New to all this HELP ME!! :)

[Nurse_Deby]

My husband is just begginning treatment for his hep c.  so far I am negative. Is it possible that I have Hep C and it is just undetectable right now? I want to help  my husband in every way.  I do not force him to work I work full-time and support the both of us.  We are being sent to see a specialist in a couple of weeks. So far all we have been told is that his liver is high and a biopsy will most likely be necessary. I've been researching and want to know anyone's opinion on how Pegylated interferon works.  Any information you can give me to help me understand the different stages and what not i would GREATLY appreciate it. Thank you so much.

[mindylu]

I have hep c and probably have for at least 20 yrs. My viral load is 289,000. I'm off to the liver doc. Anybody know anything about the viral load?

[mindylu]

I am itching all over in the daytime. I have hep c. Is anyone else?

[Dweav]

Mindylu, Looking back I think the first signs of my Hep C was 1985 I didn

[mindylu]

I have hep c, dianosed 12 years ago. I have had 2 biospy's one 15 months ago and one 5 yrs. ago. My liver was fine. I have not stopped drinking. I consume 2 glasses of wine per day (red)- i have tried to stop to no avail. Guess i'm an alcoholic... Could my liver be severly damaged in that time?

[cquest]

It's worse when they are grown cause you don't have any control...I talked to her yeserday and she is feeling much better since she decided to partially unpack the wound, says it was 'tight'...see?...no control...grrr...oh well, the apple doesn't fall far from the tree they tell me...she is the one that is the most like me...ever since she was about 2, she would put her hand on her hip, stick her leg out and stand there defiantly...my friends would just look at her and laugh and say 'she looks just like you ,Cin' I have 3 kids 31, 30 and 29, all by the time I was 23...crazy? yep, crazy like a fox...I wanted to be 40 and free and it worked! I could never have done it now...don't have the energy...
Cin

[v eggie dip]

ahhhhhhhhh you must of been absolutely beside yourself...That's awful...I know exactly what you mean about no matter how old they are they are still your babies...My daughter is 34 years old (I had her when I was 10 hehe) and a couple months ago she had to have a colonscopy, they found blood in a ocult sample...I was terrified for her...Turns out she has colitis and iy can be controlled with meds, but it sure gave me a scare and I would of traded places with her in a second if I could...

Hope your baby gets well real fast

*hugs from the dip*

[friole]

Teum
Sounds like the surgery may have been the culprit.  I really think had you been infected since 1995 that it would show up in those donor screens.  Thank god they have them now.  It frightens me to think how many people I probably infected.

As far as sides - it is funny that you addressed to Cougar and me because we are almost opposite extremes.  I think he started about 2 weeks before me and has had a rugged time all through.  I am skating - some very tired days, but mostly going on as normal.  I had an extremely physically active 3 days - Fri Sat - and Sun - and am amazed I am still sitting up typing this at 11:30 Sunday night. I have felt very good all 3 days - in fact I think the busier i am the less I notice how I feel.  I fretted over the sides (sx) tremendously before treatment (tx).

cquest
Yikes - sounds like a brown recluse.  I am sorry for your daughter and hope she recovers.

[cquest]

First they said Brown Recluse but I know a nurse & his daughter was bitten by one and said it didn't look the same, his daughter almost lost her foot...the skin ulcerated so badly, she spent a week in the hospital! The back of my daughters whole calf was swollen and there is now a dime sized hole with surgical packing sticking out like a wick to drain the ooze...so pleasant...thank God she is an adult at least, it could have been close to deadly on a little kid. You know your kids are your kids forever, no matter how old, she was still my baby laying on that table being tortured by the doctor when he drained it...she was sucking her thumb and crying like she did when she was little and had her blankey...awww, poor thing!
Cin

[Pirategold]

I had a very debilitating painful infection in the crease of my nose and nothing helped until Rhinocort!  It did wonders immediately.

Pirategold

[v eggie dip]

HI Cin, there you are!  I was wondering about you...That's awful about your daughter bitten by a spider!  Ouchies for sure...And sounds like the walls are coming down on you too!  Poor baby....

I had my biopsy and will get the results on the 18th hopefully...It really started to cool off here, I have the heat on today, which is strange for me because for a year I have been "thermally challenged" if you know what I mean *smile*

Hope this week will be better for you and your daughter..

Beth

[teum]

Wow! I've been reading more about this C thing, and it looks like the side effects of the treatments are worse than the symtoms! In my case anyway... Sounds like I'm going to feel worse than when I was drinking. NOW, I'm getting nervous!

[teum]

There are only two significant events in my entire life that I can think of that could be associated with my infection. One was before I was diagnosed and still a blood donor, and the other just prior to my HCV diagnosis; The first event was around 1995 when I was dating this particular woman.  I rember one night we were drinking together, she fell and busted her elbow. There was a lot of blood, and I cleaned it up for her and took her to the emergency room to get stitches. Did I mention there was a lot of blood? Not long into our relationship, I discovered she was shooting up as well as sleeping with half of the men in town. After I wised up and we broke up, I wondered if I may have caught something from her... but, like I said earlier, I was a doner and I didn't get any notices that my blood was contaminated, so I soon quit worrying and continued to donate blood for years after that. The second significant event was my surgery for sleep apnea in May of 2004. They took out my tonsils and a lot of other stuff. I donated blood only once after that, around September I believe, and soon got a notice from Red Cross that I could no longer donate. As far as I know, I didn't get a blood transfusion during the surgery, but, judging from the significant recovery from my symtoms so soon after I quit drinking, I don't think I could have been infected since 1995. So, from all indications, it seems that my infection was somehow associated with the surgery.

I am recovering very well from the biopsy yesterday. So good in fact, that I've been out all day with my brother who came to visit while I recover. We ran out of jokes and I just couldn't sit and watch another minute of CNN, so I popped a pain pill and hopped into the car and we went to the zoo.

By the way, I had a visit to the emergency room a couple of weeks ago with abdominal pain and they found a pollip on my gallbladder. So, the Dr. took that out too while he was at it. I will let you know my biopsy results when I hear from it in a few days.  

Thanks for your interest... It's good to have someone to talk to.

teum

[cquest]

The woman's husband just started tx so nobody gets pregnant during tx and for 6 months after because of the meds being so deadly to a baby. A man on tx can cause birth defects or death in his baby...forget about the hepc problem...I'm talking about the dangers of the meds....But the hepc thing would always be in the back of my mind no matter what anybody says about modes of transmit...

Sorry it took me so long to read/respond to your post but I have been busy with my daughter who was bitten by a spider, very nasty bite the poor thing has been out of comission for 1 1/2 weeks. Plus even though I supposedly have mild liver damage, I still have symptoms and one being lots of infections...so I have been on antibiotics for a female problem, then I got a fever blister, then I must have eaten something hot because the roof of my mouth is sore from one of those blisters bursting (other people get these too I hope), my tooth that was crowned now needs a root canal (what was the point of going to the dentist if he didn't do the root canal BEFORE he crowned the tooth?) and the lymph node right under that tooth is swolen, then to top it off, I have one of those invisible painful pimples right in the crease of my nose, ouch! ...I am suffering a great deal of pain and I blame the hepc for allowing my body to be so weakened...
Cin

[cougareyes]

When I agreed to start treatment, my doctor warned me I would probably start feeling worse before I got better. I'm on the team that got hit pretty hard by the side effects. But figure it this way 1 year for the rest of my life. Got to give it that for a better quality of life.
If you make the decision to treat now, you'll never know until you give it a shot. Some of us feel better, some of us feel really bad; but most of fall kind of in the middle. Peace

[GoofyDad]

Thanks for that post, Kathy. I've been developing into an interested consumer of the RIBA myself lately. A good question you pose about spiking riba levels and anemia. As you might expect, my interest in anemia is inversely following my hemoglobin counts. In other words, it's rising like a fish out of water!

In chart 5, I've been studying that spike at (dagnabbit I lost the article) 4 weeks. Whassup with that? Right at the end of dosing. Any ideas? I also wonder whether that chart represents one patient, I didn't notice.

I happened to speak with my nurse on this subject today. I said that my feeling was better to wait and take the riba an hour late with a good meal than to down it on the fly with a quick bite. She agreed emphatically. Now that's not alot to go on, but I toss it out as another data point. I'll try to talk to her more next week... she may have been speaking more about tolerating the nausea I've had.

I have been a little sloppy as to when I take the riba, varying by as much as a couple hours, but I do try to follow a late dose with a late dose, or an early with an early. I'm going to try to be better on that based on your post. So thanks. I do always get about 500 balanced cals down in advance of the RIBA, so I think that tends to smooth things out some.  

[cougareyes]

I was making myself sick with drinking, and quit almost 2 years ago. But I still keep feeling bad; lack of appetite, diarrhea, confusion and disorientation(encepthalophy), exhaustion, total joint and body aches, frequent on and off low grade fever. Finally went to the doctor and found out I had HCV, my biopsy result came back stage 3.
These were all symptoms of compromised liver function and HCV, I'm in week 14 of treatment, virus has been undetectable since 12 wk.  Good Luck To You

[friole]

I find your case most interesting, maybe because I too was a blood donor. I am thinking that your high enzyme levels must have been from drinking - maybe fatty liver - and not hep C.  I say this because since about 1993 they have had a test to determine if a donor's blood is infected with hep C.  In fact it was in 1993 I got a letter from the blood bank that I had hep C antibodies and my blood was unacceptable.

So perhaps your infection with hep C is recent.  Can you think of any possible way you could have become infected?  In any event, the biopsy report will tell you a lot.  Please do post the results in the forum and I hope you are healing well.  Take it easy.

Also, can you post your viral load and genotype.
Thanks,
kathy

[friole]

Jim -- ha ha - you make riba sound like beladonna -- take enough to get high but not to crock! Find the magic amount.  I have written down Karin Lindahl's name and will definitely look for the article on anemia and plasma riba levels. The abstracts leave me hanging, but so far I have been to cheap to buy any articles.   Wish I could understand medical lingo better, but I push through it as best I can. (you would not believe how long I spent trying to figure out what asymptote meant (Calculus was the end of my math career in college!)) You also answered another question I had - I was wondering about a test to determine the plasma level - and you said there was not one, at least in the states.  

Goog -- Yea, I have been trying to figure out the significance of that spike on figure 5 at the end of the 4 week period too.  All I can figure is that that is the spike of the final dose in the 4 week period. Maybe they just didn't show the spikes of all the doses leading up to that dose.  Then the chart shows that it takes a total of 70 days to leave the system.

Now, since I have your attention -- Goof - please explain figure 4 to me.  (Hey, if we keep up this brain stimulation, they say we won't get alzheimers).

Well, fello riba nerds, I have a busy day today and probably won't be able to get back on the net until tomorrow.  Adios
Kathy

[jmjm530]

One point I want to amplify on and then I'll be done on the subject until my Hgb gets above 13  :)

Regarding your suggestion that I space my dose 12-hours apart...
I'm not sure if the suggestion was academic, in terms of SVR or in terms of my current side effects or a combination.

"Academic" I think I've covered except to add that the 80/80 rule, also seems consistent with plasma riba levels as opposed to spikes. The long half life of riba has been established in many studies.

In terms of SVR, I was fortunate to have had almost a two-log drop at week 1 and to be non-detectible at week 6. So on a very personal basis I feel comfortable that enough riba entering my system and therefore no reason to change what appears to be a formula for that's working for me.

As far as my current side effects (anemia) is concerned, yes, of course there's a direct association between it and the riba, but that's really the point.

Lindhal again did a study showing a direct relationship between the degree of anemia and plama riba levels which she then linked to SVR. So in other words, anemia is not an entirely bad sign, in fact one could argue (taking Procrit  out of the equation) that the ABSENCE of anemia is a bad sign because it may indicate that the individual is not taking enough of a therapeutic dose. Remember everyone in the Sweedish study was highly anemic with two participants requiring two transfusions each.

Ideally (my opinion/theory here so no studies :)) in the absence of special plasma riba testing not available here, you would slowly increase your riba dose to absolute tolerance levels while taking a maxium dose of Procrit with the aim of raising your plasma riba level to what Lindhal considers the optimum therapeutic dose. I cannot emphasize enough how dangerous this approach potentially can be and should never be undertaken unless under the guidance and blessing of a doctor who understands the risks and is willing to work with and support you on this.

-- Jim

[jmjm530]

I'm gratified to see you've developed a healthy obsession with ribavirn. I only wish the medical community in this country was as obsessed, but with sexier drugs hopefully around the corner, my feeling is that is where they prefer to put their apples.

The questions and challenges you raise are good but as no studies exist in regard to the clinical signficance of dose spacing and food composition absorption, we will have to draw our own conclusions -- or a better word might be "theories".

Here is a quick reference to the study I referred to. It does reference "high-fat" meal and even breaks it down to calories of fat. Note also, the converse, where the bioavailibility is decreased when taken with antacids. http://www.rxlist.com/cgi/generic2/rebetol_cp.htm
I can't comment any more on the "spike" theory you put forth other than to say it has a certain sense to it. However -- and it's a big however -- if you read all the Sweedish studies, what you'll find is that SVR appears to be linked to plasma riba levels not plasma riba spikes.

I can't share the name of the researcher who mentioned it wasn't important how you spread out the does since it was an email conversation and not a published report. So except the anecdotal refereces I give (and others) do in that context.

But if you do want to research this more, I suggest you do a search for Lindahl, Karin, a leading ribavirin researcher in Sweeden. Her team not only published the HDR paper that got all the press but has been doing riba research for years. In addition to the big paper last year on 90 percent SVR, you might find  interesting her papers on the association between anemia and plasma riba levels and the paper on riba dosing for individual with impaired renal functions. You will either have to go to a medical library or perhaps pay on line for these unless you want to settle for the abstracts. I have them on my hard disk somewhere but this isn't a good time for me to hunt around. Anyway, and I mean it in the best sense, the extra research effort on your own part will do you good as you may turn up other things. I know the day in the med library helped me a lot.

As I've said before, I believe the effect of ribavirin dosing on SVR is still grossly underestimated in this country, even with more recent papers showing how important it is in the first 12 weeks. And as we move toward Protease Inhibitors in the future, I think even less effort will swing it's way. The other reason of course is that it's such a toxic drug and most doctors (and patients) are dreaming of the day when riba won't be part of tx, as opposed to the day when people will be taking more. :)

This is the best I can do for you now as my own personal riba has left my gray matter a little short so hopefully, I've given you some leads that will prove useful and help you draw your own conclusions. My only suggestion is to be careful how you analyze very raw data such as shown in some charts unless you have a science background. Personally, I'm always respectful of my own scientific limitations and try and cross check any data with commentary from respected authortites.

-- Jim

[teum]

OOPS! I think I just butted into someone else's question. Please excuse me. Discussion boards are new to me too...

[teum]

Hello everyone! I was recently diagnosed to have HCV-1.
I just had my biopsy yesterday. (ouch!) I'm glad I found this site!

Several years ago, I had a physical exam and discovered that I had an abnormally high liver enzyme count. I confessed to the Dr. that I was a heavy drinker and he advised me to lay off the sauce. Prior to this, and until a few months ago I was also a blood doner. I continued to donate blood (and drink) long after that Dr. visit. Until a few months ago when I was diagnosed with HCV. I have not inbibed since.(talk about motivation!)I had been feeling really bad, to the point of not being able to function. I was extreemly fatigued. I couldn

[jmjm530]

The first sentence of the last post should have read...

If you do find my original posts, I think you'll find I was clear that the dosing reference was NOT part the drug companies materials.

[friole]

I am glad you are able to post some today.  You certainly have been instrumental in getting info out to a lot of people here and I thank you for it.  I wonder if Mike might be right about reducing the Riba, however.  You are clear now and it would seem that it would not hurt you to reduce it a bit.  Am I remembering wrong, or did you say at one point you bumped your riba to 2000?

Also, I think you should reconsider taking your riba as close to 12 hours apart as possible.  I know that is not what you prescribe, but I am very sceptical of your insistence that you can take your riba 3 hours apart as long as you take it with fat. Your reasoning is the half life of Riba is so long.   Awhile back you posted a sight to support your position - it was from Shering Plough, I believe.  I have read it many times, and find nothing on that sight to support the taking of all your riba at once or within 3 hours. I also found the article on which the one you posted was based with a lot more detail  Unfortunately I have to look for it and will post the address when I find it.  

Like you, I am developing a riba-obsession. I really want to understand how it works and if it matters when you take it.  For now I think it best to listen to the manufacturers, and take the doses as they say.

Think about it Jim --- what if it would make a difference.  If I am not eating anything I just eat a few bites of yogurt with my riba - but always, as clost to 12 hours apart as i can get.
Kathy