Cirrhosis & Hep C type 3

[Notmyday]

Hi forum members. I'm new to the site & hope that some of you might help enlighten me as I'm feeling pretty much alone about now. I'm 47, caucasian male, weigh around 118 kg, smoke 20 a day and 188cm. I've just found out I've got cirrohsis & about 6 months ago earlier that I have diabetes type 2 which I have under dietary control & so far so good - I've read diabetes medications are a big no no for compromised livers. I've had hcv since around 1984 I guess, making it some 25 years. I found out about the hcv around 1999 & had first treatment of rbavirin and interferon in 2000 and at that time was told after biopsy that I was a stage 2. I was a breakthrough after 48 weeks. Life went on and in 2005 I managed to get onto a Pegasys treatment (full dose - I think 800mg peginterferon and 1200mg ribavirin) at the time I weighed around 138kg. I broke through again after 12weeks and my specialist thought it best I stop to avoid any build up of immunity to the interferon therapy in case I got another chance at treatment. I tolerated both treatments pretty well. Anyway, again life went on and late last year (2008) after finding out I had type 2 diabetes (I found out as I was feeling pretty poorly - typical symptoms) my doctor noticed a low platelet count around 120 & thought I better touch base with my specialist. I did & new biopsy was ordered (more fun!). Now biobsy says cirrohsis & specialist (registrar) says lose weight (ie at least 20kg) in next three months & maybe you'll get a third treatment of peginterferon. All good & well, I think I can do the weight thing - believe me I'm motivated. What i can't work out at this stage is (and given my luck, I probably won't get the third chance & if I do I suspect I'll just breakthrough again anyway) is how much time do I have left? The registrar kind of dodged the question but said worst case scenario might be we are talking about a liver transplant in 5 years time! Does this sound about right? I've progressed from stage 2 to cirrohsis in 9 years. Is that as good as it gets or is the specialist being pessimistic? Anyway, all and any thoughts/ advice would be greatly appreciated.

[nygirl7]

NYgirl says: " I was a very tall thin woman..."
I says: "Note the *was*" "

Hardeee hardeee har hahahaha.

Red stilletto's boys.........we wear the RED stilletto's to party on for the SVRS!  Geesh just when I think you guys know everything!

[Notmyday]

I just wanted to say that this was my first post and I really didn't expect much in the way of response. I was despondent, very very respondent. In the few days that have passed I have been provided with information that I am doubtful I would ever have had access to. Today, I feel some hope. Please keep posting and thank you all.

To anyone reading this and suffering in silence, please join this forum, the knowledge, generosity and kindness found here is beyond words.

[GoofyDad]

Excellent observation. And spot on too - a gal fittingly attired in stilettos can make everything stand just a wee bit proud.

[JennyPenny]

Thanks for finding that Mike. We are all so used to saying that treatment gives the liver a rest, etc., because that was the thinking early on. Now they know that treatment in non-responders, 9including maintenance treatment is not recommended any more. I was pretty bummed when I found that out. When I think of the 100's of injections I endured and all those years of feeling like cr*p, it makes me mad. :-(

[mikesimon]

".........The clinical implications of this study are clear: Peginterferon
alfa-2a 90 µg/week is ineffective as long-term maintenance therapy for
patients with advanced liver disease who have not achieved an SVR
after previous peginterferon/ribavirin therapy and cannot be
recommended. Moreover, such therapy may be, in fact, harmful. Since
there are no therapeutic options for nonresponders other than
enrollment in clinical trials, the negative results of this study
further emphasize the unmet medical need faced by this population......."

From:  Clinical Care Options  Sept 1, 2009

[FlGuy]

NYG's change of height is not so surprising.  Remember those black stiletto heels she wrote about?  They apparently worked.

[jdwithhcv]

If we cannot laugh at our comerades, who can we laugh at?

[GoofyDad]

On camraderie and laughs, watch this:

NYgirl says: "I had no idea about a PM limit and I've PM'd my brains off sometimes"
I says: "That explains a lot"

NYgirl says: " I was a very tall thin woman..."
I says: "Note the *was*"

Har-de-har-har.... ain't this fun....  

[jdwithhcv]

This forum helped me get through treatment.  The camraderie, information and laughs were almost as helpful as the meds.  Whatever else you decide, keep reading here.  Its worth it!

[nygirl7]

Whatever you do that makes you comfortable that is what you do.  As time goes by and you get more used to the people and the circumstances and stuff if you should decide to post more, than you do.  Just know that we're all around to help any time you might need it and we sure do get what it feels like, big time. I had no idea about a PM limit and I've PM'd my brains off sometimes so I guess it means per person not how many PM's? Odd I never noticed that one - see you taught us all something already!  :)

When I came on here five years ago I had no idea in a million years how much this forum would change (and save) my life.  I had no idea as treatment started and I got weaker just how lonely I'd be sitting in my room with my remote control watching tv - I thought it was lonely before!  

My folks finally came in and moved things around so I could reach my keyboard from my bed and I'd type type type away. Somedays too weak to type but just read.  That was enough.  It was like having a bridge to other people that really literally ended up propping me up and holding my head up when I didn't think I could any more.

The days I wanted to stop and just quit and give up they wouldn't let me.  The days I needed to whine they were right there to go YES YES THIS DISEASE *****!  And then a couple minutes later somebody would say something hysterically and silly and totally immature and I'd be laughing again.

So yup.............you just do whatever it is that makes you feel better about your situation and believe me - we get it.  And that's a good thing that you can take to the bank.

[Notmyday]

As I said, I'm new to the forum and can-do-man hit it on the head, I was talking about PM's. Nygirl7 is just scary with her insight, "HepC is really really isolating and the kind of disease you just don't want to talk about". I cannot begin to tell you the negative impact this thing has had on my life and career and how much happiness it has robbed from me and the two people I have been prepared to know of my condition ( I am sure you all have had similar experiences). Even my parents are unaware as I choose to spare them the worry in their twilight years. As a matter of fact one of my biggest worries is that with the cirrohsis progressing I may not be able to shield them from the knowledge.

Even in this anonymous setting I feel uncomfortable discussing my condition. Anyway, I prefer to keep my posts, at least for the present in PM's and I hope you all understand my reticence in being too candid on the open forum. I will post the PM's when I am able. Thanks.

[FlGuy]

Ahh, PMs.  May be that's it.  I don't PM much so I never bumped into that.  Thanks

[can-do-man]

Not sure as i never have had that problem but i think shes talking about a limit on sending PM's, seems somebody said there was a limit on those per day. And i agree flguy on the amount of times one should be able to post in a day, plus sometimes a thread opening limit per person would be nice again.

can

[nygirl7]

There WAS a limit way way back years ago but that is way no longer around (just look at how many new threads some people start and you can tell easily that little fact).

Ask whatever you need to know.  That IS why we are here.  Many of us have long since finished treatment and gotten cured and we stick around just to help the new people like we were helped when we first got here.  Plus.......now we've made friends which is a tremendous benefit to this forum.

HepC is really really isolating and the kind of disease you just don't want to talk about to coworkers etc. but in here...everybody completely and totally understands.  Heck sometimes we can even really have a good laugh about it (well about ourselves and it).  It's healthy I suppose!

Post away.  The more you learn the better off your chances and the more you get to know people too!

[FlGuy]

You should not be running into any comment 'posting limits' for this forum.  (Sometimes I wish there was a per person limit, but there's not).  There are guidlines for the number of new threads that a person can open but that limit is not systemically imposed either.  Could be that you need to log in again if you close your session or shut down your computer.

[Notmyday]

Thanks to you both for the info. It is exceptional. I have exceeded the site's message limits (frustrating!) for today but will send you further messages to gain greater insight. It sounds like there are in fact possibilities here.

[nygirl7]

Notmyday

Please make sure and do as FLGuy says - right now line up the very very best hep doc that you can and add up all the pieces with him.  At this point, you do not want a regular old run of the mill doc you really want the best that you can find even if it means traveling an extra distance or going a bit out of the way (heck even a lot).

Just what is available to us in your data you NEED to make sure that you are getting even more than enough ribavirin and it looks like in the past it's not been enough.  I was a very tall thin woman and my prescribed dose was 800 but even I asked for 1,000 (and honestly took more than that because I was hyper aggressive about it). That means for my body mass index of 19 I was getting the almost the same amount as you!  That cannot be right at all.   It can lead to hemolytic anemia which is extremely "unpleasant" but it's almost a good thing because you know you are getting enough riba.  It's a blessing in disguise sort of.

it is CRUCIAL especially in the first 12 weeks that you get enough meds to get you to UND and keep you there for good!

I smoke too (yes we know we should quit but thanks right?). I was a geno 1A and also 1B and I had to treat for 72 weeks to get to SVR.  But, that was over two years ago and now I am cured.

You have to do every single thing you can to swing these odds over to your side.  It's probably not going to be pretty but by making sure you are getting enough meds and trying to drop some weight and all the things I'm sure you already know you can make the difference that you need.

Obviously the meds were working - that's a good thing.  Make sure your doctor gives you frequent sensitive PCR tests starting as early as possible but not less than at week 4 to start so you can see exactly what/when/how/why etc. that you get to UND and then continue to do everything to stay there.  Even if it means extending (i was not negative at week 12 and only had a very small count but it meant I had to extend to put my odds in my own favor).

it's all not fun but it can work.  Start with finding that best doctor you can find and if you cannot switch for some reason..........learn all the correct things yourself.  My doc was no great wiz but I learned everything I could on here and finally after a while he listened to me (was not always easy). Now today he has changed the entire way he practices hepc treatment because HE read all the latest studies and information for himself.  It is that way for a bunch of us in here. If we coudn't change well we had to do something and you can too.

Good luck to you.  ASK questions and LEARN all you can. Get copies of every test you get done so you can learn how to read them and what to ask.  it can change your life.

[Notmyday]

I have sent you each a personal thank you message and in some cases asked afew more questions. I still am unclear on how long one can go in my circumstances so all and any info/suggestions/advice is really appreciatted. Yep, I'm still freaked and g'day from OZ!

[copyman]

Because of the way you seemed to progress faster then some is why I suggested to do a maint dose. This hopefully would help to take the strain off the liver & give it a break while waiting for the new drugs. Not saying it would cure or regress the damage already done, just "borrow time" until the new drugs.
Of course there are no doctors here just opinions from people that have / had HCV. Everyone is different and what worked them might not work for you.
You should see a Hepatologist for advice and ask for expert opinion.

[FlGuy]

If it was me, I would not wait to take action.  The immediate action is not necessarily to begin treatment, but to get ready to treat fairly soon.  That would include finding an expereinced doctor who would be willing to take a very aggressive approach to treatment. Initially trying doing something about the weight and the diabetes and getting both under control. From what you say, you have had rapic progrerssion and the low platelets could be problematic later on if treatment is deferred too long.  Even if you drop weight, you have a treatment history that will, with aggressive treatment, probably require significant amount of both Peg and riba.  Based on weight, you seemed to have been underdosed for riba in the past.  And although Peg is not weight-based your history of breakthrough may be a need to kick it up a notch there too.  Don't wait, get a doc, make a plan and act like your life depended on it.

[JennyPenny]

"some good advice so far. i wanted to add that if you just do a maint dose of interferon until the PI's come out that would give your liver a much needed break.  If you get the chance to treat with the PI's (new drugs, due out in 2011) there is a possibility that your cirrhosis may regress a stage back to 3. Hang in there and good luck "

HALT C studies have shown that maintenance therapy does not stop the progression of the disease or the symptoms that come with a decompensating liver. Also because of low platelets and white and red counts, many cirrhotics take a beating with their counts fallling to dangerous levels, even on half dose interferon. I know because I was one of them.

Like othersw have said, many of us live with cirrhosis for a greatg many years. there is a lot of hope so just keep hanging in. Also, as a type 2 diabetic, I am on metformin as are many other diabetic patients with hepaititis C. Diabetes is actually more harmful to the liver than the metofrmin. Getting my diabetes under control with diet, exercise  and 500mg metformin pt my liver enzymes in the normal range and improved all my labs. My alk phos went from 135 where it had been for a couple of years down to 79. Keep a good watch on the diabetes.

[copyman]

some good advice so far. i wanted to add that if you just do a maint dose of interferon until the PI's come out that would give your liver a much needed break.  If you get the chance to treat with the PI's (new drugs, due out in 2011) there is a possibility that your cirrhosis may regress a stage back to 3. Hang in there and good luck

[newleaf09]

I have cirrhosis but I treated with a PI this year in a trial and cleared.  Keeping fingers crossed for SVR declaration in 3 mos.  I gave a great deal of thought to living with cirrhosis while in the process and read everything I could.  People can live for many many years with compensated cirrhosis.  Some of this forum's members have lived for decades with it.  It's a matter of living a super clean lifestyle, so that you limit your liver's exposure to toxins.  Cirrhotics can't process those well and can take on more damage from them.  Chemicals, over the counter drugs, alcohol, they all increase damage and can push you over into decompensation, all of the terrible symptoms like encepalopathy, ascites, etc.  Do everything you can to stay compensated (liver still able to do most of its jobs in spite of damage). Avoid aspirin and other drugs that will aggravate your low platelets.  There are some meds that are moving towards approval for use in HCV TX to boost platelet production and make it a safer ride.  

Try to stop thinking of " How long have I got" and hang in until the first wave of the protease inhibitors are approved and reach the market.  It's a rough treatment but many relapsers and, I believe, breakthrough cases have had positive responses.  If I were you, I'd spend the next year and a half getting prepared for the marathon that is re-treatment.  Watch for liver cancer, lose the weight and get the diabetes under control.   I wish you all possible luck and will be thinking of you.

[oldhepper]

Welcome. I too am a newbie to the site. My heart goes out to you and I wish I was more knowledgeable regarding your condition. The only thing I really know is that geno 3 is supposedly a fairly good HCV to have if one must have HCV as is 2b which is what I have.

I am not treating and have had HCV since 1965 and am almost 67 years old. All I can advise you to do is do a lot of research on the internet. Hopefully, others on this site will have more information for you.

Best wishes to you.