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Avatar universal

Does Everyone Here Believe In Treating ASAP

I was diagnosed in 1995, when after my biopsy I was told I could wait since I only had mild inflamation of the liver. I was also told by my dr at the time, that I could wait until I was sicker, hmmm. I choose not to wait until I was sicker, Mono-interferon was the only drug available back then, and the protcol was 6mths. I did not respond and was labled a non_responder

I found another dr. and he put me back on for 1 year and I did respond, however, 7 months post tx I relapsed. To say that it was discouraging would be putting it mildy. However, I licked my wounds and went for my 3rd round, which was 18 months. Many times, I wonder what if I would have accepted being labled a non-responder, what condition would my liver be in now...

Happy to say, my tx journey ended in 1998 and May 16, 2007 I reached 9 years of being cured, yes I dare to use to "C" word.  

Getting back to my question, do must of you feel that tx is necessary and that you should not wait....
63 Responses
264121 tn?1313033056
Its always encouraging to hear from someone who has SVR'd and maintained that status.  Your case is particularly encouraging because it gives hope that there is still a light ahead for non-responders.

The to treat or not to treat issue can leave a lot of people arguing.  For me, there was no question at all.  To treat and treat immediately was more how I felt.  But then, I had a brand new acute infection that was documented as being brand new.  I can't say though that I would do it differently otherwise.  I'm a pretty agressive person.  I would probably treat anyway, although a lot of folks are going to disagree.  Certainly, its a personal decision.
Avatar universal
Oh, I know this can be a hot topic, and I don't understand why. I mean if we were told we had cancer, I don't think we would say, oh, I'll wait until a better tx is available.lmao

Thank You, I try to encourage as many as I can. It did take me 3 years, wasn't easy but my mantra is no pain, no gain.. Did you clear? I hope so:)
264121 tn?1313033056
I'm in my fourth week.  They'll pull a viral load from me on Thursday and of course, I won't get the results for a couple weeks probably so we'll see if I'm UND yet then.  Cross your fingers, and not behind your back either! :)

I'm a geno 1b and my doctor has already told me I'll be treating for 48 weeks.
Avatar universal
hey, I'll even cross my eyes.. It truly makes me happy when I hear someone is doing well on tx and I'm over da moon when someone is a SVR.. I am sending good happy vibes your way.

Gentle Hugs,
Bette
Avatar universal
I found out in Aug. I had HepC & stage 3 Liver. I am in 3rd week of tx. I dont know if I would be on tx if my Liver was ok.
Avatar universal
For me, it was a no -brainer.. If I had a disease why not treat it.. Happy I did because I didnt have any liver damage and it still took me 3 straight years of tx to clear.. If I had waited till I did have liver damage, I might not be here posting.. I wish you much success with your tx..
212705 tn?1221624250
Would you please explain th last tx...18 mo.s? Pretty much everyone on this board thinks I should stop txing now. my 25 wk pcr was not significantly, but higher than my 20 wk. I have yet to see UND. MY hep dr. advised double dosing pegasys and 1 1/2 x Riba for weight based SOC.  I am gonna do another PCR early this week...hopefully it will be UND? I really feel betwixt and between. Any advice?
I'd appreciate it.
Yvonne
Avatar universal
Everyone's situation is different. Some people have other health issues. Some people need to tx right away and others can wait. There are other factors also, like age, insurance, etc. I waited 3 1/2 years before I treated. Dr. Cecil pushed me into tx when he said, "If you want to live another 20 years you better treat." Geno 1a, stage 3, 65 years old, I treated for 51 weeks with PegIntron and Riba.
229003 tn?1193705524
I am so glad you posted your stats in here - you may also want to let people that you are the owner of a very successful and highly recognised HCV Forum -

luv ya girlie - Veggie *the orignal*
Avatar universal
bette: Does Everyone Here Believe In Treating ASAP
-------------------------
The short answer is "no" -- and in fact, this discussion group is very split on the issue, in terms of those with little or no liver damage. Most everyone agrees of course that those with signficant liver damage should treat.

If you check our achives you can see arguments both ways, and these are probably one of our most heated topics.

I didn't plan to start the week on a "treat or not to treat" thread, but you seem to asking more about what is the consensus here, as opposed to why people feel the way they do -- so again the answer is that this discussion group is divided.

-- Jim
Avatar universal
When i was diagnosed, i knew that i had only been infected for 3-4 years. Dr did not do biopsy sice there would be no way that my liver could of been affected in such a short period of time.  I was only 29 years old and just had a baby. I also had another son(age 10). I was devestated to say the least. i was consumed with fear that my children would use my toothbrush or get ahold of a razor. I got extremely depressed when i read about how people with liver failure die... I thought to myself, in 20 years i would be 49..... thats young,, too young to start having liver failure.. I wanted to be around to see my grandchildren...Treatment was rough, but i feel that i probaly had it better than most due to my age, gender, and fitness... Iwas lucky to be deemed RVR and lately i was deemed "CURED".
I no longer worry about my children having the same fate, and i have been able to put this behind me.. Its no longer weighing me down, and it seems like my life is back on track. As far as post tx sx, they have diminished.... Once in awhile i still have a dull pain in my joints(hips) .I used to be a heavy sleeper but now i am not.. But thats all on that note....





229003 tn?1193705524
I believe the same as you "if you got it cure it!"  I didn't always feel that way (got side tracked by a few people and things along the way to making the decision) but you have and always will be a big inspiration to me...You're defiantely a great role model for HCV successes and a true advocate - Hey we also have another great New Yawker in here - her name is NY Girl - she did 72 weeks and has achieved SVR - you NY gals are tough cookies!!
Avatar universal
I was dx'ed in 96, while I was pregnant with my 1st child. When he was about 18 months old, I tx'ed on mono therapy. My LFT's were crazy high and iron was building in my blood- I guess the dr's didn't like how my body was doing with the Hep C. Well I did respond but not enough. (Note- I always thought I was a nonresponder, but my doc told me recently I was a responder- that's good I guess). After that I just got on with my life, had another kid, and somewhere along the way slipped into denial about my Hep C. About a year ago I found this forum- it taught me aLL about Hep C and gave the courage to get another bx. I'm still a Stage 1, Grade 2- in 96 I was Stage 0. So I'm gonna chill for a few years til the next tx comes out. Even though I had no sx at all on my tx back in 96, I just don't see the point of tx'ing now when my liver is OK and better meds are so close on the horizon. I also have a hubby who probably needs to tx more urgently than me, two busy kids and a 7 day a week job. Just not a good time to feel like sh$t! I pray that I don't regret this decision... but it's the best I can come up with for now.
Best wishes,
Dee
264121 tn?1313033056
The reason I feel the way I do about tx has to do with my personal belief that hepc affects other organ systems than the liver.  So.  *I* feel, and this is only me, and there are EXCELLENT arguments the other way as well, that it leaves a lot to chance in terms of other organ systems (like the kidneys and the brain, both of which have current research to suggest that hepc affects them negatively), not to treat just because the liver is not at a certain stage.  In fact, and I am going way out on a limb here, I think the cumulative effects of hepc on the body will someday be known to be far far greater than that of which we are now aware.  This is THEORY though, based on a few studies and pieces of research, but I feel strongly enough about it that my course was clear to me.

Also, quality of life issues are important.  Can you live with an autoimmune disease?  It's a very real possibility during and after tx.  What do you want in life, quality or quantity?  Of course, most of us want both, I know that's true of me.  But.  I'll take quantity if I can have any semblence of reasonable quality at all, even if I'm on painkillers for the duration.  In other words, I'd hold on kicking and screaming, scratching tooth and nail to the bitter end.  I'm the kind of person who says, NO, don't unplug me!  They may have a cure for brain death in twenty years! ;) LOL

However.  It's not a decision I really had to make based on my finding out I had hcv so fast after exposure AND being acutely ill.  Due to these factors it wasn't really an option not to treat in my mind.  Its almost not even fair for me to have an opinion about it.
229003 tn?1193705524
very good point about effecting other organs and tissues - I am in a study for Insulen Resistance - the first has eof the study is complete - 20 people that are all GT1A have successfully treated and reached SVR after a 6 month PCR - all of these people were insulen resistant before starting tx - now 6 months post they are all insulen sensitive - so yes, it does effect you in many ways...
94007 tn?1224766336
I have not treated yet, I do have some other issues and very little damage which has caused me to hold out for a bit for an "easier softer way".  I have infected 2 of my 4 children. My son (now 19) finished tx this summer - he was UND from week 2 - praying for SVR - he had significant liver damage.  My daughter(21) is in fairly good shape (though why my liver is less damaged than theirs I dont know) and has only now begun to discuss the HCV. I did not want to tx until I was assured that my kids were OK, I am a little more open to it now, but my experience on this board (off and on for a few years) has been that it's divided - more pros I think.  
229003 tn?1193705524
wow - I had no idea 2 of your kids were infected, that a tough one I am sure...is your daughter going to treat?  how old is she?  Bless your sons heart for tx'ing I pray for his SVR too!
94007 tn?1224766336
She is 21, I dont know what she is going to do - she is only covered by insurance for a few more years so it is a concern, but she is listening. we see the same specialist but she goes to her appts alone as she is in college. The doc tells me to leave her be and he will take care of her - I think he has her in mind for a trial. My son also has special needs and he never,ever complained all through tx. He is my hero!
229003 tn?1193705524
Bless your heart!  what a wonderful Momma you must be - Your son sounds amazing!!  I remembe you posting a few years ago - As I recall you are from Boston?
Avatar universal
I am not trying to fire up your week.. However, I have a HCV forum over 7 years, which I shall not name, because I am not here for that reason. I asked that question because I have seen too many people die, waiting to errrrrrrrrrr get sicker or wait for a tx that was kind & gentle. HCV effects us all in our own way, some progress in warp speed, while other may die of old age.  Guess I should have posed it another way. Why do people feel they can wait to tx HCV, when if you were diagnosed with another illness you would treat.
94007 tn?1224766336
Thats me!
Avatar universal
I shall keep your children in my prayers. You did the right thing, our kiddies always come first. Once, you know they are ok, think of yourself.

Gentle Hugs,
Bette
Avatar universal
All 3 years were done only with mono-interferon.  In 1995, riba and peg were not available. However, at one point during those 3 years it was available, but I since I knew interferon well, kinda felt like the poster child for schering plough, why try another drug. I was used to the sides and was not looking for any more, lmao
Avatar universal
I think this is a topic that needs to be spoken of more and more. I also feel strongly that people need to know there are many SVR, not just me.. Nice seeing ya here, veggie

Smooches,
Bette
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