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Avatar universal

Dr's appt....

Hey guys!
     I just got back from my follow-up from my Dr.  Even being coinfected with HIV, my hepatologist and HIV doctor were pleased that my biospy report was as good as it was.  They both concer that I do not have to pursue treatment at this time because right now the test showed mild. mild fibrosis.  They said that yes you would eventually need treatment, but my option was right now if I didn't want to take treatment, I could wait.  Now my thoughts.....With the results that I received, I have decided to go ahead and pursue treatment but not until the beginning of January.  Please post any thoughts that you guys have..........should I pursue/begin tx earlier than the ( January) two months from now?  Thank you for all you wisdom and I look to that even now.............

In Christ,
Rick
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Avatar universal
Good hearing from you! I'm a transplant from that evil empire to the south, Illinois. Truthfully, I always felt I was born in the wrong state. I've loved Wisconsin for a long, long time, bought lake property an hour north of Madison in the 70s, and finally built a new home and moved here permanently in the late 90s. You're right about the cold AND the tornadoes. I've experienced a close one myself and the cold...-33 was the worst. But the scenic beauty...a really well-kept secret!

Ameriboi2003, I thought a lot about you and your situation last evening and think your decision is the right one. When I catch myself complaining, I've got to remember how hard it is for many others with two, sometimes three, dragons to fight. You deserve all the best and you'll get it.

Bruce
Helpful - 0
94007 tn?1224762736
great news americaboi! Bless you!  I am waiting until eric is all set - he is going into week 6 und and feeling great.  my next appt is in march but doc says he will call me before than with a trial or an idea.  I have a 0, 0-1 biopsy, my ast and alts have gone down since last visit and the fibroscan was also lower but my v/l has risen every visit for 2 years

sweetie i am thrilled for you!!!!
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Avatar universal
I agree with your decision to treat. I'm 56, male, 1a, infected summer 2005, liver biopsy 1/1 (extremely minor,if any, scarring), and VL at start of treatment 100,000.

Even in my acute phase, my hepatologist (head of liver transplantations for University of Wisconsin Hospital) kept telling me that if I became chronic and had even just a "bit of virus hiding" in my system, he'd recommend treatment. Yeah, right, I'm thinking. Well, after the standard six month wait I turned chronic, the IDEAL study at UW Hospital was closing, and I had to make a quick decision. I suggested to my doc that hey, couldn't I just live with this, not treat, take care of myself, wait it out, etc? Man, did he chew me out! I can just hear him..."you'll never be any younger or healthier than you are today! I don't want to be sitting here 10 years from now because you need a liver transplant, and you regretting not taking a chance in 2006 to clear this virus" and on it went. So I agreed and started treatment June 2, 2006. Because of the study, I was tested a lot. At week 2 my VL was 240, and at weeks 4 and 12 I was UND. I have my 24 week appointment on the 14th.

He strongly believes that we respond better when there's less damage to the liver. That's why he's so aggressive to treat instead of taking a "wait and see" approach. Again, it's a personal decision you need to make and each of us is different, as are our docs. For me, I'm glad I agreed to treat. I'm on Pegasys/Copegus 1200.

Good luck in your decision-making!
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Avatar universal
HI
I am 54 - Started out at Stage 1 grade 2 - 15 million vl - mild fibrosis - Genotype 1a - I am Tx 9 - and vl is down to 2460.

I had so many syptoms that had nothing to do with fibrosis - I had brain fog - reversing numbers and letters and speaking in opposites, fatigue, random auto-immune stuff, swelling of parts randomly.  Since my vl has been reduced, I no longer speak in opposites or repeat myself or reverse numbers nad letters.  I have tons of sx from the tx but the symptoms which my dr has said he's heard them all - are going away as my vl is getting lower.  It's not my imagination.  I also had the insurance, the support of my company, disability with the company if I needed it and family support so the timing was right - who knows if I waited a couple of years - this same supportive situation may not have existed.  But I have 38 more weeks to go and pray for UND by week 12 - shot 10 tomorrow - Good luck.
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Avatar universal
In response to the test that you mentioned.  Yes they have tested me for those test.  Everything has checked out fine......Glad you mentioned those!!!  

In Him,
Rick
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146021 tn?1237204887
I think you have made the right choice. I too could wait but as my dr told me, why wait and then have something else come along and then be fighting two issues.  You already have two issues so I think it's great you're gonna tackle one and get rid of it.  I hope to start at the beginning of the year, sooner if my labs become abnormal.
You sound very positive, very brave.
Goodnight and God Bless,
Bug
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Avatar universal
you can start tx anytime you want and is convenient, there is no urgency.  
it is unfortunate that drs are still only looking at liver results and ignoring the fact that many folks suffer in spite of mild liver damage.  It is extrahepatic manifestations like cryoglobulinemia that prompt some to seek tx, regardless of biopsy resutls of mild fibrosis.  Have they tested you for HLA-B27 and cryoglobulins, before sending you home to relax?  Or ran a test for antithyroid antibodies?  If you have mild damage and are not at risk for any extra hepatic conditions and can live with the virus for yrs to come, that might be a good choice for you.  If not, ask for tests other than those only assessing liver status.  Hep c is not a liver disease, is a blood disease.
good luck in your quest
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Avatar universal
Sorry guys I meant to post my results in the above post.  Below you will find:

Male 44
Genotype: 1a
VL: 12,100,000
ALT: 102
AST: 44
BX Showed mild fibrosis Stage 1 and grade 1......
HIV:  high t-cells and low VL

Once again thanks again,

In Him,
Rick
Helpful - 0
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