Need Advice, Another 48 Weeks or Not?

[dan221]

I am 48 years old and I was diagnosed with HCV in 1997, 6 months after my wedding.  My husband was very supportive as I did the 48 weeks of treatment. Unfortunately, the virus was not cleared.  My big dilemma is whether to undergo another round of treatment.  I suffered the dibilitating fatque, headaches, etc., and had to take off 3 months from work.  I have only been on my current job for 2 years and very few people know about my HCV.  I take very good care of myself and I just don't know if another round of treatment is going to make a difference since I have Type I.  I would just like your feedback.  Thanks,

[sands3]

dan221, you came to the right place for advice. There are many stories of success here to keep one focused on treatment as the only alternative. If you had treatment in 97-98 then the Pegasys Co-Peg was not out yet, where you take Ribivirin tablets daily and a shot once a week of interferon. It"s the latest treatment so give it a try. I know of a guy on here who is a type I and showed negative at 11 weeks, also my viral load has dropped from 3570000 to 1130000 since having had 10 weeks of treatment and being off of it for 10 weeks. Statrted again 3 weeks ago today. All you can do is try and pray that the sides are less severe, they have been for me the second time around. It will make a difference.
Shawn

[todd]

Hey Dan221.
If I were you, I'd ask my doc about pegasys/copegus. You can have a pcr done at 12 weeks while on pegasys, you should have a 2 log drop in load by then. Schering recommmends waiting till 6 months before testing load.
At least with pegasys, if it's not working, you'll only be on if for 3 months, rather than 6.
You might want to try the new combo meds. They may well work, even though your previous monotherapy didn't.

[dan221]

Thanks, I will ask my doc about that.  I didn't realize that I would be off in three months if I didn't respond.  I guess he forgot to tell me that part.  

[Jackie]

dan221, welcome.

Did you respond at all to the last tx? Have you gone through the biopsy and other test again lately? If so, how are the #?

Tonight is shot 37 of 48 for me and all in all the sides have been managable. I think the last month has been the hardest with fatigue, stomach upset, dry skin, achy eyes, loss of memory(brain rot) and MOODY.      

My viral load was 3.5 mil and ast/alt were around 90 if I recall correctly when I began tx. I cleared around 10 weeks and just had bloodwork done this week. Ast are at 11/alt are 9. If it comes back after tx I will do tx again.  

We are here for you. And I think it is wonderful to have a supportive spouse. It helps to talk to people that are going through what you are. My hubby has been here for me all the way as he vowed, but I am so glad I found this board as I can now relate to HCV better. Not to mention the new friends.

Best of luck to you......

[vicki smith]

Why on earth would any of you want to try a second round of poison? Peg will NOT get rid of your type 1 hep. Please stop the madness. What  kind of insanity is it to say if it comes back I'll take the treatment again! WHY? It does NOT work, HELLO. Move on to some form of alternative treatment until they come up with something that works. You really are blindly being led by your doctors into this therapy. Show me anyone one year after treatment for type one that is hep-free. Just one,anybody,anybody? Yeah, i didn't  think so.

[Patti]

Hi Vicki - so GLAD your attitude is so possitive. Try to smile

[vicki smith]

I am very positive. I am positive peg does not work on genotype 1.  It breaks my heart to read all these stories of people suffering for 48 months to be hcv undetectable for 5-6 months and then it "comes back". It never went away- it was only hiding from the toxicity of the interferon. The American Liver Foundation would never recommend you retreat a "non-responder". Research the numbers and see how many people have suffered needlessly with this treatment-that's all I ask.

[Jackie]

Vicki, Did you have hep C? What did you do for it? It had to have worked for you if you can come here and be so bold as to tell us we are wrong for our choices in tx.  

It is my choice what I put into my body as it is each of us including you. You have your right to your opinion as do I mine. You come here to tell me I am insane for my choices? Why? Do you think I care what you think?

You come here slamming us for our choice in tx but you bring nothing helpful to the table? It is sad that you feel the need to put others down and be so negitive. That is not a healthy, healing attitude.

[sands3]

JACKIE , so glad to hear it seems to be working. My viral load went from 3.5M to 1.1M since being off treatment, (Imagine that) and the first test 8/03 was AST 56 ALT 114 to the latest 2/04 being AST 121 ALT 269. The numbers are confusing seeing as how I was off tx for 11 weeks. Somewhere on this board I read that the real telltale number is the LFT (?) ones. I am on the fourth week of my second try and the sides are not as severe as they were with the thryoid meds I used to take. The RAI procedure cured the thryoid problem so no more meds there (as yet). Hydrating and eating frequently with the meds is working wonders with the way I feel. Of course it can't be all good news, after two shots my blood work says my WBC is 2.8 and platelet count went to 109 and the absolute neutrophiles are 865, those are the things that caused the Doc to abandon tx the first time. Of course maybe this time without the thryoid meds he will recommend alternative meds instead of give up.
And Vicki, chill out ,there is a lot of angst in you, with that attitude I'm surprised you can get out of bed in the morning.  Do some more research and don't give up or give in, some of us want to live and will pay the price.
Shawn

[Jackie]

Shawn, I am so glad you feel much better this time around so far. What is  it they did to your thyroid? I am not sure what an RAI is. I hope the Dr will entertain the alt for the reds/whites.

Take care!

[willy]

Vicki:  I was not able to find anything at the American Liver Foundation yesterday to substantiate your claim.  Perhaps you have a link?  Any search that I have done indicates that genotype 1's (and I am one ) have a 45-50% chance.  That is in the average, of course.  I happen to believe that there are things that one can do that might improve ones odds; the use of alternatives, good diet, et al.  My opinion is that there are many protocols that can raise our odds of clearing (raise it above that 50%), and having done that, can maintain that status.  I have read of people that failed to clear with monotherapy and tried the new form and succeeded.  My opinion is that ANYTHING is possible.  I am not, and have not been on TX.  I am on alternatives.  I also believe that it is very important for people to believe in their treatment.  The disease exists just on (and sometimes beyond) the threshold of our ability and modern medicines ability to defeat it.  We need to support one another .......and each others treatment.  
         If you have information, links, opinions, or proof of assertions......they are all welcome here.  I understand that you are trying to open peoples eyes.  Most of the medical information that I see gives genotype 1's success rate at the percentages I mentioned earlier.  In monotherapy it was closer to 25%.  I would surmise there are people that failed monotherapy and succeeded on the latter combination therapy.

Best,
Willy

[jjn]

  I've been through the previous combination interferon therapy, and have been on the Peg-Copeg for 42 weeks.
 And I don't understand how someone can be as cold and callused as to be able to tell someone what don't work.    
 Perhaps they should tell us about their treatment, what worked for them.

 And  as far as alternative treatments,
if it clears the virus,
brings you back to some form of normal life.
 I say go for it.

I'm going to be throwing punches
all the way up to the time
they nail the lid on my coffin.

[dan221]

Jackie:  I did respond some to the first round of treatment.  Although I don't remember the numbers as its been several years, I know that it did come down a considerable amount, but not near enough to clear the virus.

In my first biopsy in 1997, my liver was in lower stage one.  My last biopsy was in 2002 and I was still in stage one, just closer to stage two.  

My doctor is waiting for the completion of a trial of non-responders that have been doing a double dose of peg/intron.  When results are in and if the percentage of responders have gone up, I'm sure he will  recommend that treatment.  Can you imagine the horror of a double dose?  I can, because it seems like yesterday that I was doing the first treatment.

I told my husband that I found all you wonderful people and I wanted opinions from people who can relate.  No one can knows what it is like unless you have been there.  He just knows he wants me to try the treatment because he wants me around in 20 years.  I just hope that when the day comes that the doctor says "Okay Debbie, this is what I want you to do", that I have an answer.  

[todd]

Hey Debbie, have you any more info about the nonresponders trial that your doc was referring to?