If anyone would just like to share your experience ...

...I'm new to this community. I hope to find support and friends to support through this ordeal. After many years and many doctors trying to find out why I am so tired and foggy and lifeless I received my diagnosis in January of 2006. I was shocked. I have no clue as to how or when I was infected. I started to learn online about the disease and the treatment for it. I learned of the new drugs that are in trials and decided that would be way to go. By the grace of God  I am now enrolled in one of the studies. I will start the trials this month and pray that I get the new drug. I have been reading about the standard treatment and it sounds like a brutal 48 weeks. I hope to not have to go through a full 48 weeks as I am already very tired and can't imagine being worse off.

Today I will have another liver biopsy as my last one was over a year ago. I quit drinking when I was diagnosed (wasn't a heavy drinker, just a couple of cold ones with my pizza or tacos) so this will be interesting to see if I have been able to improve my liver with all the herbs I have been taking. I was stage 1 grade 3. I will post the results when they are available. I have been advised to only take vitamins now. I guess they don't want anything to interact or interfere with the results of the study.

If anyone reading this is starting trials as well and would like to compare notes...please don't hesitate to contact me. If anyone would just like to share past experience or just offer words of encouragement I would love to hear from you as well.  Last week I learned of an old friend from school who lost her husband to the disease…and another who lost her brother. I have read great things about the new drugs but haven't heard from anyone who has been in trials...so if any of you have cleared after being in the studies please post...

tks
Gator
1b

[Marcia2202]

Welcome to this forum. You have come to the best place you possibly could have. I myself was diagnosed with HCV genotype 3 in March and have most probably had it for 25 years. I am still waiting to have my biopsy done and will most probably start tx in July. One of my twin daughters (18) is also infected. She probably had it since birth.

I live in Denmark and am not participating in a trial. I am educating myself as much as I can about the disease to prepare myself for tx. I can see that you are doing the same and you will meet many interesting, knowledgeable and loving, supportive ppl here. They are all amazing.  Marcia

[FlGuy]

About a year ago I did an approximate count of the Florida people who post in this forum from time to time. They are all over the state.  I'm in South Florida.  There are about 25 of us, so you are certaily not alone.  Some have been successful in treatment, some not.  Some are thinking about it and some have participated in trials.  Different genotypes, different situations.  The commonalities are that all are dealing with hcv in some way and all are willing to give support and advice.  Hcv and it effects are a part of life but it should not be a person's consuimng aspect.
What drug trial will you be involved and where are you being treated, one of the universities?  By your moniker, I'm guessing Gainesville, a place with a very good hcv reputation.  Others have treated there.
Take care and stay tuned.

[FloridaMouse]

Hi Gator,

I'm another Floridian and my treatment plan (I'm doing 72 weeks and am on round 2) was actually layed out by the "Gators".  (i.e.  Shands at the University of Florida in Gainesville).   I'm on the central east coast of Florida and grew up in the Ft. Lauderdale area.

Are you going into one of Dr. Nelson's trials at Shands?  Dr. Nelson is my doc up there.

FloridaMouse

[Fl_Gator]

yep...I am at Shands even as we speak..waiting for a second liver biopsy.

You are on "round 2"...what does that mean? You didn't respond on round 1? Would love to know all about your experience here. I feel confident with the staff but the fear of the unknown is stressful. I'll post often as I'm sure there is interest out there. I know I can't get enough information. Tks for your input...gator

[FloridaMouse]

I did my first round of treatment from May 9, 2006 through April 17, 2007 with PegIntron and Ribavirin.  I cleared the virus by week 24 of my first round of treatment and remained clear throughout the rest of treatment.  5 months post treatment I found out I relapsed.  2 months prior to finishing my first round of treatment I wound up with rheumatoid arthritis (RA).

My GI sent up to Shands when I relapsed because Interferon is a no no with people who have come down with RA.  My local GI wanted the powers to be at Shands to decide what the heck to do with me because I have advanced liver damage. (Stage 3/4, Grade 3).  Shands decided that since I was already so far advanced and that there we no new treatments coming out within the next 10 years that do not include interferon, that I should try to treat one more time.  I went into treatment this time with the understanding that should I have a bad RA flare while on treatment that I would have to stop.  I'm doing 72 weeks this time with Pegasys and Ribavirin.  I just found out Friday that my 24 week PCR came back undetectible so I'm a  happy 'lil hepper.

Good luck to you.  Shands ROCKS!

Mouse

Mouse

[nersayner]

Good luck as well and I just started this site also and love it. I am genotype 3 and my biopsy showed stage 3 for me which was higher than we had expected but glad we caught it. I was diagnosed 10 years ago but my levels were almost normal so they suggested waiting because I was also working and doing grad school. Besides they predicted the tx would improve over the years which it has. After finishing school last year they said why dont we revisit this hep thing. so here i am now in my 8th week of tx. my team is great at Kaiser Honolulu and tx is going great. i feel a little burnt out but that is to be expected. i have a huge support system of folks who have gone thru tx as well as well as those who havent but are rooting me on. it could be worse...after all, i am in hawaii...god is good. hang in there, you'll make it through. dont know about the trials but would love to hear about your process, keep coming back.....aloha

[Fl_Gator]

So sorry to hear that your daughter has it too. I had my youngest tested she is negative. My oldest needs to be tested but has had no insurance till recently. I hope he is clear as well. I still need to have my spouse tested....I will be devastated if I have spread this dreadful disease. I still can't imagine where I could have gotten it or how long it has been. I know that I have been tired for a very long time. Some days worse than others but no Doctor could pin point it for many years. I guess the ast/alt is what finally gave it up in 2006.

Denmark...wow...do you travel much or see much of the rest of the continent? My daughter (she's 22) wants to backpack through all of Europe...I told her she has to take me. She said she will sneak away and not tell me when she is leaving so I won't follow her.

Please let me know anything that you can about maintaining good health with this dragon...I will do the same. tks

[Fl_Gator]

Thanks for the update. I really don't know anyone who has this unfortunate disease other than the two I mentioned in my first post. I met a man briefly at the hospital last week that will be in the same program that I am in but he wasn't too very chatty till I saw him out by the valet. Then there wasn't enough time to talk. I am very happy to have found this forum and hope to learn much and share much here. I try not to say much to my family as it seems to cause some distress...especially with my children. My husband is very supportive but he doesn't know much and neither do I. My mom is a nurse but she is caring for my grandmother who has cancer and I don't want her to worry about me while she has so much on her plate already.

I can see that this will be a great outlet for me. I greatly appreciate everyone here and hope I can share as much info as I can learn.

[Fl_Gator]

God Bless...hope tx works for you and that you will post your results as you get them. Are you on a standard treatment and will it last 48 or 72 weeks? I know type 3 is a little different than what I have. How was your first week on it? I work outside...it's hard right now without being on anything. I am afraid of what it will be like through the summer. It's already in the upper 80's here most of the time it is good to sweat out the toxins but I may have to find an indoor job. I am always very tired....Gator

[nersayner]

I am on 24 weeks and the first week was WAY better than I expected. i think i got myself all worked up. yes it is hot here in honolulu already too and it seems harder now than in the beginning because my hemoglobin has dropped so i feel like i am really draggin. but i am 30% thru now officially so not much longer. it really has gone by fast. good luck to you!

[allanh]

Welcome!

I just completed my TX, and have documented the entire journey at:

http://hepatitis-c-log.livejournal.com/

This is a great forum, and I'm sure you'll find plenty of practical and emotional support. I sure have!

-- Allan

[rita863]

Welcome!

I have been treating since Jan.  Sides are bearable, good luck with your TX.


peace
rita

[merryBe]

Hi and welcome....one easy way to get to know peoples experiences is to click on their name of pic. this takes you to their page, and many have given great details in their journals or bios.

please keep us posted as to your trial. We are all very interested in the new drugs, and the result folks are getting. Hope you do well with it.

If it is any comfort...I felt much worse leading up to treatment..and for a while in it..
but now that the virus is gone my night sweats and fevers have stopped...so, still having side effects of TX...but really improved in some ways already and in spite of fatique from low HGB....but still..keep a positive outlook...you've got small liver damage..so you may handle the treatment without much trouble. Of course some of that will depend on what dosages of what drug  you get...but, it's all a c.rap shoot....better than no cure though, right?