Responding to May 26th dialog for puckertoe.
Do you recommend taking extra riba for nonresponders only or do you
recommend it for everyone if they can handle it? Sometimes to much info
can be dangerous in the wrong hands:-)
How do you get doctor approval?
I am sitting on an extra 6 weeks of meds. I refilled my scripts event tho
I was off tx. You never know when you might lose coverage!
Please advise?
Sue
I don't recommend anyone take anything 'extra'. What I do recommend is
that everyone take a sufficient amount of riba in conjunction with a
sufficient amount of interferon to get themselves an SVR. I like
Amantadine too. The definition of sufficient? There's evidence taking
more riba than what has been recommended in the past is more
'sufficient', and that's been my experience. Take it from there.....
:-)
Elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
>Responding to May 26th dialog for puckertoe.
>Do you recommend taking extra riba for nonresponders only or do you
[quoted text clipped - 5 lines]
>Please advise?
>Sue
For my part, I can't make recommendations, I'm thinking out loud in public,
hoping I might stumble into something that others might find worth asking
their doctors about, and perhaps raise the odds of successful tx.
And I don't think we've been speaking about non-responders in this thread (at
least, I haven't). Puckertoe had a good EVR but apparently relapsed a few
weeks after completing what had become a non-standard course of therapy.
There's still so little definitive understanding of this disease and how the
combo therapy actually works - when it works. You'd think given how many
people are HCV+ that a lot more would be known by now, yet it's all still a
crap-shoot.
What seems clear to me is that One-size-fits-all doses are becoming history,
and Riba doses have been increasing. A few years ago, I'd have been on 800mg
per day, even with my weight at 231. Instead I was put on 1400mg/day and have
stayed right there, even as my weight has dropped to 200.5.
The study that was referenced here showed some huge results from massive Riba
doses on difficult to treat patients. It's a single study and the cohort was
only a few dozen patients, and no doubt there are other studies that claim
more Riba doesn't help, but if one accepts the study as valid, "more is
better" seems to be the case. And the oft-quoted Dr Cecil seems to believe
that "longer is also better" and has demonstrated some success with hard to
treat patients by doubling the duration of therapy...
/greyhackles
Canadave - 29 May 2005 13:57 GMT
<sorry for duplicate post...posted in wrong place below>
I'm 200lbs and on 1200mg/day...does that make sense? (Not that my doc's
about to change it.)
D
>>Responding to May 26th dialog for puckertoe.
>>Do you recommend taking extra riba for nonresponders only or do you
[quoted text clipped - 43 lines]
>
> /greyhackles
Cactus Jammies - 29 May 2005 15:38 GMT
Yes that is standard Riba dose (greater than 85 kg body size) in pegetron
tx. Should say so on the pamphlets that came in the Schering box.
Cactus Jammies
///////////////////////////////////////////
> <sorry for duplicate post...posted in wrong place below>
>
[quoted text clipped - 52 lines]
>>
>> /greyhackles
Canadave - 29 May 2005 17:05 GMT
> Yes that is standard Riba dose (greater than 85 kg body size) in pegetron
> tx. Should say so on the pamphlets that came in the Schering box.
Yeah, I knew that, but wondered if other research or opinions point to a
higher dose.
Thanks,
D
> ///////////////////////////////////////////
>> <sorry for duplicate post...posted in wrong place below>
[quoted text clipped - 56 lines]
>>>
>>> /greyhackles
burningdaylight - 30 May 2005 03:03 GMT
Thanks Guys,
I know that you are not doctors and don't want to commit to giving
definite medical advice. I can read between the lines and make my own
judgements from what you have stated.
If and when I restart tx and my blood tests are okay I may pop one extra a
day if I'm not responding the way I think I should be.
Another question, what about thyroid and anemia etc? If they are going to
go south, is dosage involved?
Sue
greyhackles - 30 May 2005 03:20 GMT
>Thanks Guys,
>I know that you are not doctors and don't want to commit to giving
[quoted text clipped - 5 lines]
>go south, is dosage involved?
>Sue
I reckon pretty much every side is moderated by dosage, I can't see anemia and
hypo- or hyper-thyroid being different.
Anemia during tx can be caused by *both* combo drugs. The IFN can suppress
bone marrow - aplastic anemia - so RBC production drops; and the Ribavirin can
weaken the walls of red blood cells to the point that the cells lose their
integrity (aka "exploding blood cells") - which would be hemolytic anemia.
As for thyroid complications, I expect that'd be due to the IFN pretty much
exclusively, so bumping the Riba may not have a deleterious effect there.
Some may disagree, but I would advise you to consult with your BCLD before
upping the dosage of either combo drug. You two should be able to reach some
agreement that makes you comfortable while keeping him informed. Upping the
drugs isn't "free" wrt sx, and your doc is going to need to stay on top of
your labs.
Cheers
/greyhackles
elmoemerson@webtv.net - 30 May 2005 14:28 GMT
Re: Hey Elmo&Grey-Increasing riba?
Group: alt.support.hepatitis-c Date: Sun, May 29, 2005, 10:03pm (CDT+1)
From: burningdaylight@private.com (burningdaylight)
Thanks Guys,
I know that you are not doctors and don't want to commit to giving
definite medical advice. I can read between the lines and make my own
judgements from what you have stated.
If and when I restart tx and my blood tests are okay I may pop one extra
a day if I'm not responding the way I think I should be. Another
question, what about thyroid and anemia etc? If they are going to go
south, is dosage involved?
Sue
/////////
My thyroid went south on a normal dose of combo drugs during my first tx
and I was anemic enough to have been prescribed Procrit although the doc
wouldn't write the scrip. Even with a smaller dose of riba on my second
bout with the dragon, I became anemic and did one shot of Procrit a week
starting about the 18th week of tx. The 3rd trip to the dragon's den
and the heavy interferon and riba barrage got me started on 2 shots of
Procrit a week starting in the third week of tx. My hgb dropped 5
points during the first couple of weeks.
Elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum