high dose riba summit conclusion

under the late responders thread we saw an incredible 77 long posts adding up
to about 50 million words! all of the deranged psycho brainiacs were there
knocking heads and going around in circles. unfortunately, they had to throw me out at midpoint to get the job done but they did it. i would like to say thanks to them and an increbible amount of dogged research and experience. these are the noble scientists.  jimjim, sonicbandaid, flguy copyman, nygirl, bill1954, bthompson4, goofydad, valtod. thanks again everyone. here are the results.

increased riba dosage anytime in treatment quarantees better success rate.
we dont know how much, but we think its a lot.

general thoughts on improving SVR rates
1. high dose INF is proven to increae SVR but has a high cost. it appears that
anyone who does this ends up with permanent sides. dont do it unless you have to.
2. high dose riba improves your numbers with minimal increased sx and no long term side effects if regime is followed. the several caveats are here.
     a. when you increase riba, your body will reach a point where your entire
hemo count can drop to nothing in a few hours, only a blood transfusion can save you then. set up a plan with your doc, do not try this at home.
     b. do blood work every three days (dont even think about trying to cheat this) next, ramp up your riba dosage slowly adding only one pill every two weeks. (dont even think about trying to cheat this either) if you are really serious you can go up to 12 riba a day. i can be done.
     c. talk you doc into using procrit when you start, dont let him make you wait until you are hemo level 10 or less (anemic). use procrit to maintain a 12 hemo level. anything else is simply too painful and its hard on your body. get this part right and you will feel fine.
     d. procrit does quit working after 5 or so years but that does not apply here. procrit, for our purposes has no known long term side effects. thousands of hep treaters alone have used it and ive never seen a bad word about it.
of course, not everyone can use it, but most can.
      e. long term anemia will give you permanent side effects. it is vital
that the procrit keep your hemo at 12 do not let it hover around 10. andiamo
and others cant take procrit right now and they say its very rough.

to all
i think any one and everyone who can, should consider this.
many on this board are already on increased riba.
even going up one pill will give you better chances.
no real permanent side effects known.
for all first time treaters, let me remind you, if you fail in this first and most important attempt, you fall into the black hole. i think about my circle of late responder friends around shot 25 and i wonder which ones of us will
fail. some of us will. quaranteed. it is a sobering thought. increased riba
is a low cost high benefit strategy that should not be ignored. any success
number below 50% is a bad joke. i believe with this regimin my numbers can be
well over 50% and i can live with that.


feel free to flame me for posting more of the same old mind numbing
repetitive posts, ive come to see thats the only way i can tell if
yall still really love me! just kidding of course. have a great weekend everybody.

[cruelworld]

i forgot this:

general ideas on ribavirin blood concentration and dosing

even though we use weight based dosing, it fails some of us because each body
absorbs it differently. we have no test to see how much is in our bloodstream.
even though the science is imperfect, we do have a way to guess the riba concentration in the blood. anemia is a pretty good indicator that you have the minimum dose concentration in your bloodstream. in other words, if you arent taking procrit, it can be argued that you are underdosing riba. to all who are on procrit, you are where you want to be, everyone else could up riba until procrit is needed. once you are taking procrit you can be pretty sure theres enough riba in your blood to smash the enemy, without it, you are probably going to have less success.

[FlGuy]

Or, you can put one live round in the cylinder and spin it.

[Jeff88]

Thanks for starting this important topic and preparing a clear summary.

One issue on timing I believe deserves to be included as well.
Should riba be taken early on in a "shock and awe" manner?
Or is it OK to increase it later in the treatment?
There were some conflicting opinions on this.

Also, is anemia a deciding factor in determining the right riba dosage?
In another words, if Hg is above 10 and one does not use rescue meds, does it mean that riba is underdosed?

Jeff

[Jeff88]

I see in your second post you address the question of anemia, is there stats on the number of people who get SVR without getting anemic?

[ladywhy]

I think it was in my 10 week lab post..anyway you mentioned something about maybe my best prospect was with the ins. company and I didn't understand what you meant so I asked you to explain. I then attemted to convey my situation with that entity and I wasn't sure I was making myself clear. I didn't hear back from you..so I was still wondering what you had in your mind. If you could let me know, I would appreciate it. Thanks
y

[cruelworld]

yall will have to push me a little bit harder to get me to try that.
but, i am leaving town in a few so peace will reappear momentarily.

[cruelworld]

of course start out with high riba, i think the technique involves starting riba ramp up before IFN. you cant just start on 10 riba a day. part of the reason for this whole topic is the fact that many of us were underdosed in the beginning and consequently were late responders. this is a last ditch effort to recover from this mistake. many gastro docs make this mistake. mine did.

the other question is answered by the procrit dosage, try to find a balance,
in this order
1.  hgb 12
2. riba  dosage (desired goal)
3. procrit dosage (something reasonable, middle of the road)


as far as the stats for SVR peole who never got anemia, those would be interesting
but i dont know if those numbers have been compiled. unfortunately, i only serve as a loudmouth, i never really do that much research, see what you can find if youre bored.

[copyman]

good stuff cruel. i think pre-dosing a week or two before the first shot with high dose riba is a plan i may try when i finally treat. I think it is of great importance to get to unde at the 4 week test, no matter what it takes! i have even thought about doubling the peg the 1st 4 weeks. if i can not hold out for the new drugs this will be my plan.

[cruelworld]

i would definately do all of that. you might consider 30% over on INF
since you are not under pressure. while 4 weeks of INF double dose is moderate,
it  still carries tales of permanent sides.

[FlGuy]

The point I was trying to make was that sometimes a 'no' from an insurance company merely signals the 'beginning' of discussion and not necessaril the end of it.  But, as you pointed out that you had been 'round with the insurnace folks and they were firm in their 12 week stand and the coverage limitations.  Your example of injectables being covered by 'medical' is a good one.  I have read here before of people who have gotten a 'no' for prescription coverage have a different result when they speak to insurance about 'medical' coverage as you have.  HCV is a fight not only against the disease but for some of us it's a fight against insurance, employers, a biased stigma and sometimes our own families.

[Proactive]

and why did you feel you needed to start yet another new thread dealing with the identical subject discussed in 77 posts in a previos thread? Is this just an attempt on your part to make things on this furum more confusing than they already are? Now one has to search 2 subject posts for the discussion and your conclusions (which you apparently felt deserved a topic of their own?)...Just don't understand it...Please post any studies related to predosing ribavirin, also studies to gradually increasing ribavirin dosing in response to VL numbers..thanks ;^)Pro

[desrt]

I used to think postings about high dosing riba were dangerous and irresponsible. Now I just try to think of it as natural selection.

[Proactive]

not that I advocate these multiple strung along threads, but it would have been nice if you could have at least posted a link to the referenced "late responders thread" for "newcomers"
http://www.medhelp.org/forums/hepatitis/messages/46745.html
I believe much of the problems on these forums these days is the simple fact that the population here posting has outgrown the forum format. Perhaps the forums need to be broken down further into subcatagories related to the the abbrev. vernacular discussed in another previous thread.
varosebud57
6/8/2007
C1  dosoctaves i like your handle, i guess you are a singer? i did a search of the forum put in keywords of your request and found the following for you. others will probably post the missing ones. now i even know more myself as i only knew the basics. good luck with treatment and welcome to the forum.

believe GI stands for "gastro-intestinal" specialist; same as
gastro-enterologist, only GI is "in English"
Other abbreviations we use:
tx=treatment (generally, here, the pegylated interferon/
ribavirin tx for Hepatitis C, but could be other treatment)
sx=sides=side effects
bx=biopsy (we're usually concerned about the liver here)
dx=diagnosis
Rx=prescription
VL=viral load, usually expressed in I.U./mL (international units)
EVR=early viral responder
SVR=sustained viral responder, as in 6 or 12 months after
completion of tx
fog=mental confusion, bad memory, etc. as side effects of tx
PA=Physicians' Assistant (GIPA/Erin, for example)
ROFLMAO/LOL and variations: Laughing Out Loud or hysterically

rose

FlGuy
6/8/2007
C2  dos a few more
PCR - term used to describe a viral load (how many)test. Many different types of pcrs with varying sensitivity
HGB - hemoglobin, blood component affected by the meds
CBC - complete blood count. used to determine the effects of the meds on several blood components, mainly red and white cell components. "Get me a CBC, stat"
UND - abbreviation for undetectale, when the viral load, if any, is too low to be counted by a pcr
poo - subject of many threads here

[Proactive]

not to mention that some of your conculsions are questionable imo.
"2. high dose riba improves your numbers with minimal increased sx and no long term side effects if regime is followed. the several caveats are here." To even make this statement is irresponsible IMO...High does riba and minimal increased side effects shouldn't even be in the same sentence.
(..and your several caveats are what keeps drugs from being approved in the first place)
and come on, now you want to predose procrit to?
"talk you doc into using procrit when you start"

"many on this board are already on increased riba" actually I only know of a very few on this board on higher than weight based dose..I think Bill is,.......... and I am---1600mg daily on my 170# frame
and ready to through down!!! (lol) which brings me back to your "minimal increased side effects " comment (vbg)....

[cruelworld]

i have no other suggestions except to call "be in charge" helpline and ask them to
get you to the free meds department. there are other resourses too, anyone here got any leads to free meds? update on your progress.

[Proactive]

Hi Cruel, I just feel that your conclusions are not reflective of the opinions given to you on your "other" thread,more like continued opinion
...as to me
"you have made it clear
that you dont feel good, and i am sorry to hear that. i am also sorry if i made you feel worse. i do hope that you start feeling better.
i have been wanting to ask you though, how much worse are the sides on 8 riba day? and what is your hemo level? im starting 7 a day tomorrow. how long did you ramp up to 8 a day? what are your procrit levels? what shot are you on?if you dont mind i would appreciate it if you have the time to answer these questions. gimme some love proactive, its not all that bad."

I didn't mean to give you the impression that I feel bad, probably no worse or better than the next fella (or gal).
My sides haven't increased to badly with my increased dosage of riba (increased at week 8(vl 2000) to 1400 and week 13 (vl 256) to 1600 and continuing)
my base hgb was above 16 (I'm a male smoker,which tend to have a high base) at treatment beginning and has held above 14 throughout. Did shot #33 on thursday..
sorry used up my alotment of lovin for the day waxing my porsche.....(vbg)

[cruelworld]

i expect you to save me up some love for next time then.

of course i had to throw out all the contradictory info!
how else would anyone buy in! HA HA HA HA HA HA

although, i will argue strongly that the overwhelmng concensus of the summit was presented accurately, with of course my slant, whatever that me be. maybe my
slant would be characterized like this - ITS FREE  ITS FREE. maybe i pushed that a little much, but to my great surprise, we find out, that you are not even taking procrit and cant feel any (or much) extra pain. that spells free to me! you must have some badass bone marrow baby! i think you are an exception though, the rest of us will have to deal with procrit, although i could be wrong on that, maybe many people can stand it easily, that would be great news. in any case,
it looks like you did a one week per pill ramp up, and just to be super safe my summary plan doenst recommend that fast ramp up. i guess your doc did it that way because the target was 8 a day. the great news is that it aint killin you.
(any more than usual) i forgot to ask  bill1954 (hes on ten a day with extra INF as well) about his sides, maybe he will see this and tell us.

you sure are using up a lot of my time with your chicken little complaints,
we may have to go to the mat soon if you keep this up.   BEWARE!

see ya on the next round!

[ladywhy]

Thanks for the clarification. I thought you might have had another idea. Pull a rabbit outta your hat. ah well..I haven't given up yet. Yea, this can be a battle on so many fronts. Just gotta take it a "day at a time."
All the best to ya!
Y

[cruelworld]

i agree with some af your criticisms but i personaly think that my 5 new threads in the last 3 days is not excessive (one on ladywhys behalf), if the board feels it is excessive, im sure i will feel the burn of skilled flamethrowers. also, i am sure that the condensation of 50 million words needed to be brought into a nice little summary, with its own new thread. if this is that horrible of a reason for a new thread, yall might have to test my flamehandling capability.  
i thought about disclaiming all my statements with a warning, but ive decided thats what your job is (and everyone elses).
to shoot down everthing you have a different believe of. this  medicine is like religion, its hard to absolutely prove much of its behavior. i am glad that you spoke up though because even though you sound as if you are agaist high riba dosing,
you are practicing it in a big way. you are the best example in the world to spread this proven belief.  i encourage you to challenge this summary and any of my posts and im glad you did.
keep it coming, we havent heard from you in a while. you have made it clear
that you dont feel good, and i am sorry to hear that. i am also sorry if i made you feel worse. i do hope that you start feeling better.
i have been wanting to ask you though, how much worse are the sides on 8 riba day? and what is your hemo level? im starting 7 a day tomorrow. how long did you ramp up to 8 a day? what are your procrit levels? what shot are you on?
if you dont mind i would appreciate it if you have the time to answer these questions.
gimme some love proactive, its not all that bad.

[cruelworld]

first id like to say that im so glad you chimed in with a totally contrary opinion. you didnt expound on it but thats ok. i only see your posts rarely
and im glad you made it to this thread, because you remind me of an important detail not specifically mentioned but compensated for already in the summary. it is the issue of small females being particularly vulnerable with this strategy. we all know what happened to nygirl. from what i understand she ramped up too quick with insufficient monitoring. then she went into severe anemia, (already clearly described and warned against in the summary)  i dont know how this happened but it turned out to be a big mistake. we see people all over this board who had a bad experiece with one or more of the drugs and now they tell everybody to close up shop and go home. the medicine is no good. and it truly was no good for them, but not for the world at large. if this summary were that glaringly dangerous and irresponsible
i would expect someone like sonicbandaid (i dont think he has many peers here) to
correct my sloppiness. maybe we will hear from him soon, lets see.
in the meantime, i would bet you that you would have trouble finding a good liver doc to say that the proposal is dangerous and irresponsible, but maybe you can. send us to school, thats what where here for. thanks for your input and hope you  are not hurting too much.

see ya soon

[cruelworld]

no one is allowed to read this unless you are desperately in need of
severly pitiful entertainment. desrt, i dont know if you are, but im hoping so.

in reference to your part about natural selection, i have no way of knowing exactly what you meant by that but it doesnt matter. heres the way i see it.
natural selection hell yes! heres how it goes, if i fail, everyone including many
unknown newbies will have to put up with me for the next 500 or so years! and that thought even scares me. imagine it, flamethrowing everywhere and newbies being terrorized just for one little piece of info! oh the humanity!

i love yall

[Proactive]

"it looks like you did a one week per pill ramp up, and just to be super safe my summary plan doenst recommend that fast ramp up"
No, that is not what I wrote, this is what I wrote "(increased at week 8(vl 2000) to 1400 and week 13 (vl 256) to 1600 and continuing)"
and note, my increase in riba was in response to my vl numbers (base vl was 2.4 M), and was not my idea, it was my hep docs idea(of course I was in agreement)..again note, it was in response to realtime vl and bloodwork numbers, not in anticipation of them...

bright eyed, bushy tailed and full of love this morning....;^)Pro
(back to hiding)

[cruelworld]

before its too late, let me add an important technical detail that mostly wont apply to anyone here. if you plan on doing the ultra high dosing 12 to 18 a day,
before your doctor approves it, he will discover the fact that if you have heart disease or 4/4 cirrhosis you wont be eligible.  im pretty sure that dosing 10
a day or less has no such restriction, but when my doc calls the study leader
lindahl (next week) i think i can get that lesser dosing info confirmed. its impossible to put everything into a summary but this is is a key restiction
worthy of mention here.

[Bill1954]

I

[cruelworld]

wow, what wildly good news, no rescue drugs and 10 riba a day.
extra side effects, minimal
yee haaa fannnnntastic!
this is my first day for 7 riba a day and i feel nothing yet.
so far so good.
thanks for the other info too.

[jmjm530]

Kudos for getting your doctor to contact Lindahl and please keep us posted as to what she says. Among other things you might want your doctor to ask her: (1) Does she have any data/SVR statistics/studies beyond the original 10 (from pilot study) she can share; (2) Has her "pharmacokinetic" formula (for dosing riba by renal function versus weight) been refined to the point where she's confident enough to use it in a treatment situation. (Her original studied suggested the forumla needed to be tweaked; (3) Any study data/anecdotal information in high dose ribavirin intervention *later* in treatment, as we've discussed in your case; (4) Are there any doctors in the States that either she's working with or is using her protocol and are their any labs in the states using HPLC testing.

-- Jim

[jmjm530]

From Lindahl summary:
The results from this study suggest that the anaemia induced by ribavirin depends primarily on the concentration of ribavirin, and not on the dose per kg bw. This lends further support to the idea that ribavirin should be dosed according to renal function.

[desrt]

I find it interesting that most posts re: riba concentrate on its hemo sx.

Ribavirin is an RNA mutagen. The way I understand its synergistic effect w/IFN (and why it doesn't work alone, while IFN sometimes does) is that it mutates the heck out of RNA lifeforms, and humans, being (mostly) DNA based aren't *as* effected. The caveat comes with the (mostly).
If you ever check out the package insert that comes with your riba, you'll notice a whole lot of emphasis put on the "use two different types of birth control and don't get pregnant or get anyone pregnant" warnings.
Human reproduction is only the most obvious part of the human body where RNA comes into play.

RNA
DNA
mRNA

I'm interested in what high-dosing riba advocates think about the possible long-term side effects (to the individual) are going to be, above and beyond the hemotological.