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1425305 tn?1285096454

How long did you wait to start TX?

I've been reading lots of posts that talk about people waiting a long time between being diagnosed and starting treatment.  I was just diagnosed and elected to start treatments right away,  I have a 2 year old, would like to have more kids sooner rather than later, I'm fairly young, and thought why should I give this virus any more time in my body to make more if it....but I'm curious what other people decided and why -- if thats not too personal. I realize the decision to treat is a personal one, but am curious.  I'm not passing judgement at all.  I'm just trying to understand how this works for others to get an understanding of it on a broader scale than my own experience.

Side note - I'm really unhappy that more is not done to educate people about this disease.  I have to watch how many commercials about viagara, guardasil, and the herpres meds...but no one talks about this.  So many people are going untreated during a time that they could be getting the most benefit from treatment, at a time when they would have a higher chance at beating this.  Its disappointing that more isnt done to educate.
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96938 tn?1189799858
There is a lot that goes into well thought out planning.  Whether there is a need to rush to treatment, the new drugs, family siuation, work situation, insurance. It's a big step with significant committment and time investment.  Go slow and think it through.
Helpful - 0
Avatar universal
I waited for 12 years on the recommendation of my hepatologist. My first two biopsies showed no damage and because I had geno 1 the doc thought I should wait for better drugs. It took 25 years for my liver to show signs of damage and I am no treating in a boceprevir trial. It is much more important to get the right treatment then to hurry up in my opinion. Everyone wants to get the virus out of the body quickly, but sometimes it is wiser to wait. Treating for a year or more and relapsing and doing it again is not something you want to do.
Good luck. Dave.
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Avatar universal
I meant I am now treating in a boceprevir trial  
Helpful - 0
223152 tn?1346978371
sunflower
I found out I had the virus in 1993 after giving blood.  However I decided that I felt great and did not worry about it for another 12 years.  The research was a lot harder in 1993 than it is now.  So after age 50 I asked my internist to test for it (knowing what the results would be) and ended up going through all the tests and treating in 05/06 even though my liver damage was minimal.  

I wish you luck.  It will be hard treating with young children, but others here have done it and you can too.  

Good luck
frijole
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Avatar universal
Hi....my computer's been down for a bit as a result of a facebook virus.  I posted to you weeks, i believe ago asking how you are doing w/the trial drug as the last time I read a post from you, the treatment was going well.  Computer seems to be working well now, restored to factory condition.  Would love to hear from you....cindy
Helpful - 0
Avatar universal
I was diagnosed in 2002, but have no idea how long I may have had it before I was diagnosed. At the time of my first biopsy (2003), I was stage 1 inflammation, stage 0 fibrosis, so I figured there was no reason to rush.  I specifically asked 2 different gastroenterologists, "I understand that if I develop damage to my liver, it is probably not reversible, but if I treat now or if I treat later, will that make a difference on whether I respond to treatment?"  They both said no.  (I now understand that treating earlier may indeed increase chance for SVR.)  For several personal reasons (and perhaps some degree of denial) I decided to "wait and see".  
When I had another biopsy 6 years later, I had progressed to grade 2 inflammation and grade 2 fibrosis.  The change from 0 to 2 for fibrosis freaked me out and I decided to treat.
I just finished 48 weeks of treatment a couple of weeks ago.
Helpful - 0
1253246 tn?1332073310
I was just diagnosed in March of this year.I am stage one grade 0 also.I am also a geno type 1a.I am waiting till next year to treat with the new meds that are coming out.They take your odds of clearing from 45-50% to 75-80%.I only want to do this tx once and since liver is in good shape,im waiting.its a personal decision but really dont rush-Do the research,get your "house' in order.Everyone wants to get rid of the Dragon-dont be hasty.
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1327032 tn?1288840755
I was told 10 years ago I was postive, My friend got Breast cancer and that motivated me to get help. After tonights injection 8 more to do
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1433307 tn?1300339642

Hi, I wish you the best of luck with tx & hope you have good support to help you with your child. That was one of the main reasons I decided not to treat when I was diagnosed in 1992. I have had HCV for 25-30 years. I didn't do tx at that time as I had two small children & the tx then was a lot more guelling with a very low success rate. My children are now alot older & I am currently considering tx as I have been diagnosed with cryoglobulinemia which is causing me some problems.  I would have probably waited for better drugs if I didn't have the cryo as my liver has minimal fibrosis. Hope this helps.

Aussielee
Helpful - 0
Avatar universal
It took me 2 1/2 years after dx before I was ready to treat. Most with this disease have time to think it over, get educated, and get ther ducks in a row. jerry
Helpful - 0
Avatar universal
I waited 2 yrs after diagnoses because way on back when I was first diagnosed, all there was to treat HCV was interferon and it was the old type of interferon, the Intron-A 3 x a week.  Then, I was offered the opportunity to participate in the last phase of the "new" Ribavirin clinical trials.  So, yes, I was a Riba guinea pig.  It was right before it went out to the marketplace and in fact it was FDA approved about 12 wks into my trial.  So, once again, in answer to your question, I waited 2 yrs.  At that time, I had very little damage whatsoever and I could afford to wait.  Would I recommend waiting to someone now?  It would depend on the condition of their liver actually.  If someone was stage 3, I'd say go ahead and treat now.  If they were a stage 1, I'd say wait for the new drugs.  But, everyone should always follow their Dr.'s recommendations and not what one of us say to you on these message boards!!  Susan400
Helpful - 0
190885 tn?1333025891
i've waited 4 or 5 years for the new tx..i think about it every day..have some symptoms..thats a drag....i was stage 1 now 2...i really want to clear this up and move ahead ...as soon as the new tx comes out i'm on it...hopefully very early this next year...why not wait at this point...good luck....billy
Helpful - 0
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