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Avatar universal

other's opinions please

I have Hep C. Geno type 1, stage 3 w fatty liver. Never overweight.
How long can stage 3 hold?
My impression is this is not that bad - correct?
Past treatment w 3 meds (over last 2-3 years).
Interferon w copegus
Albuferon w copegus
Infergin w copegus
I was told I was a "non responder" each time (but my viral loads DID respond some, to each)
Anyone similar & any info?
Thanks - not a "worrier" but Do want to know realism.
137 Responses
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250084 tn?1303307435
  At the risk of starting another debate.....as your not in tx right now.....milk thistle. Try it. It DID do a lot for me for a few mths. that I did it and had to stop 30 days before tx.

My VL while on milk thistle.....   812,000
My VL after stopping 30 days.....4,430,000

google it, it helps the liver function/process, which our livers need help! It is being recognized in the medical world more now as helpful with Hep/liver.

                                                                                        LL

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Avatar universal
My vir load as of yesterday has gone to  25, 785, 00.  Does anyone know if there is a way to get that to drop?  Two of the trtmnts did drop it when it was down in the ten million range - but only for a while.  Any input would be great.  Thanks,  V
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Avatar universal
Hey gauf, high 5 tuhya!  Maybe we will be starting at the same time, we can count down the weeks together as we go along. That would be good.

NYgirl,
yeah the last time it was weight based, but I don't know the doc thinks longer tx may be the answer, but I'm getting another opinion and may even tx at the place I get the 2nd opinion so I'll see. Starting all over again, yuk, but I shouldn't complain so many others have gone down this road over and over again.
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179856 tn?1333547362
All I know is I upped my riba pretty drastically and suffered just as drastically back from the anemia - in fact I almost didn't make it thru the first two months.

I wouldn't worry about not having side effects - if you're gonna do treatment just do treatment.  If you already tried the pegasys I'd try upping the riba and going with the Intron...why not?  You know how it went the first time, maybe this time it'd be like a miracle (although honestly I dont think it makes a difference which one but does greatly matter to get the riba correct, don't let them make you skimp...no matter what).
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144210 tn?1273088782
Hello conservative pal. I did pegasys on my 1st tox. and pegintron on my 2nd tox. My 6 mos pcr on pegasys was 250,000. My 6 mos pcr on the pegintron was 4 million!  Round 3 will be back to pegasys for me.
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Avatar universal
As far as the riba, I'm wondering if anemia early on is a good sign, as some tend to believe - saturation etc...I'm also wondering if I should change interferons tho my doc said no, stay the same (pegasys) and he leans towards longer tx should do it. But also,,,going the 48 and knowing I didn't have sx from pegasys makes me want to stay with pegaysys,but maybe I wouldn't get sx from pegintron either and the smaller molecule that the pegintron has is something that has me interested so I don't know which way I want to go. Flip a coin I guess.

I wonder if they ever let a person do half the tx time with pegasys and last half pegintron. Well I'll be going for a 2nd opinion so I'll see what this doc says and weigh it all.
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Avatar universal
I agree. Though Pegasys was a lot easier for me to tolerate I don't believe that the change from Peg-Intron was a factor. I really don't know that the extended treatment was crucial either but, at the time, I felt it gave me the best shot. Looking back on it I think that the ribavirin dose might have been the deciding factor in my response. Mike
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179856 tn?1333547362
Just goes to show how important it is to get that riba dose right and not skimp on it as much as that stinks.  More and more I am seeing how crucial the riba really and truly is, when I first started to treat it was something that I took on faith but didn't really understand.

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Avatar universal
I treated with low dose ribavirin and standard dose regular interferon for a year and didn't clear. I treated again with a higher but inadequate dose of ribavirin and standard dose of Peg-Intron for 53 weeks and cleared late and relapsed. I treated again with a higher and adequate ribavirin dose and standard dose Pegasys for 73 weeks cleared at week 12 and have been SVR since 2004. Mike
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Avatar universal
I have not seen a study about resistance one way or the other. i was wondering if anyone else had knowledge of such a study.

most everyone knows that the chance of success with retreatment is very low. in my own situation, my VL went down from 10 million to 400K at 12 weeks but then increased to 1 million so I stopped treatment at 24 weeks.

I am assuming that the virus that remained in my body was resistant at that time (3 years ago). Is the virus that is there now (or 2 or 3 years from now) resistant to interferon?

If that were the case,it might be near impossible for retreatment with peg and riba to work now and it just might inhibit the chances of future success.




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Avatar universal
You misread my post. I was not referring to resistance at all (i.e. first question) , and my understanding is the same as yours.
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Avatar universal
If the question is about resistance I have never seen a study that suggests that treatment can result in resistance. If you have seen something that suggests or concludes this could you post it for me. Thanks, Mike
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Avatar universal
Thanks for nice words. Yes, my increased doses of ribavirin (only very early in treatment) were approved by my liver specialist, as was my initial double-dosing, and the extension from 48 to 54 weeks. These are very powerful drugs and important your doctor is always onboard. Don't really have an answer to your first question, but my concern had more to do with the fact that interferon-only based treatment had failed DSCVG three times previously.

All the best,

-- Jim
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Avatar universal
First I want to thank you for pointing out that we should thank Jim and mremeet. That was very instructive. Thank you burned. Mike
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Avatar universal
First, I think we all need to thank jmjm and mrmeet for all the time they have spent on this forum helping other human beings with hepc. I think that their disagreement and  spirited but civil discussion itself was enlightening.
Back to the original question. Since DSCVG has treated 3 times already with an interferon based product, would treating again with an interferon based product reduce the chances of clearing in the future. In other words, would the virus in his body build up still more resistance to interfereon so that when another drug , (maybe teleprevir alinia or something else) becomes available and he treats with that drug plus interfereon, he will have used his interfereon opportunity already.
Any studies about how long would it take for the virus to revert to its wild form after interferon treatment?

Lastly a question for jmjm. I see where you cleared your own virus by increased doses of riba. Was this treatment approved by your hep doctor? Are the top hepdocs able to give their patiemts something more than the SOC?
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229003 tn?1193701924
yawn
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233616 tn?1312787196
wanted to address your horror story, so sorry to hear, and many similars. the thing I wonder is did you ever stop to consider that maybe the hep was destroying nerves cia the route of your bodies own interferon before tx, and then that neuropathy is a side of diebetes.
I'm convinced no one should even be on tx without monitoring that, but also, something has been causing my brain to go all white spots, and peripheral damage even before discovery or tx of the hep C. Just saying, it can all be cumulative, and yes, I've been bedridden for 5 yrs, so not a fun time.
not saying any of it lightly. But it's kinda hard to know that the virus in it's 30-40th year would not have caused all of that on it's own...because due to one dumber than dirt GP I had to take educated guesses for years to get to diagnosis with no grey cells working on her end...and by the time I did, spleen was also very enlerged cause the body fights to live....just saying....it may be that in early stages one bounces back, but for most we the age where that's not so easy and more damage than we realize has already been done.
Are you hopefully controling blood sugars and reading up on neuropathy, the sudden onset makes me wonder why and if you've had brain scans regarding it all.
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233616 tn?1312787196
4CGD-  of course I did start the whole idea.......grin...thanks for the comp. though, luvu2
still, it coulda been dorothy's slippers I was referrenceing.......grin...
oh to heck with it....who doesn't say "sig heil" when their life depends on it...and this coming from a jew.......well now pilgrim...how does ya spell dilemnas?



on a more serious note: this is the first time in 10 years any forum has ever shocked me.
with all due respect to PSP.....is that what you are taking dude????? elephant tranquilizer ah hence the handle?

how do any in here help the many while not jeopardizing the infomationally challenged anyway!?!
or, now to disagree with you is to be a puppet.....get real....it's almost like,
I can't imagine any one piece of advice, doctor or otherwise, being the sole source of anyone's treatment choices.
Not in a day and age when a plethora of opinions is at the fingertips.

i've only been in here for a short time, read endlessly, never saw much of anything that wasn't well thought out, never saw but one Lamo still hugging his bottle, and it was't Jim.

still we do live in an age where some will spend more time deciding which latte to buy than what chemo therapy is best. rolleyes....Maybe that's not you, maybe when the verdict was still out on the efficacy your stage and circumstances made you want to wait. Or maybe you just freaked, it's been known to happen!!!

I think fear is a very compelling emotion, and it's one every person that ever came in here and tried to face this disease has had to deal with. we go away, we cry, we come back and we learn more.
that's what it means to face life head on....to not let fear paralyize us.
Sometimes, we don't win those battles, sometimes we run for cover....we saw another guy shot and bleeding...that's what war's do, and like it or not we are in one.
but that doesn't mean the war is over, you still have your own gun, your own mind, and because someone else took some metal doesn't mean you will.

So again, with all due respect cause it's never easy for any of us, but I just can't imagine that anyone can blame one persons examples for their own decison, or fear, or lack of voracity to search out a subject.
Besides which no mitigating circumstances of other life challenged were divulged in the accusayion, like family/finance/etc all of which play in whether we acknowledge that outloud or not.... and where was your actual medical advice????

it almost sounds like "anything wrong in my life is now the fault of one else".
that may not be tthe way you ment it, but as you can see by reactions a lot of people thought you were going there. I hope for your sake we're wrong about this.
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Avatar universal
I wrote here to try to get input from numerous people with various treatment experiences that might offer different points of view.  All views are read and then weighed as to pertaining to my situation.

Quite frankly, I am very surprised with all the back & forth "squabbling & bickering"!  Everyone is entitled to post their trtmnt & reactions, etc - I believe "it's ok" to do that ... doesnt have to be The Only View; just another one.

Supposedly we are all fighting Hep C, so why not agree to allow others their input without attacking each other ... then that person feels the need to "retaliate" in writing; and on, and on, and on?

Personally, I read them all, looking for possibilities and would appreciate if everyone could kinda not take thins as a personal affront from another person's thoughts.  I believe we are all adults fighting similar wars.  On the 7th I am being flown, to NC, by Angelflight, to be seen by Dr Keyur Patel at Duke for the Fibroscan / Liver slides evaluation - I never would have known anything about this if it had not been mentioned by someone on this forum.  Thgank You, whomever you are.  Night to all.
Vincent
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233616 tn?1312787196
well, been accused of lots of things, but never nazi before....does someone miss their brewskys???

chuckle, well so be it,

I guess perspective is everything, attend at the death bed of a couple folks who went from this, and you are never quite the same.

for the record, I never got the idea from anyone "not" to treat at stage 3 or 4....

It's hard to know exactly how to word things anyway, but's it's good that each person has their own voice, some calm and steady generals, some more sargents in yer face private!!
thank God there are even people willing to take the time, however apt/funny or not/informed they may be or not.
It's all acts of love, or attempts on some level.

I guess when people share their symptoms we all presume a newbie will either have the intelligence to read more than one response, horror story, or explaination before reaching conclusions one way or the other because there's way too much at stake for that knee jerk of a response.

Something tells me that most incapable of processing would not be seeking out this kind of forum for answers much anyway...(except for the occasional jerk off artist who breaks the monotony of disease dialouge with his comin' on the bobbies tales....at least there's that...)

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106666 tn?1254190911
Posted by JimJim

PSP: beware of a wolf in a sheep skin is my last coment on this subject -
--------------------------------------------------------
Are you referring to the fact that this is your THIRD screen name on Med Help, because Med Help booted you off before for similar ad hominem attacks? And don't try the "I was defending you" bit because the reason you got thrown off the first time was for mouthing off to administration in a very public manner.


Boy does Jim have this Chick down pat. Everywhere she goes with that big mouth of hers, can't help but get her in trouble. You need to take some Chill Pills Lady!! Veggie doesn't have to be on treatment to have a tantrum. She is like that on the Natch. LMAO I've known this broad for years now and she really does have some serious mental issues. So for the ones who do not already know, beware!!

Oh, and Veggie apologize to Jim? or anyone for that matter? Don't hold your breath.

EarthMan

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Avatar universal
Wouldnt be much point to this forum if we all agreed with each other all the time.
Part of joy of participateing is that it makes you think.
Its a bit of a pity that the Alcohol threads get a little toooo interesting sometimes.
But at least no can say there isnt any passion.
CS
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Avatar universal
Your knowledge of international Politics is very good. Theres an election happening in Aust.
CS
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229003 tn?1193701924
:)

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