Hey,
I'm thinking about another round of TX and the research that I've seen suggests that best hope for SVR is achieved if you can clear the virus by week 4. I cleared at week 12 during the first round and was clear for 48 weeks but relapsed later.
I've read about "Elmo's Method" which he described as follows:
"My tx began with daily Infergen until the beginning of the third week when I also started doing weekly shots of Pegasys. While continuing Pegasys, I stopped the Infergen to begin the 5th week of tx. I did one more week of daily Infergen at about the 7th week of tx and continued Pegasys til I'd done a total 48 weeks of tx. From the beginning, I did 1400 mg/day Copegus til I got to the 6 month point and reduced the dosage to 1200mg/day. I also took Amantadine (? dosage) for the first 10 months of tx."
I'd like to hear from others who have tried this (and other) methods to combat the dragon. I'd also like to know how you talked your doc into the regimen.
Thanks.
TX-012 - 23 Oct 2007 05:09 GMT
> Hey,
>
[quoted text clipped - 7 lines]
>
> Thanks.
If I were in your shoes, and if your liver was okay or semi-okay, I'd
wait until we have Schering Plough's boceprevir or Vertex's telaprevir
on the market & then try again...Or see if you can get into a clinical
trial...
You might also wish to contact him & seek his advice: http://www.hepatitisdoctor.com/
amzolt - 23 Oct 2007 09:32 GMT
...
> You might also wish to contact him & seek his advice:http://www.hepatitisdoctor.com/
I'd love to see a few judgements on this site.
I looked it over and it's interesting but I don't have enough
experience to judge it for value...
~ Alex
greyhackles - 23 Oct 2007 14:51 GMT
>...
>> You might also wish to contact him & seek his advice:http://www.hepatitisdoctor.com/
[quoted text clipped - 5 lines]
>
>~ Alex
When I was considering treatment I came across that site, and pored over
everything it had. Today, after many hundreds hours of looking for information
on HCV all over the web, and a couple of years post-tx, in my opinion, Doctor
Cecil is *The Man* when it comes to the treatment of HCV. You can take
everything he says as gospel...
Cheers
/greyhackles
eileen - 23 Oct 2007 21:58 GMT
> Hey,
>
[quoted text clipped - 7 lines]
>
> Thanks.
Hi Stretch,
I just finished the "Elmo Method". I did daily infergen for nearly 6
weeks along with 1000mg daily of Riba and 200mg of Amantadine. The
infergen wore me down, then I started having tremors that scared my
husband and I so after seeing me my NP, she stopped me because at that
point I couldn't even put the cap back on the water bottle. I then
went to Pegasys along with the Riba and Amantidine. I ended up doing a
total of 70 weeks. I had to stop for 11 days because of an eye problem
that only turned out to be an infection. Once that cleared up I began
my count again somewhere after I had been on about 8 weeks.
I was a non responder my first time around with another doctor. After
that I went to the same NP that Elmo went to. Her name is Donna
Fannelli and she is in Milford, NJ which is just west of Newark Int.
Airport. She was great and also does reasearch on HCV. I live about
1 1/ 2 hours away but she kept the visits to the minimum but we kept
in contact weekly by phone. She really kept an eye on all my labs,
because I also lost a kidney to HCV 8 years ago. I just did my end of
treatment labs today. I didn't have to talk her into the treatment,
infact this was how she treated HCV, Elmo just upped his dosagaes by
using infergen and Pegasys together.
I feel better every day, except for feeling sleepy all the time still.
eileen
greyhackles - 24 Oct 2007 01:06 GMT
>> Hey,
>>
[quoted text clipped - 40 lines]
>I feel better every day, except for feeling sleepy all the time still.
>eileen
Best wishes for totally clean labs, Eileen!
Cheer
/greyhackles
john - 24 Oct 2007 18:37 GMT
> >> Hey,
>
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> - Show quoted text -
Pulling for you Eileen.....................john
eileen - 26 Oct 2007 19:19 GMT
> > >> Hey,
>
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>
> - Show quoted text -
Thanks John, your treatment is a lot harder than mine was. I hope we
all get good results.
eileen
eileen - 26 Oct 2007 19:12 GMT
> >> Hey,
>
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>
> - Show quoted text -
Thanks Grey,
I appreciate your good wishes. Your postings to this group have
helped many of us, I hope my brain returns more than anything!!
:) eileen
john - 24 Oct 2007 18:35 GMT
> > Hey,
>
[quoted text clipped - 32 lines]
> I feel better every day, except for feeling sleepy all the time still.
> eileen
hi eileen,
Yes Donna is the best.She is in Millburn, NJ
eileen - 26 Oct 2007 19:15 GMT
> > > Hey,
>
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> - Show quoted text -
You're right John, Duh, Where is my brain, has anyone seen it? ;)
eileen
Thip - 23 Oct 2007 23:28 GMT
> Hey,
>
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>
> Thanks.
I tried the Infergen my third time around. The time I was on it is very
hazy, because I was either sleeping or walking around feeling like I'd just
landed from Alpha Centauria. I could not handle the sides (I'm widowed, no
help here at home and I have to work), and after throwing the riba-rage
tantrum of the century and throwing a hammer across the yard, I gave up. I
can't really even remember how long I was on it, but I THINK it was 8 weeks.
Maybe 6. Anyway, it was one of those deals where I had to make a decision
between quality of life and quantity. I sure had no quality, and there
wasn't any guarentee I'd be rid of the dragon after 48 weeks or so. At 50+,
I don't have the luxury of throwing away a year of my life.
My doctor simply went for the idea because I was out of options. I said, "I
want to try Infergen" and he prescribed it. Since his office was 60 miles
from here, I went to the local hospital (very small town) to have my blood
drawn, and they faxed it to him. The rest was up to me. More support--a
spouse, a doctor closer to home--might have made a big difference, but I'll
never know for sure. Would I try it again? I don't know. My new BCLD
hasn't mentioned it or anything else. He's just trying to keep me stable
for a couple more years until something else comes along. If you can afford
to wait, it might be a good idea to hold off.
john - 24 Oct 2007 18:32 GMT
> Hey,
>
[quoted text clipped - 7 lines]
>
> Thanks.
hi stretch,
I did that same treatment from elmo's dr.cleared in 12 weeks then
relapsed.Now i am at week 37-of 72 with nightly infergen,1200m
ribavirin.I am doing 1 shot a month of pegasys in addition.
Stretch - 25 Oct 2007 03:12 GMT
>> Hey,
>>
[quoted text clipped - 12 lines]
> relapsed.Now i am at week 37-of 72 with nightly infergen,1200m
> ribavirin.I am doing 1 shot a month of pegasys in addition.
Wow. Good luck John.
john - 25 Oct 2007 15:41 GMT
> >> Hey,
>
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>
> - Show quoted text -
Wow. Good luck John
Thanks Stretch.Same to you as well.