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ANOTHER UPDATE

Got a voice mail from nurse late yesterday, she said "have really good news for you and I'm still working on the other thing. Will call you on your cell" Well since I haven't heard back yet nor am I going to waste my time calling THEM they get upset unless I use voice mail line and I'm pretty good at cutting off my nose to spite my face here goes.... I'm going to assume (makes an ass out of you and me)that the good news is I'm undetectable at 24 weeks and the other is they haven't resolved anything with the insurance co. yet. As some of you may have picked up on by my questions lately I am no longer on effexor. After much thought and soul searching I decided to wean off the stuff as I really felt it was not right thing for me. I had been advised to start it before tx which I did but had no history of depression. Took 2 weeks decreasing 150mg dose and went cold turkey last Saturday. I believe it was the right decision FOR ME ONLY just my blood pressure has went from the 140's to below 120's were it used to be before the effexor and I am feeling better everyday it has been harsh at times. Had my "finest reba moment" yesterday just ask my wife and watch for the broken glass that may still be in the kitchen. I think it may have did me good to cry for the first time in years. My relationship with docs office is down to zilch or I would asked first. So kids DONT TRY THIS AT HOME!  No one ever told me I had much brains to race a bicycle down a mountain at 50 + mph but I do believe I made the right decision. Knowing what I know now I would not have started AD unless I had too.
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Avatar universal
well I think it would be lovely to have a couple of new faces at me and britgirl's lunch date.  I'll arrange with her and find you here!
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I live in Teddington, South West London. Would love to meet you and britgirl sometime. I did shot 23 on Friday Only 11 days to go!
Best wishes
Joanna ( baldy )
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I've just scrolled through and see you've got 5 weeks to go...getting near the end, then. Are you a 3a?
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I didn't know you were one of us!! Where are you in your treatment, or are you still thinking about it?It's hard to remember everyone's stories....Watch this space for possible meetings!
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The last days really drag, but you've got a nice break to look forward to.  When I finished we went off to Tenerife for a half term break with our daughters.  It was only a last minute cheapie, but it was a really memorable holiday.  I can remember getting really annoyed with myself for being out of breath walking up hills, but my heamaglobin was rock bottom so it was hardly surprising!
Where in the UK are you?  Im in the West Midlands.  Perhaps you could come to one of britgirl and I's celebratory lunches!   It involves me catching the train down to London, meeting her and going to a London pub for lunch and (dare I say it), a couple of glasses of red and a gossip!  Fantastic!
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Thanks for your words of encouragment.
I spent yesterday evening making a wall chart so I can cross off each day of my last 14 days of tx.
Also my Mum has arranged a short holiday for me and my daughter during half term, one week after finishing tx.
Britgirl, we are going to stay in a cottage in the Cotswolds for four days. My Mum has checked that it has good central heating and hopefully the snow will have gone by then!
14 days and counting and I'm actually smiling today!
Best wishes
Joanna ( Baldy )
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Avatar universal
PS- I have a question- I've been lucky with side, not much to talk about, your usauall fatigue, that is probably everyones biggest side, I do have one side that bothers me and it is my tongue burning when I eat or drink, it actually just tastes like the food or drink is overspiced but it's not- does anyone else have this and is there something I can do?- Thank's -- HD
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Way to go! I was lucky enough to get a good hep doc from the begginning and believe it's important to have someone helping and not screwing up your treatment.You will do well I believe cause you make the effort.
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I'm sorry that you are feeling like this; for me too, the last few weeks were the worst. The cold weather doesn't help, either. My way of getting over tx and drawing a line under the experience was to leave the country immediately, and I went on holiday for 2 weeks in Portugal as soon as I'd finished. I know you have a daughter in school and a job and this may not be possible but some kind of break is a really good idea. Maybe for Easter? Life does get good again, Joanna. Doing treatment was one of the best decisions I ever made. Try not to let it get you down at this late stage.
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dh:  i have concerns about effexor and some of the newer AD's.  my dr. wanted me to go on effexor because i tried many AD's years ago and they all made me sick.  he said effexor works well for people who cant take other AD's because it does two things instead of just one to the brain.    well i went to an effexor web site and the comments made by people who wean off it scared me.  i never tried it.  i did take a low dose of trazadone during tx. and still take very low dose.  it seemed to keep me from the blue, sad, or crying mode.  but  still had bad thoughts.   anything would trigger me.    i think the weaning off AD's (especially the newer ones) side effects can be confusing for people also ending their treatment. whats causing what when we use so many drugs??

joanna:  the end of treatment was the hardest for me.   my family was afraid i was going to quit so close to the end.  i felt bad, bad, and more bad.   just continue slogging thru and get thru each day.  find something each day to fix on in a positive way if possible. but dont quit.  a special prayer for u.....
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Avatar universal
My Doc started me on AD's before tx because lots of people on this forum had told me I should get on them, so I did and been on them, my question is what if you are on them but actually don't need them them. How will your sytstem react to them, will they make you feel better than you should or just not do anything, I'm on paxil, not really knowing if I need them or not- I'll probably be on them a year- will it be hard to come off of paxil, and how long- and if I'm on paxil and really don't need them, is it going to harm my system or what type of sides should I be looking for. You get so many sides from the riba and interf., how and the heck would you know what sides are coming from what med.-- HD
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Avatar universal
Thanks for the cheers! It's been scarey enough learning about having HepC in Dec and then to have a medical Dr and staff just treat me like "****". I couldn't believe they lied about submitting a request for a biopsy? Thank goodness I have a compassionate woman that does the referrals in my primary care dr office that was willing to listen to me and do her own follow up in my behalf. Shes the one that told me about writting a request for the 2nd opinion, then I did the footwork on if they accepted my HMO outside of the group plan, and how to write what needed to be stated. I found out today my appt with the NEW Hepatologist won't be until Mar 16 but...It's all good! At least when I do see him,I'll be in good hands with a "top expert" in the field. This gives me alot of "Peace of mind." It's funny, I usually hate going to the doctors, now I can't wait so I can move forward with whatever lies ahead! I wish everyone here well and SVR!!!!
Positive thoughts your way, Annette
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Avatar universal
I started pegysus and copegus on January 8th.  So far so good.  My symptoms have been minor annoyances compared to what I was expecting.  The nausea has been the most disturbing.  I was given a script for phenergen but it makes me sleepy.  Is there something "nautral" or herbal that works?  

Also I am having some achy feelings in the area of my liver.  My enzymes are still normal (they have always been).  Is this from the irritaion - so to speack - from the meds?
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Avatar universal
I had a time w/ my mouth when I was on tx. My doc prescribed Majic Mouth. It worked so good, tastes nasty, but it's worth it in the long run. Good luck, Cindee
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Morning everyone, I have won a battle with the insurance company(HMO)My first visit to a GI was an aweful experience, he was very "pessimistic" regarding everything he said to me. I searched and found a Hepatology dr of MY CHOICE who happens to be the Director of Hepatology at Cedars-Sinai, I found out they would take my insurance, and...are willing to see me! I DID the footwork cuz I definately wanted to get away from the 1st GI. They were caught in a lie to my primary care dr about submitting for a biopsy which was NEVER done. I will still have to wait a week for an appt to the New Dr but...I'm fine with this for now. I was able to"draft" a letter to the insurance co using a form letter from a good site...patientsarepowerful.org I was able to be my own advocate to get what I need for myself.

Sorry I used this to ramble on about myself but...I am just so darn happy to be able to see a Hepatologist that specializes in HepC! I've learned, you need to be your own best advocate and keep going forward to get what you need, even if you think the odds are against ya! Positive thoughts your way, Annette
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BNR
Sorry to barge in here, but just saw this. Wouldn't it be great if we could get this in the U.S.?

Details of Hepatitis C Ex-Gratia Payment Scheme Announced
London, GNN
DEPARTMENT OF HEALTH News Release (2004/0025) issued by the Government News Network on 23 January 2004

Health Secretary John Reid today announced a scheme by which, people infected with Hepatitis C from NHS blood or blood products will be eligible to receive ex-gratia payments from the Department of Health.

Every person in the UK who was alive on the 29 August 2003 and whose Hepatitis C infection is found to be attributable to NHS treatment with blood or blood products before September 1991 will be eligible for the payments.

The ex-gratia payment scheme means that:
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Avatar universal
How did you all cope when getting close to the end of Tx?
I have 2 shots to go and my family are all very excited, but not me.
I am so sick,sick,sick of feeling completley **** I don't know how to get through each day.
I know that alot of you are going through exactly the same thing and I know deep down that I am extremely lucky that I am undetectable and close to the end,but I can't get rid of the thoughts that I just want to stop now.
Every day is either bad, extremely bad or  worse, never good or even reasonable.
Sorry to be so down but I just feel the need to ' stamp my feet' today.
Best wishes
Joanna ( also known as Baldy)
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Avatar universal
People have been fighting for this for a long time to bring the compensation into line with that given to HIV infected patients. The problem is that most of us in the UK did not get this from transfusions etc and are not haemophiliacs. It is a way of separating the sheep from the goats, if you see what I mean!
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I meant 9 weeks to go to my 48th week.
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You sound alot like me. I finished Pegasus in October, I start Infergen and Ribavirin on Sunday.  I felt the same way with joint pain, it went away for about a month after treatment, and now it is back. Mostly in my knees and elbows. I just think all of this treament does wierd things to our bodies that nobody will really know about until years from now. I try to get a massage every six weeks and that really helps. I'll let you know how the Infergen does. Kat
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I think were at about same shot. I do #27 tonight and I do experience the mouth thing, sometime feels raw it took my wife a while to understand it's not her cooking it's me. I think it is getting better.
I'm 3 weeks thru stopping the effexor the last week was ROUGH when I totally stopped had very bad ringing in ears, something called brain shivers which srared me until I read it was normal. My biggest concern was my blood pressure. Before I started tx I got EVERYTHING checked out and my heart had some problems. Heart doc said it would be ok if I kept it down to 110-120 which is normal for me. As soon as I started AD it went to over 140. Brought letter from heart doc to to hep doc and he handed it back to me holding it from the corner by his index finger and thumb like it was dirty and said I always have the option of stopping tx. Thats when I first said to my self HOUSTON WE HAVE A PROBLEM. This guy has a cookie cutter aprouch he will no deviate from.
Wish some of the old timers would step in here about stopping AD's. I think it would helped to have valium or some pot to help along.
My bp is under 110, feel less fatigued and my ambition and manlihood is comming back : ) NO DEPRESSION OR BAD THOUGHTS I'm just pissed at this doc and will just try to get thru to end.




























#
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Sorry about that space, also ment bp is under 120
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YaHoooooo!!!
This is wonderful news. I know I haven't been up for awhile. I'm so happy for you. I know when I got the news it made the rest of the travels easier. You will make it. Keep up with the meds. and you will be fine. <b>CONGRATULASTIONS!!!</B>.
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I know what you mean.  I'm heading towards the finish line w 9 weeks to go to my 45th week. I have mixed emotions right now with it all.  I can't figure out if the first 24 or the last 24 are more painful and difficult.

I'm getting myself a little worked up as my GI will probably want me to do and extension of 6 - 8 on the meds, further to my 48 weeks.

Hang in there  - nothing about this treatment and meds are/were easy, to say the least.



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