diagnosed’ near the top of the page, or by clicking on ‘other HCV information’ located in the right hand margin.

Good luck, and hang in there—

Bill

[DD9th]

Thanks for the info Bill!  It eases my mind to know that I don't really need to decide whether to wait for 2011 for the new drugs.  Also that interferon is not administered to patients with advanced cirrhosis (I didn't know that).  So that is kind of a relief.

I was a daily drinker (I had cocktails after work pretty much every day, and also drank on the weekends), but when I got the first report of abnormal liver function, I quit.  Just like that.  (so I guess I'm not an alcoholic, I have thought of myself as one for years now, just because I did enjoy my cocktails daily).  

It makes me sad though.  I miss them, and feel like some kind of outcast at social events.  I'm hoping that some day, if I get rid of the hepC, I can become an occasional social drinker again.  I guess that should be the least of my worries, given some of the things I've been reading about advanced stages of this virus, and the effects on the liver.

Now I'm not sure if I should get the biopsy or not though.  At first I was going along with the doctors advice (that it probably isn't necessary), but then I thought I should get one to find out how bad it really was.  But now I'm waffling on that again.  

The liver is such a large organ, and if they get a biopsy, I'm wondering if it is a hit and miss thing, where a part of the liver might be in bad shape, but others not so bad?  

This site has been very valuable to me already.  I have seen that it is a good idea to hold off starting the treatment until you have had the medicine for a couple of weeks, so that if there is any difficulty in getting the weekly doses, you have some leeway.  

Thank you folks for making me feel welcome here.  I really do appreciate it.  This disease is not something I feel comfortable talking to co-workers, and in some cases, even some family members.  There seems to be a stigma attached to it, (at least in my mind), having to do with the limited ways you can get it. (i.e. drug use)

I've got to figure out what to tell the HR department at work when I request long weekends, if I find I need to.

Anyway, I'm rambling, thanks again. :)

Maluhia (Peace)

[Bill1954]

Yeah, I drank lots and lots of beer for many years and quit in 2003, a year before I was diagnosed with HCV. I miss it too, in a way, but it stopped working for me anyway, so it was time to quit regardless. You’ll get used to all this, eventually :o).

Scaring, or fibrosis, is typically staged 1 through 4; with stage 4 being cirrhosis. Then cirrhosis is staged again; one method is the ‘Child/Turcott/Pough score. This stages cirrhosis by A, B, and C; Child-class A cirrhosis is compensated cirrhosis, where the liver architecture has changed, but the organ continues to manufacture, synthesize, etc. Child class B and C are *decompensated* cirrhosis, also known as End Stage Live Disease. This is when the use of interferon isn’t usually allowed. While spider angioma can be a sign of cirrhosis, if you had ESLD, you’re doctor should have picked up on this already using biochemical markers, etc. Hopefully :o).

The biopsy thing is always debatable, with supporters and detractors alike. Biopsy results showing stage 3 results might make you more compliant with meds, and more driven to complete treatment if it is trying. On the other hand, there is a slight risk for any invasive procedure; and it’s an expensive resource as well. Your doctor is best qualified to help you investigate the risk-benefit ratio of biopsy.

You’ll read that treatment affects each of us to individually. I tolerated the drugs very well; both from a subjective as well as homotological standpoint. I didn’t require any ‘rescue’ drugs such as Procrit or Neupogen; and was able to function fairly well. This was a good thing; I treated for a total of 152 weeks to achieve SVR.

I urge you to read through ‘Janis and Friends’ website, and continue to read and ask questions in here as well. There are a lot of compassionate and friendly individuals in here that will help you though the treatment maze; it can be a little confusion at first :o). Request copies of all labs and procedures, and begin a medical file, if you haven’t already. This file will help you communicate more efficiently with others in here, as well as with other specialists if the need arises.

This section of the forum is set aside for discussing things that are off-topic to HCV; we have another forum here that is more focused on HCV treatment and support:

http://www.medhelp.org/forums/Hepatitis-C/show/75

You can also get there by scrolling to the top of this page and clicking on the blue link ‘hepatitis forum’; this is known as the hepatitis social forum. There is lots of crossover, but your HCV related questions might be better answered in the other one.

Take care, and stay in touch—

Bill

[IAmTheWalrus]

Many times doctors do not recommend a biopsy for genotype 2 patients because it will not influence the decision about whether to treat or not. With genotype 1 patients, the conventional wisdom has been to wait until serious liver damage is imminent before treating. This is because treatment for these patients is longer and less likely to succeed.

It is hard to say anyone is lucky to have HCV, but if you have it, it is so much better to have genotype 2 or 3 than genotype 1. The odds of success are very much greater, and the treatment length is shorter, so doctors generally recommend treatment of these patients regardless of liver condition.

I have heard that new protease inhibitor drugs (Bocepravir and Telapreir) will be available 2nd quarter of 2010. I have not seen this in writing, but my hepatologist says this is so.

I mainly I wanted to welcome you and wish you the best of luck in whatever course you pursue. Hope to hear from you further.

Brent

[DD9th]

Thanks for your good words Brent. :)

[IAmTheWalrus]

Glad to help. Good luck!