Should I reduce riba by 200mg.?

[amirtracy]

Hi everybody. Quick question. my hgb was 10.2 2 weeks ago. I go for labs tuesday morning. having a hard time catching a good breath and am exhausted. i've lost enough weight to justify the dose reduction. will it help? i'm on 1200 mg daily. week 18. undie @ 12. haven't missed a pill. even if the dr. prescribes procrit after my lab results i understand it takes weeks to kick in. will reducing by 200 mg at this point in the game matter? of course i know no dr's here, just looking for logical information. thanks in advance.

[mikesimon]

It might help your hemoglobin. My question is: is your dose weight appropriate? I weighed 165 and was taking 1000 mg. per day. I assume that your doctor set the dose but I know how we like to play around with this stuff so I am asking is - do you need that much ribavirin? But, if that is your dose and you see you doctor Tuesday I would wait to see what he/she says about it. Good luck. Mike

[amirtracy]

Hi Mike. Hope you're doing well. thanks for the reply. i weigh 179 now. weighed 189 when i started tx. doc said 1200 was right for me then. i'm not sure the weight/dosage ratio tho'. do you know what it is? i know i feel like i couldn't make it to the mailbox and back right now and if just one less of those little buggers makes a difference...
i'll talk to my PA tomorrow. I guess i'll swallow 'em tonight and take it from there.
thanks again mike and take care of yourself.  tracy

[mikesimon]

Off hand I don't know but I would assume that you 1000 mg. would be adequate. But, please with to see you doctor befor making a change. And I am not sure that 200 mg. decrease would make all that much differnce. Check with your doctor Tacy. Good luck. BTW I am doing okay. The Pegasys, even at 1/2 dose, isn't my idea of fun, but it's doable. Thanks, Mike

[amirtracy]

I'll do that Mike. I'll ask my dr. and see what he says. There's a concept!
I'm glad you're doing okay. i think about you often. you've been an inspiration to me. take care Mike. and thanks again.  Tracy

[52TELE]

This whole tx thing would be a lot easier if you could just take the meds  and move on , wouldn't it. But you've got to check this and watch that but not until you get to this but not as low as that , reduce those and increase them and to make it all worse  , it's all vaguely based on how much you weigh! GGAM!

Tracy , I come in at a very petite 260 lbs and they have me taking 1400 mg/day and I'm still hungry after I take them.

Take care.
Good luck with the HGB.

[amirtracy]

I know what you mean. I wish there was a cut-off day for worrying about these numbers but there doesn't seem to be one. There's no relaxing on these meds.

[amirtracy]

BTW, i enjoy your posts. You usually bring a sense of comic relief to the party and it's much needed at times as you know....

[dyce]

Ha tracy, I've lost 18pounds so far from this stuff and like you haven't missed a dose. It's hard to eat , especially with the hmg dipps down. I had to take a few days off work this week to try and build myself back up a little but it's back to the grind wheel tomarrow. Hope ypur hmg comes back up , all we can do is try to keep fightin.

         I'd talk to the doc before I'd reduce the riba , 10 pounds doesn't seem like to bad a weight drop.

[amirtracy]

Hi dyceman. You hang in there, i know you've been having a time of it lately too. I wouldn't mind losing fat but i'm losing muscle tone. i can't WAIT to have the energy to work out again. not gonna happen now. no way. anyways. you take care of yourself and REST dammit.  tracy

[fishdoc]

I weighed 180 at the start of tx, and haven't gained or lost an ounce...I was on 1200, now I am on 1600.  I think it sounds like its working for you, so I would be bank on the procrit, not on taking a chance with reducing riba.  We're all on the same "long strange trip", and man, I cringe at the thought of do-overs..........dyceman, how you doin?  Candyman's gonna hit the procrit, aren't you already on it?

[amirtracy]

hi fishdoc. i'm gonna see about the procrit train and try to stay where i am on riba dose. feel like warm poo. gets a little discouraging sometimes but i'm up for the game. hope your feeling better. where's your hmg at now?

[amirtracy]

hey fish- notice any difference w/increased riba?

[jmjm530]

A few different protocols, but one common rule of thumb is 1200 mg/day of riba if you weigh over 160lbs and 1000 mg if under 160 lbs. This is for genotype 1. Another, I've seen is 800 mg <143 lbs; 1000 mg 143-186lbs; 1200mg 187-231 lbs. Then there's also a more finely tuned weight-based formula(s) I can't put my finger on.

In your case, your starting weight of 189 lbs fell into the 1200 mg/day category, whichever scheme you used. Now, at at 179lbs, you fall into the 1200mg/day category in the first scheme, and somewhere near the top of 1000mg/day category in the second scheme.

In my case, I was offered the three-tiered approach (1000 mg/day) at pre-tx weight of 176 lbs. I declined and took the two-tiered approach and started at 1200mg/day. Except for some experimentation early on with much higher doses, I remained on 1200mg/day througout treatment even though my weight dropped to 148 lbs at one time. My personal theory is leave the dance with the one (1200mg/day)that brought me there (to non-detectible).

I should add that when my weight dropped below 160, my NP suggested I lower my riba to 1000mg/day, while my doctor felt it important for me to keeep it at 1200mg/day. Of course, I went my doctor, since that's what I wanted to do
anyway :) As you can see, these decisions are not really a science but they do have to be made on some basis.

More riba does equate with more anemia and sides, but not necessarily with higher drop out rates. Keeping full riba dose is also more important for the first 12 weeks.

As suggested, ask your doctor, but my guess is they will leave it up to you, as long as you appear to be doing OK, and a lot will depend on your current hgb plus symptons. In any event, based on the way you say you feel, it's really time to have the Procrit discussion with your doctor as it does take a few weeks to kick in. I'd also ask them if your hgb could be monitored weekly until it stabalizes.

All the best luck.

-- Jim

[amirtracy]

Thanks jim. that's what i was looking for. i'm gonna talk to my PA tomorrow and try to get the prescription for procrit. i don't know why they wait until you feel this way.?.
BTW, my hubby played pro-soccer. we love the world cup. it's been a life-saver during these long days of couch. :) i have to say i'm pulling for ghana but do love those brazilians. they smile alot. thanks again.  tracy

[fishdoc]

first three weeks at 1400 I missed some work, felt pretty cruddy, upped it to 1600 last friday, and had the best week I've had in a long time... my brain actually sorta functioned..... every week its a crappie shoot...........(dyce, you get it, right?)  take care and hang tough...

[Forseegood]

just a thought, how much would riba would I take if I jumped in? wonder how much it matters with vertex...I weigh 127 and am 5'6.  just wondering, I hope Can Man, Tracy, Dyce, etc...all feel better soon with whatever dosages...

Jim: you were on fire the other day, hilarious! were you coo coo for cocopuffs or what? ha ha! Still haven't tried the natto yet...

[amirtracy]

So it's not just me that's noticed jim's playfulness as of late? Post-tx is agreeing w/ him it seems LOL!

[amirtracy]

oh and thanks for the well wishes.

[jmjm530]

Forsee: ...how much would riba would I take if I jumped in?  wonder how much it matters with vertex...I weigh 127 and am 5'6..."
----------------

With regular combo, a geno 1 of your weight would probably take 800 or 1000mg, depending on what protocol was followed. I believe NY Girl had a similar pre-tx weight and ending up taking 1000mg, although originally prescribed 800. Not sure how Vertex enters into  the equation, but if you treat with Vertex in the trial stage, the riba dosage will probably not be left up to you.

Regarding my recent "playfulness" (and I suppose you're talking in part about my good friend Mr. Brian Fog) being upbeat doesn't necessarily translate into feeling good, and in fact I believe that theme was covered in a letter that circulated the internet to help friends and relatives deal with those treating for hep c.

In part the letter said that phrases like "but you sound good" can quite unintentionally minimize what those treating are actually going through by not allowing them to smile in the midst of adversity.  Don't have to remind you that lots of funny stuff is posted here by those who don't feel good at all.

OK. So now that I've brought everyone down LOL -- in my particular case, being the simple sort I am, how I feel and how I sound often does correlate, and this past week I have felt pretty good both physically and mentally. Hopefully, if I can get rid of some pesky lingering sides, the mood will stick.

-- Jim

[strator]

Hey there Lady -  Wish you were feeling better some. Got no idea about the riba dosing. I lost no weight the  first 3mos of tx but in the last 6mos I lost 30lbs. I'm kinda hopin that the wt loss versus taking the same 1000mg of Riba I've been takin since the beginnning might be helpin the meds work. Also hoping the wt loss is med related and I'm not just evaporating from the exodus of brain cells and the 30 or so trips to the bathroom everyday. Hey maybe the wt loss is viral bugs on the run, how much do copies weigh anyways? Lets see I killed almost 18.7mil already, so if 1 bug weighs...
Well just take care of yourself there, throw a few hugs and smiles around, they're less cardiovascular then most stuff and give better returns.
Be well,
Don

[Forseegood]

Yes, I know about that letter and I agree with it...I know I look pretty good, well, that's what they tell me, even though sometimes I do feel a bit fatigued...from what I gather so far from liver disease (and not the treatment) if you start looking bad youre pretty far down the line in the disease usually....

Some of the funniest people I know actually suffer from depression, it kinda makes sense...but you do seem more upbeat, that's for sure...and for that I'm glad...

they said on the treatment protocols for the trials that people will be given "the average dosages for the particular drug protocols" whatever that means...

[bobbyullc]

sorry re. the hgb, the formular is 10.6 riba per every kg. in your case 179/2.2=81 kg so 10.6 x 81 kg = 813 riba. with geno 1 they try not to give less than 1000mg. hope that helps. in any event if you get to sick to continue tx it is worse than if you cut back a hair. it seems like 1400 is a bit high even for your normal weight.

bobby

[jmjm530]

Forsee: if you start looking bad youre pretty far down the line in the disease usually....
--------------------------------
Not necesseessarrillly...just wait till you start treating and look in the mirror and see that riba rashed face after droping 30 pounds. LOL.

--------

But going back to the other topic, often you find yourself between a rock and a hard place with friends and relatives when on treatment -- especially if your major contact is on the phone.

If you moan and groan, they'll *get* it but after awhile the phone stops ringing. LOL. On the other hand, if you're upbeat all the time, they start to wonder why you won't go out and play -- and the phone stops ringing. LOL. I never found the happy compromise.

You said: hey said on the treatment protocols for the trials that people will be given "the average dosages for the particular drug protocols" whatever that means..

Exactly, whatever that means. LOL. You really going to do this or just talking trash :) What about Alinia? A long shot but I'd be tempted to try it first if in your shoes, because no riba and no peg -- or at least wait a few months until some "hard, factual" anecdotal data rolls in. :)

-- Jim

[Forseegood]

Remember, I qualified that "without treatment" I do know that treatment isn't any precursor to us entering any beauty pageants...in fact I wonder what I'll look like without hair...Anise and I had discussed the "round head" dillema, maybe I'll look like Charlie Brown in drag? But of course, that should be the least of my worries, (but it isn't) whatever...ha ha!

Youre a caring person Jim, I know this...this trial is the kinda thing where I'll be "glad" if I'm accepted, and maybe "glad" if I'm not?

I am thinking of trying the alinia, just waiting a few months (if I'm not accepted) to see how my friends fare with it...(they are telling me that they feel better overall, but they aren't completely sure that that's not the placebo effect, though they both say they are feeling more apt to do activiites that they wren't doing, so maybe it is working, who knows?) these next few months will tell me a lot...I even broached my doc about having another biopsy (like I'm looking forward to that) to help decide what to do...

be well, next thing you know we'll be hearing that your entering Iron Man triathalon contests...heard tell that at certain ones you have to wear Man Thongs....

[jmjm530]

I've seen different numbers kicked around for weight-based riba dosing based on mg per kg of body weight, but 10.6 mg/kg seems on the low side. Not sure how current, but here's a study that uses 13.3 and 15.2 mg/kg which translate for someone weighing 179 pounds to 1082 and 1236 mg of riba a day. I believe the higher dosage did better which is the dosage Amir is currently on. Certainly something to go over and discuss with doctor.

http://www.medscape.com/viewarticle/518702

[52TELE]

Thank you for noticing. There are lots of funny people here that let it out once in a while and I now it makes them feel better , I know it does me. I'm inadaquate to really be helpful to anyone on the forum that really needs it , my knowlegde of the disease is paled in comparison to most of the "long timers" here so I try to leave all of the serious stuff to them and try to disguise my sarcasm as humor hoping to maybe distract someone
from their daily worries.

I've got to turn this machine off for a little while. I've been sitting here all weekend working and my eyes are starting to cross , or is that a new sx?

[jmjm530]

Tele:... I've been sitting here all weekend working and my eyes are starting to cross , or is that a new sx?...
------------
I wouldn't start to worry until you're convinced that the crossed eyes will protect you from wearwolves. Then consider discussing your riba dosage with doctor :)

-- Jim

[bobbyullc]

thank a bunch, that article was great. my info comes from the package and always seemed low. that makes me feel better now i know why my dose was so high. it showed a differenc of from about 28% svr with 13.3 to 48% svr and much better long term svr than the 10.5 or 13.3.
bobby

[jmjm530]

The Shiffman study uses epo (procrit) in the higher riba-dosed groups no doubt to decrease sides and compliance. I doubt if I could have maintained 1200 mg/day of riba safely without Procrit -- on the other hand, we're all different and some here seem to function quite well with lower hgb levels than others.

-- Jim

[bobbyullc]

sorry that last post was for you. my sheet in my peg box mentioned 10.5 but everyone was on a higher dose including me. that article showing how increased doses improve svr was heartening. how is your sun and psoriasis problems? my sun is getting some better but the psoriasis is a bugger. 2 weeks post tx. i know you are longer than that.
my hgb never went below 12 but the fatigue was overwheming at times. i am glad as bc/bs would not cover injectables.

hope you feel gooder sooner.
bobby

[GoofyDad]

For the foggy folks reading at home, if you're having trouble with the formula try

weight_in_lbs / 2.2 X your_mg_per_kg

so in Forsee's case 127 / 2.2 X 15.2 =  877

or if you want to know your ratio

dose / weight_in_lbs X 2.2

800 / 127 X  2.2 = 13.9

[Forseegood]

huh?

[amirtracy]

Thanks you guys. Hope you both are hanging in there...

foresee- the vision of jim-in-man-thongs (or anyone for that matter) made me laugh and i'm low on air!! Stop it!

[NYgirl]

I would NEVER reduce the meds for any reason especially in the first 12 weeks if I could help it.

The anemia is a VERY common side effect and one that we just have to deal with until the doctor prescribes Procrit.  It stinks but it is how it goes.

I asked my doctor to UP my Riba before tx started hoping the extra would do me good. Of course it SLAMMED me with the anemia big time (from 15+ to only 9 in just over a week)- and I wanted to give up but I took the advice of those in here did not reduce and waited for the Procrit (Epogen) to kick in.

I've NEVER regretted that advice was some of the best I've ever taken.

[jerialice]

hi i reduced mine last time and relapsed. i don't reccomend it.
just get pcrit- huge difference! i am @ 1000/day wiegh 104.
ja

[bobbyullc]

get used to no air, i used to stand up and hold on to the wall before walking. THAT went away 2 days post tx. thank GOD.
bobby