LIZE, Anyone post tx for atleast 2 years - are you out there?

[cata100]

Good Morning everyone, interested in hearing from people who are atleast 2 years post interferon treatment. I've spent quite a bit of time reading about folks that have completed their treatments 6-12 months ago and was wondering if any of you that completed treatment 2 years ago or more can comment on how you are feeling today, what you have gone through, or any additional info. you are comfortable with sharing.  Thank you very much.

[cuteus]

It just became two yrs for me, on Nov 8th, full doses EOT, then continued at half peg for two more wks, for no other reason than I had plenty of leftovers and was afraid to let go of my security blankie.  
tx was no cake walk, but I did eat a lot of cake without gaining wt during that time.

I am one of the 1/3 group who states that they are the same post tx as pre tx, pretty much.  That does not mean that I have a ton of energy and am happy as a clam (whatever that means), it means that I am no more achy, fatigued and irritable than before tx.

[jmjm530]

Don't want to start a disagrement here, just some thoughts for discussion...

So let's assume, for discussions sake that a large percent of SVRs feel no better, no worse after treatment compared to before. (Of course many say they feel worse and a few say they feel better, but we're leaving them out of it for now.)

OK. If this grouping of folks feel no better or no worse, then where does the whole subject of extrahepatic symptons that you and others often talk about fit in?

Logically, if one feels no better or no worse after tx, then I can only think of three conclusions: (1) Indeed there were no extrahepatic symptons to begin with; or (2)The virus is still doing damage, i.e. persistent virus or let's call it the DD syndrome :); or (3) Whatever damage was done by the virus was done and is not reparable.

I don't think it #3, and I believe you have dismissed #2 in part, so that sort of leaves #1?

Welcome any thoughts from you or anyone on this.

Be well,

-- Jim

[mblessed]

My sis-n-law has been svr for 6 years she has no sx now and says she feels better than pre tx (she did the tx nearly 2 1/2 years. so not all stories are bad. i'm hoping for a good one.

[mblessed]

p.s she does take synthroid everyday

[cuteus]

oh dear! why must you?  
why not no. 3?  that is what I think could happen.  look at califia, the fact that they did not dx a b12 deficiency for months might have contributed to the symptoms of neuropathy becoming irreversible.  why not our natural interferon at work for decades?  of course I don't want to think DD syndrome (kidding! I don't dismiss it athogether but won't believe it until they do PCR on my joint fluids or ligaments and come back pos). it leaves no 3 for me, I do believe in extrahepatic conditions, because I did not feel these things after I was dx with hep c, it was the suffering from these things that brought me to hep c dx.  I believe that yrs of untreated infections can cause alterations at the cellular level that might take yrs to overcome or might be irreversible.  My theory. call it the c syndrome.
If you read the theory behind reactive arthritis, you will see that this MD, believes that if it goes untreated and the chronic infection is allowed to continue, that the damage could be permanent.
  love speculation, once things get corroborated we are going to be bored and might have to start something to keep us busy.  the brain barrier issue kept us busy a long time a few yrs back...
stay well

[sfbaygirl]

Is DD Doubledose, b/c he talks about his families symtoms? I would tend to agree with this and/or Cuteus about these extrahepatic conditions. I'm not off tx yet...just my two cents.

[jmjm530]

Cut: oh dear! why must you?
---------------------------
OK. Fine. Let's disagree. Why should this day be any different from any other :)

The reason I'm discounting #3 is that you would think that at least *some* "extrahepatic" symptons would disappear (if the existed) once the virus leaves the body. For example, we do not for a fact that in a certain number of people the liver begins to heal and regenerate with SVR. So, why then do such a minority feel better after tx? And why does such a majority either feel worse or about the same? Again, I would think we would be hearing more about this and that sympton disappearing after treatment if "this and that" sympton indeed was extrahepatic. Of course, some have said they feel better after treatment, but the vast majority -- like yourself, like myself -- either say they feel about the same as pre-tx or they say they feel worse.

Bottom line is that I really don't know, but this has been my thought process. Believe me, no one would be happier than myself if I could attribute some of my imperfections :) to extrahepatic symptons, but then shouldn't some of them disappear? And, if not, then why the h*ll are we treating if we have little or no liver damage? Where is the benefit if our histology is OK and we watch it?

Be well.

-- Jim

[jmjm530]

There is a school of thought that the liver has to get REALLY bad before we start to get symptons. Wish I had the answers here. Wish I felt like a "new" person now that the virus is gone. That said, I'll be more than happy to feel like the "old" person I was before I started treatment. Actually, almost there now.

Be well.

-- KJim

[jmjm530]

Thanks for the encouragement, but I'm approaching my pre-tx levels already. I was talking about something a little different.

What I'm saying is that many of us feel no better or no worse after treatment. That's not necessarily a negative -- overall I felt pretty good prior to treating -- but it does raise the question about whether extrahepatic issues really exist to the extent some say they do.

In other words, if extrahepatic issues existed, wouldn't the majority of us feel much better after SVR -- not compared to how we felt on tx -- but compared to how we felt before?

I know you have said you feel better, but the majority report differently --  like Cuteus for example, who states she feels about the same.

So, this begs the question where is the carrot in tx for those with little or no liver damage? We know how the tx drugs can mess us up , but where is the carrot? My carrot as a stage 3 was that hopefully I've stopped the advance of fibrosis toward cirrhosis. But where is the carrot for a stage 0, or a stage 1, etc. I don't see any. OK. OK, so the virus is gone, but is that technical reward enough to risk X months on two very troubling drugs -- peg and riba?

-- Jim

[sfbaygirl]

I don't agree with that school of thought. Many people have symptoms before tx with little damage. I sure hope it's true. I had many symptoms like low platelets, low basil temp, achy, tired, horrible skin stuff. Most of these went away on tx, except the achy and tired. Of course I have developed a few more symptoms along the way, but I was surprised how many things improved on tx.

[Myown]

hi,
Jim,,you ask where's the carrot? and Chevy, you say if 0-1 you'd wait. Ok. Just a few questions/thoughts I have and I'd appreciate your thoughts/opinions..

Carrot...not getting low grade lymphoma?, which they claim is a possibility from carrying this virus? But then again who know if the current meds or even future med can cause a problem with cancers. So, i do understand what your saying, but it's almost like the old game show,"lets make a deal," we don't know whats behind the door we choose, to tx or not to tx.

When you guys say "wait and watch," rather than take current tx. Are you referring to just watching ast,alt levels and if they rise? Would that be the only thing you would be watching? What would be ast/alt range that would make you say.."okay, time to tx." My levels are usually normal (in 30's) and 40's and 60's, if they go high.

Just curious. Also when I had my cat scan a few months ago, it said I had a too small to characterize hypoattenuating lesion in the lateral segment of the left lobe of the liver. An additional lesion is present in the lateral segmant of the left lobe of the liver measuring aprox blah blah blah...

the doctor didn't think anything about it,says I could have been born with it. Have you guys had cat scans? Any lesions?

It also says I have small upper abdominal nodes which may be reactive in nature. What the heck does that mean? The doctor never mentioned it. Saw that after i pulled my labs. She only mentioned the cyst and said no big deal. But it does say a follow up in 6 months is suggested. No big deal then why do I need a follow up with another scan? Ya know what kills me,,,ya start off not having cancer and then because we have to get scans the rest of our lives,,,ya know that's not good. But gotta do, what we gotta do, I guess.

Any feed back for me is appreciated.

[desrt]

I've been undetected for over 3.5 years post-tx. Never had any symptoms pre-tx that I attributed to hep. My geno 3e and I co-existed pretty well for 30 years, probably because I was never much of a drinker. Alcohol has always made me queasy, maybe 'cause I had hep A when I was 5. I did abuse just about anything and everything else for about half my adult/teen years. The problems I started treating one year after tx (insomnia, hypertension, pain in hands) are all stuff that runs in my family and/or were present to a slight degree pre-tx. I suspect that IFN/riba may have aggravated these, but have no regrets about treating. At 50 y.o., I feel I have good QOL, which would probably be excellent, if I chose to exercise more and eat healthier. As always, most of my problems are 'self-inflicted'.

[returntosender]

Most people with 2 years post tx SVR should be out enjoying their life not thinking for a minute about the virus - a distant memory.  That will be me I hope.  We are not hearing from them because they have put it behind them.  

I cant believe that anyone can say that there is no difference between pre and post tx. Even when I first did combo tx 6 years ago I had significant changes between pre and post tx. With all the subtle things that hepc changes such as sight, sound, taste, smell, touch how can it not be better when its gone?  Pre tx, I had to stop wearing cologne.  I couldnt even get near a cigarette and I loooved cigs.  Everything made my stomach upset.  I always had problems with my ears and couldnt taste things at all.  I knew all of that was from hepc.  I dont think there is a single element of our physical lives that this illness doesnt affect.  And I believe it affects our motivation excitement, commitment, acceptance, concern, patience etc.  

I am convinced however that we have this virus so long that it becomes one with us - an invisible coat.  Take the coat off and normal now feels like SICK!  But its backwards - we were used to the sickness and now normal health FEELS foreign!  I dont think we should compare ourselves to the way we were before tx, we should be in the PEOPLE WHO HAVE NOTHING WRONG WITH THEM forum - like my wife and partner and colleagues and buddies and kids who are always miserable and tired and itchy and grumpy and sick from some dam! thing or another.  I am 55 and drank ginger brandy and beer and got in fights and fell off ladders and shot drugs and crashed cars and ate beer glasses for godsakes.  How can I expect to feel good?  I am happy to be able to take a trip without bringing TUCKS in my glove compartment. I am happy to be able to eat tomatoe sauce again. I am happy that some bug isnt eating me alive.  I expect to feel like ****, everything else is extra.  Life has come to this. The difference between me and the normals is that I am greatful to feel just plain lousy.  LOL

[jmjm530]

Everyone is different but in my case, as in many, I had the virus for over 35 years with no apparent side effects, I think. I say, "I think" because who knows what causes this and that over all those years, but no serious, serious health problems.

Watch and Wait. First, you don't do it alone. Find yourself a good liver specialist to work with. They will watch your enzymes, VL and the physical condition of your liver. The latter IMO is by far the most important. I gave some comments on this in original "Thanks Hepatitisresarcher" thread.

Your doctor will hopefully then watch your liver with periodic ultrasounds and some form of "biopsy" be it needle biopsy, Fibroscan "biopsy" or blood marker "biopsy" like Fibrosure. Or perhaps all three. If you don't think he is watching close enough, then you can seek out these tests with perhaps another doctor. My doc, for example, didn't offer Fibroscan because he didn't have one. I read about it, made some calls, got an appointment, and got it done. My treating doc wasn't involved. When I told him what I was doing he thought it was a great idea.

The other part of the "watch" is the watch for the newer drugs. Within the next year SVR data will be flowing in from a number of trials, including VX-950. That also should be watched.

-- Jim

[cuteus]

so, maybe we need a complete list of pre tx things that went away with tx, not sure if they are related to svr but here it goes, nothing dramatic.  The last yrs before dx, I found that my fingernails have stopped growing, or grew very slowly and weakly.  Post tx, I finally have fingernails again.  Pre tx, lack of enjoyment for life, a feeling of gloom.  Remember, this is before I knew of hcv.  Post tx, some depression, but nothing like before tx.  Things where the joints were affected might be a different issue.  It looks as if ligaments, tendons, discs and the like, do not heal without intervention.  If vertebral discs somehow weakened due to my immune system or hcv, and herniated, it is unlikely that they will recover on their own.  Right now, I have a tear in a knee ligament. The ortho won't intervene unless my knee starts buckling.  It sounds as if it won't heal and if things get worse, he will intervene surgically.  Maybe these tissues do not bounce back as well from injury or disease?  

While on tx, the carpal tunnel syndrome was horrific, worse than pre tx.  It got even worse after tx, but returned to pre tx level many months later.  So, that could either be a plus or nothing at all if thinking in terms of it not getting better when compared to pre tx. Although better than while on tx.
If pre tx symptoms were not incapacitating and you return to that level, then you are still functional, even though QOL did not dramatically improve.  Changes can be subtle, as with the nails or dramatic, as with improved disposition.
Another thing that was present pre tx, that did not return post tx, was some odd digestive problems.  I guess I don't mention these things because my main reason for tx was the aches and pains, and those remained.  But those other things left.  So, I am better post tx because a few minor things left.  I am the same as pre tx because the most painful things remained.
Should I recategorized myself?

[TatorToT]

Chev, JmJm, & Rev....
LoL... I GOTTA ASK THIS...????

Over the past few days I have read more than once that 0 to 1's might ought to wait, or are damn fools for doing current available TX now... Well I guess I'm a damn fool & I have no regrets... so I have to disagree with that...& don't understand this thought process at all..???

I did 100+ weeks of tx, (due to relapse wound up doing two rounds), I had little to no significant liver damage, wasn't even mild to moderate, treatment was optional both times.... was it worth it... HELL YES... would I do it again should I relapse again... You Betcha...

In my opinion telling people to watch & wait is just plain wrong... it's psycologically important to treat for some... I mean why WAIT for the damage before you treat... plus who knows when the dang viris is gonna up & decide to just get a whem & accelerate... who wants to chance that? None of us in here are getting any younger either!

I mean the whole time we are on treatment our livers are regenerating... many even reverse a stage while on treatment... so if you are treating with little to no damage... think of the break your liver is getting, & by the time the TX is over, then surely you have what would amount to a newborn liver????

So Why NOT TX???
I mean NOT Everyone has excruciating sx's... there is no way of predicting that, it's individualized, & it's a personal decision not to be taken lightly... Everyone is different... some refer to the biopsy as a Harpoon... I didn't find the biopsy to be a bad experiance at all... So we are all diferent & react, & respond differently....I mean we just don't know till we try.....
BUT.....
I also believe that once we start the tx, that we need to do everything within our power to stay on it & see it thru... thus when I relapsed, I jumped right back on the bandwagon again... (out of fear that the virus would mutate & current treatment would no longer be effective)... Sooooo Remind me, or convince me again why I should jave waited????? Opinions PLEASE!!!!
:)

[jmjm530]

Cut: Should I recategorized myself?
---------------------------------
I'm not going to touch that one :)

--------------------------------

Return: I cant believe that anyone can say that there is no difference between pre and post tx.
--------------------------------------

I guess a lot has to do how you felt pre tx. I didn't have any of the problems you listed. In fact, two years prior to treating at age 56, I was competing (and winning) endurance events against men half my age. My goal now is to just back to where I was, which is partly a function of how my body will wean from tx, and perhaps partly a function that I'm now a couple years older.
----------------------

Interesting discussion, but the overall impression I've gotten from over a year in this group is that *most* do not feel particularly better after tx, and probably the opposite. Just read the five or six links Chevy and/or myself posted recently posted in the "Long Lasting Symptons" thread for starters. Anyway, that's my story and I'm sticking to it.

Hope everyone has an enjoyable weekend.

-- Jim

[Kalio1]

I couldn't agree with you more.

[Myown]

Jim said.
A lot of this is mental as I see it.
-------------------------------------------------------------

You said a mouthful ,at least in my case, so true.

see ya, have a good weekend.

[returntosender]

I just think that time is going by too fast not to treat this.  I treated four times before it took.  I was quite happy that I did the treatments.  I believe because of the treatment I did not progress at all from my first biopsy 10 years ago to my last in 2005.  If I waited, I would likely have progressed to a worse state making the chance of success smaller. The amazing thing to me is that I began this round of tx 18 months ago!  I cant believe that so much time has gone by.  

The question is, would I rather be here 18 months later with no virus and a chance at a real life again, or sitting here worrying and waiting with the virus gaining momentum each day.  I would choose this spot every time.  I am glad I treated. I am proud that I made it through this. If nothing else I learned that I have the strength and will to battle some pretty significant odds.  But if they come up with a pill in the next few weeks or months that wipes the virus out permanently without any side effects and grows your hair back to teenage level and gives you great teeth and libido - well then I will feel pretty stupid.

[jmjm530]

In my last post, I didn't want to get into the pro's and con's of waiting versus treating,  but merely explain that none of us are trying to second guess anyone else's decisions or make a decision for them. That it's a very personal choice.

That said, both Chevy and Rev have done a really good job of why waiting makes sense for some. I just want to add that while the drugs may be several years out in terms of coming to market, within  the next 6-12 months we will have very strong indications whether or not VX-950, for example, will pan out. Also, if the Prove I and Prove II trials do well, there should be many more slots open next year in trials to follow. As both Chevy and Rev suggest, this is a different time than before, hopefully a pivotal time in Hep C treatment. I know, I know this has been said before (remember BILN XXXX) but the consensus seems to be it's different now. That's why I personally feel that a very reasonable strategy for someone without significant liver damage is to wait at least 6-12 months to get a better peek at the future. If the peek doesn't look all that good, combo treatment is still there.

Be well.

-- Jim

[Kalio1]

The people that choose to "wait" still have an INFECTIOUS DISEASE. There is still some risk of them passing it to others. I think that is an important factor that is not taken into consideration as much as it should be. Due to the stigma, I think a LOT of people have this and don't mention it to others. They are all capable of spreading this virus. I don't want my doctors or nurses to have it, there is a risk if they aren't undetectable and treating however small.

[TatorToT]

Good To See Everyone...
I've been MIA due to a family matter that required me to stay in Ga. since mid Oct, but I have finally obtained temp Guardianship of my 10 mo. old grandson.... so I have a new little travel buddy now, & he & I will be heading back to Washington this Weds. This ought to be interresting as I have never traveled via airline with an infant before, & I detest folks with little kids crying on flights... praying I don't become one of those people I dislike to travel with... Ugg!!!

Anyway, This is a great topic, & I can sure see everyones point of views... & I have to remind myself that when I first got here in Oct 03, nobody had ever heard of VX-950, & Pegasys was the latest & greatest (Now I am wishing I had of bought stock in that the first time someone came over on this board & mentioned it) Darn-It!!!

I'll definately agree that although Pegasys was certainly not easy, it was far better than for those on the original Pegitron ever had it... but I am bias on that as I feel I was truely blessed to have been one of the more fortunate ones that was not affected as adversly as the majority seem to be... which brings me back to this thought..... AGE... what do ya'll think about that??? I mean Snooks skated thru relatively easy, & far easier than I.... For me the MENTAL Aspects of Tx was far worse than the physical... but I did have painful flare-ups with CTS, which ahas now subsided again.... only other time I had that was in my last trimester with my second child umpteen million years ago.. & it subsided within 6 weeks after delivery... so that was a pre-existing condition that obviously got aggrivated... so obviously TX caused some kind of constriction...

Sooo my thought process is... One Of Two Scenerio's...
1) those that go thru little to no sides... had little to no pre-existing conditions????

2) Those that go thru little to no sides, do so because they are younger possibly???

Cause Snooks is young, & I am younger than most here (probably) I Hope, I Hope...LoL Soo that was definately one ponder

I still do lot's of pondering over lots I read on the board, & I try to stay up to date on the new meds & trials (as I have not achieved the so called CURED Status YET) but I think I will (I'll let ya;ll know that in April when I do my one year post Tx PCR....

I had been infected for approx 23 years, but I attribute the reason for little to no liver damage, was probably cause I have never been a big time drinker, as my drug of choice had always been Pot (before I got into trouble for it) so, then I didn't do that for almost 15 years (did try it on TX when I busted my youngest daughter finding it under her dresser)...
sooo... ummm, that brings me to that subject too... I mean what can I say, I forced myself to smoke the evidence...LoL, & seriously it was GREAT, & had I of had access to more, or if Ga would have been a MM State... I'd of probably been more than happy to do that on a regular basis, & I do believe that I would not have lost as much weight, & wouldn't have needed all the helper drugs as in the Zoloft, Ambien, or Xanex... had I of been able to do that...... BUT now being OFF Of TX... I have no desire to smoke up at all... & I have found I don't even desire the wine either... It's almost like I am high on LIFE, & I have enough going on & on my plate as it is... so I want to get thru it with my own dang raw emotions.... something about doing TX & taking all those pills & injections, left me with a since that I was Robbed of nearly 3 years of my life... I mean the only symptoms that I can even possibly attribute to being remotely related to HCV prior to TX was the Fatigue... & I had it bad... & I must say that has since been resolved... I have the energy... but the TX has left me with brain fog... so again... the TX was harder mentally than physically... & mentally I still have remnants (Chemo BRAIN) left over... so that's why no desire to drink, smoke up, or do drugs... I am trying to fix my brain... & that IS THE NUMBER ONE THING That Concerns me about the then current Poison (Pegasys)many of us were/are taking... & I suppose that's a small price to pay for getting rid of the virus... but IS IT REALLY????

I personally can not funtion mentally, & am not near as sharp, or quick witted as I used to be... & I could never achieve, or maintain the technical status, & ability that I used to could have... so was THAT my trade off??? I dunno!!!

I feel like people with thyroid burnouts... ect... probably had some kind of underlying medical condition beforehand, even IF perhaps it had not benn diagnosed prior to TX... it's like the TX seeks out our weeker aspects & plays on them... Okay, so I just called myself week-minded... but I suppose that was always a prior possability too... I was just too stuborn & determined to realise it???

I will say that TX & loosing that 3 years & having gone thru that & shared others experiances on this board, that it did give me a greater appreciation, & value, & respect for Life itself... but that's a Plus.... so in that aspect... my Quality Of Life Has Thus Improved... it made me more sensative to others!

However another concern of mine IS THESE TRIALS.... Now Had I of HAD To do a Trial to do my TX... I would have probably waited till I could at least juggle a way to afford the real Mc Coy...

Trials BUG Me... & I realise that they are a golden opportunity for many... but it's like being a Guinnia Pig, & plus (depending on the type of trial) you don't know IF your getting the real deal, or the proper dosage ... ect... & that seems like that is a lot to put onself thru mentally & emotionally, plus many have to drive to these far off places to get there tx... I don't know about ya'll but I got severe Road Rage on TX, & pretty much Quit driving because I was not safe to be on the roads, If I wasn't mad, I forget where I was going... ect... so again (Mental Aspects) & I found it better not to drive (which my vehicle suffered for tremendously) I only put less than 5,000 mile on it in 3 years & in the last month I have sunk nearly 1,600 bucks in it because it basically dry rotted from sitting... damn thing had cob-webs in it for Christ Sake... so TX is no walk in the park for sure... & there are sooo many decissions & soo much to consider before making these decissions....& that decision is certainly not anything to be taken lightly..

Soo, I respect ya'll opinions, & appreciate the feedback... but I am wondering if the vx950 is gonna be the new Walk in The Park... & what it's Long term post tx repercussions will be... Humm...

Okay..
I think Kalio, MyOwn, Return, Jm, Rev, & Chev have all made some VERY GREAT POINTS & I am enjoying this thread....
Still though....
What do ya'll think about Age Factor role in SX's????
What do ya'll think about Trials???
AND... as Kalio Just Mentioned above... the Harboring of the Infectious Disease... I gotta tell ya... That Point Alone scares the bejeebies out of me... cause it's TRUE, & It's a FACT... & Personally... (again Mental deal) I had to TX... NOT TREATING Was NOT An OPTION For Me... I couldn't live with myself Knowing that I had it.... I mean when I discovered the diagnosis... all I cared about was getting RID of it at any cost or circumstance!
:)
???????????????????????????????????????????????????????????

[susan400]

What about those of us post treatment now, but who have treated several times without responding?   How are we supposed to feel?  It's been since 1997 since I was pre-treatment and I've never known what it was like to be a post-treatment person who was SVR.   I'm not feeling sorry for myself, but it's just the facts.  I know, I shouldn't even be responding to this post since I haven't been post treatment for 2 years.  But, I couldn't help it.  I feel frustrated with the whole thing.  I don't know if I'll try something new, or not.  I have mixed feelings about trying again, unless, of course, I had a bunch of different docs wanting me to try a protease or polymerase inhibitor.  But, I'd still be going into it with an ambivilent feeling, so would my lack of positive attitude even make it worthwhile?  I don't know.  Time will tell.

Susan

[jmjm530]

LOL. Look who came out of the blue today :) Nice to see you, back again.

Hey, no one's saying anyone is a fool for treating or not treating. It's a personal decision, a difficult personal decision that just about everyone here (but Forseegood LOL ) has made. (Sorry, couldn't help that one).

If you split the page in two columns you could fill both with reasons for and against treating geno 1's with little or no liver damage. In fact, a very good debate on this with Dr. Gish and Dr. ??? on the Clinical Options web site.

It's obvious your decision was the right one for you and that's what's important. However, when people ask what do you think, you tell them. Overall, the "bias" here if you want to call it that is to treat, with some shift lately attributable probably to the hope of newer drugs in the pipeline. That doesn't mean everyone should wait, doesn't even mean every geno 1 with little or no liver damage should wait, but it does mean they should consider waiting as part of a strategy to get rid of the virus.

Like I've said, personally if I had little or no liver damage I'd wait at this point in time. And that's exactly what I did myself. I waited till I was a stage 3 and then waited another three years because I was told the tx drugs were toxic. Am I suggesting others follow my lead, h*ll no. I played it VERY close to the edge, but that's me. That's how I live.  We're all adults here, and everyone makes a decision that's right for them.

Be well. Be happy. It's Saturday Night :)

-- Jim

[jmjm530]

The debate referenced in the last post was on the Projects In Knowledge web site, not the Clinical Options site.

[Myown]

Thanks guys!

Chevy,,Yes the ickie virus thing,,living with it,,that is bothersome. That makes it hard.Thanks for your input. Glad that you are enjoying life again,,,it comes through that you are thrilled you got through this and you sound so happy, good for you! Happy for you!

Jim,,thanks as always. It does amaze me though that you carried this all these years and it seemed it didn't weigh on your mind,,,which is good, should say great, but alot of us seem to have trouble in that area.I have that "violated feeling." I know what your saying though, if waiting is possible, wait for better meds, in some cases. I just want my "self" back. I don't want to share my living space. I'm sure you know what I mean. Very hard decisions comming up. I'll know more soon. Thanks

see ya

[jmjm530]

My: It does amaze me though that you carried this all these years and it seemed it didn't weigh on your mind (for 35 years)
-------------------------------------------------------

Keep in mind for the lion share of this time I didn't know I had Hep C. My dx was "chronic persistent hepatitis" in the late 60's and since there was nothing to do about it, I simply moved on and lived my life. I've said this before although unpopular with some -- I really think the "stigma" of Hep C is an influencing force that drives some to treat. Not entirely but at least in part. I never had to worry about telling anyone I had Hep C for most of the time because it hadn't been invented yet :) I never felt that "icky virus thing" you and others have referenced because the virus didn't have a name and no stigma. Most of us co-exist with many viruses our own life but don't lose sleep over it. A lot of this is mental as I see it. Hopefully, the preceeding will not be quoted out of context. I'm sure many know what I'm talking about.

-- Jim

[avidreader]

The full saying is "happy as a clam at high tide." In other words clams like high tide because they can't get raked up and gobbled off their half shell. ;-)

[Eisbein]

To each his own...watch and monitor...hell no, never.
I make this statement while wishing I would feel half as good as I did before tx.
I could name 20 reasons why to tx at stage 0, but we have gone over this ooodles of times before, don't feel like covering the subject again.
I give one reason though...stage 0-1 has a better chance of winning this game than stage 2,3,or 4.
Those that want to wait for better drugs in hopes of escaping present tx misery, fine.
The new drugs in the pipline come with their own side effect profile, no free lunch.

Ina

[amicraxy]

sorry if this ? bothers anyone.  I was hcv2 no virus after the 12of24 weeks on tx.  I want to stop tx with 4 weeks left  3 after tonight. I have precious little brain left even before tx.I don't want to lose whas left.
  I'm sitting here thinking about what I'm writing right now am even if everyone screamed "stoooop"  I would most likly shoot that stuff into me belly at 6:00
So I just wasted more space.

[returntosender]

As to sides, I started tx at age 55 did 48 weeks full compliance and did not get depressed, did not have anemia, did not have rescue drugs at all except for occasional pain meds and worked the whole time. The only really bad skin problems were from a flu shot interacting with tx.  In retrospect most of my troubles came from anxiety over what "might" happen to me. I was virus free at 3 mos post and I am going for my 6 mos next week.  Go figure.

Thinking about post tx sides, I am recalling what we used to, and still do, say about addiction (I am sober 20 years, another unpleasant pretx side!) - that addicts spend 85% of the energy trying to manage their addictions.  It seems to me that the same is true with disease.  How much energy do we spend managing the illness, the tx, the recovery from tx?  I bet 50% might be a fair guess. Can you think clearly when 50% of your thougts, emotions and energies are devoted to such dire subect matter.

I have said this previously but it always seems relevant - I wonder how each of us would feel if we could live in our bodies alone without the accompanying cacophonies going on in our head?  I am sure there would be lingering sides from this stuff, but which ones? And how would we react to those without having them act as short fuses to these other hot issues such as was it worth it or not.  I dunno. duuh. chemo brain alert.

"Chemo brain" as reported recently in the news is a measurable effect of cancer therapy - methotrexate and 5-fluorouracil (5FU) plus a dash of Tamoxifen.  These headlines from October are not about interferon tx although it is rather obvious that Interferon does alter brain chemestry.   But even in the cancer studies, doctors reported that most patients should return to normal in 1 to 2 years.  Some did show problems 10 years after tx.  There are also chemical changes from amenia, depression, elation, intimacy.  Get better, get happy have bam bam - viola -chemo brain.  

Its like math I think.  If you think you are good at math you stay with a problem longer because you EXPECT to solve it.  In the end, the added time will allow you to solve it. If you think you suck at math, you will have great anxiety over problems and give less time - voila - problem not solved but stomach acid increased.  What we think determines what we are. I wonder how that fits in to all this post tx stuff.

[skiff186]

Diagnosed geno 3 in 1998. Probably had disease 20 to 25 yrs. Biopsy at time of diagnosis - level 2 fibrosis.

Started to get tired and weak prior to Tx. Had to nap every day after work...heart palpitations were a problem. Thought I had MVP syndrome or fibromyalgia.

TX 48 wks in 2004.

2 yrs post this month.

Minor Muscle/joint problems that were not present pre tx. Keep getting muscle pulls and strains, very strange.... never had these type problems before. Minor joint pains at times.  Keep in mind I'm 52.

Had post interferon hangover, took nearly the two years to go away....but it is mostly gone.

No more naps!!!!! Energy level is good, 90% good days/10% bad... can't tell you how happy that makes me feel!!

From my perspective tx was worth every miserable minute.

Just my little report...this forum really helped me make it.

God answered my prayers...hope he answers yours as well.

David

[amicraxy]

It sounded to me like you were saying much of this is in the head. Well **** you if you are.  I used to think when someone talked about depression that they really should just snap out of it.  I got into a depression some where around the 3 or 4 week and it has been very deep for days on end and even today I am deeling with trying not to let it COMPLETELY over take me.  I have two children here and have done very good at keeping it together.  I now see that my perspective about others perspectives were just my limited view and some one who has been in a 12 step progam should by now have begun to understand that.
  And there is another very importen insight i have learned about myself through tx, and that is when I am feeling very low and it gets rough, anger seems to bring relife.  So **** you and I hope to ******* run into you and show you how ******* angry I can get.
  And that is how I feel after reading your very limited view, selffish view.   I can go on but I think I embaressed myself enough.   The way you see it MAY ONLY BE GOOD ENOUGH FOR YOU so return your self back to 12 step meetings and take the cotton out of you ears and put it in your mouth

[amicraxy]

85% of their time worrying about thier addictions.  thats what you said.  You should get a life.  I know dozens of people in recovery and after the first year or so just as me, dayd and even weeks can go by with out the thoughts of addiction, thats because I have a life.  If the people you hang out with think the same as you or if you get your info from books that say things like that, Seriously change your life, your not living.
  If someone has gone through tx and are not feeling right they have a right to talk about and owe it to others to talk about it.
  I thank God for people talking about what they went through and are going through.   I have suffered a lot on tx and today I am on my 5th tylanol which is a lot for me.  
  I'm getting a littlr carried away here. If I was done with tx and just dint feel righ, I would want to know if others felt anything.   Yes , I think about tx and when I am in some sort of pain I am IN IT.  But I have a life and even though I am in the middle of it  {tx}  I don't think about it 80% of the time.
  I think I just went over board writing all this. Sorry

[abbas11]

Hello.Abbas,boy.23 years old.

Intrferon alpha ruined my best younghood years.14 months post tx.
sexual dysfunction,depression,anxiety,chronic fatique,low energy,brain fog, i live as a movable dead. no fun in my life


interferon made me old,never say yes to it

[returntosender]

Sorry - didnt mean to upset anyone, dont even think I was responding to anyone in particular.  Just kinda thinking out loud a bit.  I never intended to say that it was all in the head.  No way!  I just think that in my case my head is involved and I am not sure how much.  In reading other posts it occurred to me that perhaps my pre treatment sides were not really sides but bad lifestyle.  My ears are open and I hear you.  Your not the first to tell me to f off or get to a meeting.  So thanks (not for the f off) but for the good suggestion.  My deepest apologies to you, you certainly dont need any more on your plate than you already have.

[returntosender]

BTW, the 85% is before we get into tx not afterwards.  Once that energy is turned to recovery it is amazing the results.  Anyway, thought I would clarify less someone thinks I am anti addict or somthing. And I certainly didnt mean that people should talk about these things.  Just a couple of threads ago I was saying that we need to discuss this more.  As HepResearcher said the other day, the imperfection of language.  Without seeing me saying what I am saying and without me sitting on your side of this reading, it is difficult to convey and to interpret what the hel! someone is talking about.  Again, my apologies.