ANOTHER UPDATE

[DH Bill]

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.

[Petey7]

I had the same message on my phone this morning about good news. Called back and to my surprise the nurse said the virus was undetectable at 12 weeks. That news makes it much easier to think of the weeks ahead. At least we know we are getting results and hopefully it will last.

[Tess Marie]

I am wondering if anyone who has relapsed or gone off of therapy still experiences joint ache? I finished therapy in Aug. and felt incredibly well for about 3 weeks and then the aches & soreness are back. I am beginning to wonder if these are not a symptom of Hep C? I will be starting therapy again in May, this time treating with Infergen/Ribavarin. Has anyone been on this combo. My Hepatatis Specialist has had more success with this treatment for relapsers. For those AD questions, I started before therapy, cutting back on the dosage gradually at the end & had no problems. I feel they helped me get through the 1st. round. I will definitely continue with the 2nd. round of treatment.

[Tess Marie]

I am wondering what therapy Dr. Johnson has prescribed for you and how you are doing? If you want you can e-mail me at ***@****

[Ambush]

Bill, good news.........let us know when you verify!  I also will "assume" that congratulations are in order.  I hope that once all your insurance woes are solved, that the stress will be less and your rage will subside.

Petey 7, That sweet news should sure help you keep moving forward!  Good for you!  Congrats!

ambush :)

[GALLIUM]

eagerly awating the week of feb 16th thats when i finaly start the run to clear.
i realy hate that ya'll are haveing trouble with your dr's nurses,(try leaving a box of candy one day for no reason).
i guess i'm lucky in that the nurse i will be seeing is the
same one i get chemo for leukeamia from so she and i are old friends(i always bring home made goodies to the chemo room).
also the oncologist i use is a dr. i worked with for about 10 years so good to go there.
beating the dragon has to be the first thing and most important thing in our lives.
if your getting grief from treatment team have you tried talking to your dr. ?
i cant hurt and might help.
best of luck to ya'll see ya on the train around the 16th.
2 more work nights then vacation starts heading to micky world next week for a blow out before treatment. will think of ya'll when screaming my head off on a roller coaster.

[jonihs]

The only thing that worries me is if you quit w/out your Dr. permission. Insurance companies are sometimes very  picky. "If you can't follow  yourDr. on this, how do you expect to get well?" If you  didn't have your Dr.s permission,see if you can have him add permission to your file and explain to him why. I'm glad you're doing better and keep heading that way!!  Joni

[Steve']

Howdy Bill thats great news about the getting off AD's, so what's going on with your Tx are you still doing the Interferon  + Riba, have you missed any because of their stupidity ...

My personal opinion about the AD drugs is they should be used for the right reason ... for me I think way too many people start on them like you did Bill on their say so, they say ok you start Tx I want you to start AD's 2 weeks before just like some kind of routine safety net ... well not everyone experiences depression in fact I think its under 50% that don't ... sometimes everyone gets a bit down feeling & thats "Not" clynical depresion .... I think that those AD drugs can create even more problems for people who are not needing them ... I did 26 weeks without anything in that class 2 weeks left to finish line, No I don't want a medal LOL & I realise some truly need these drugs

hahaha ok I'll get off my soap box now heppers, surely there are others that agree with me .... addiction to any Benzodiazapines is a horrible thing, previous experience, I was taking them for 6 weeks in hospital years ago but when I got out of hospital & never took them anymore I had all sorts of major problems & didn't know until weeks later why I was so freaked out & thought I'd dropped a few marbles <b>.....Steve.....</b>

[new-sojourn]

Steve', I agree w/you that AD's are not the panacea for everyone.  And many people don't get depressed on tx, esp if depression and anxiety are handled w/exercise, nutrition, herbs and meditation/prayer.

I wanted CURE so badly and was so grateful to have patched together a no cost treatment plan, I never dreaded, or hesitated, at each pill and each injection (3Xwk).  Only the past depressed me, not the future or the present.

Petey7:  I cl'ed @18 days.  The rest of the time zipped by, b/c I had the prize in hand and was only insuring that prize by moping up any lingering hep c virus hangin' around.

[cindee]

DhBill, I pray that the answer will will be SVR for you!!!!! Hang in there...if the rage gets worse...get some Zyprexa. It helped me! Many Prayers for you tonite! Cindee

Petey7, WOW GREAT NEWS!!!!!!! Hope you continue in the SVR direction!!!! prayers to you and all, Cindee

[DH Bill]

I guess some of you have Not been reading or listening. The first 6 to 8 weeks of tx went good I lived with whatever but when I complained about insomnia he reluctently gave me trazadone wich I had a reaction to. I asked for Ambian as I had heard such good things he said he had never presribed that before so he reluctently gave me 15-5 mg tabs for occasional use. I asked for mail order so wouldn't have to hastle with this every month cause I have been told to call each month after blood draw to make sure my peg/copeg are on time the pharmacy has always had to fax additional reminder to get it  on time. Every month this goes down to the wire. I have been told the last several times that I always have the option of stopping tx as my liver isn't that bad off.
AS to effexor that is his drug of choice no other. I firmly believe if I told him I wanted to stop effexor he would say my only choice would be to stop tx. He refuses to do mail order cause he says he needs to see me eyeball to eyeball each month to make sure I'm not depressed. I'm not depressed, a drug addict or alcohlic. All of my tests have been very good he said I was in the top 10% of responders The head HVC nurse just resigned last Wednesday would not say why. She did tell me she didn't aways agree with doc. The end of every meeting with him if I disagree or question is "you can always stop tx" I had a lot of faith in him from others in medical profession he was suppose to be the Golden Boy from Berkeley Calif. I will talk to him again next week but very carefully as he could opt to stop tx even though all my stats are good and appear to be still clear at 24 wks.

[harley dude]

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

[harley dude]

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

[n2cats15]

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?

[cindee]

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

[eyehavegr8life]

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

[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:
• people infected with Hepatitis C will receive initial lump sum payments of £20,000.
• those developing more advanced stages of the illness - such as cirrhosis or liver cancer - will get a further £25,000; and
• people who contracted Hepatitis C through someone infected with the disease will also qualify for payment

Mr Reid said:
“I'm pleased to be able to announce the details of this scheme today.”

“I felt it was important that English Hepatitis C patients should receive these payments on compassionate grounds. It's clear that providing assistance is the right thing to do.”

“I believe that these are fair and reasonable payments and I hope that they will help alleviate some of the problems people who have been affected in this way are experiencing. I'm also glad that people who receive awards from the scheme won't have the worry of losing their social security benefits as a result.”

In addition to people currently infected with Hepatitis C the scheme will also include people who have cleared the virus as a result of treatment. Those infected as a result of the virus being transmitted from someone who was infected from blood or blood products will also be eligible to receive payment as will people who were infected with HIV as well as Hepatitis C.

The Department is currently setting up the independent body that will administer the scheme and arranging for the necessary benefit legislation to be amended. It is hoped that the scheme will start operating in April this year. Payments to eligible claimants will follow soon after that.

The Health Secretary said:
"We have ensured throughout our negotiations that the scheme would be easily accessible for eligible patients. It's important that people making a claim are not going to be bogged down with bureaucracy.

"We are pressing forward with the essential work that remains to be done in finalising the scheme, including how the application process will work for awards. We will be working with organisations such as the Haemophilia Society and Hepatitis C Trust on this to help ensure the procedures are as user friendly as possible."

A publicity campaign is being planned with the relevant organisations to ensure that eligible claimants know how to make an application to the scheme.

Source: DEPARTMENT OF HEALTH

[jevs2]

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)

[DownThisRoad]

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.

[DownThisRoad]

I meant 9 weeks to go to my 48th week.

[Kat001]

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

[DH Bill]

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.




























#

[DH Bill]

Sorry about that space, also ment bp is under 120

[OkieJim]

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>.

[britgirl]

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!

[lackalustre]

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.....

[britgirl]

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.

[scruffy]

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.

[eyehavegr8life]

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

[jevs2]

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 )

[BethUK]

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!

[britgirl]

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!

[britgirl]

I've just scrolled through and see you've got 5 weeks to go...getting near the end, then. Are you a 3a?

[jevs2]

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 )

[BethUK]

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!