Wrong Dosage???

Has anyone here "EVER" been put on the Wrong Dosage? If So, Now How is that going to effect my outcome, & is it to late to correct this? I am about to have my first Real "Riba-Rage" over this as I feel sure it was my "Nurse Hatchet" That screwed up & gave me the wrong "Pre-Printed" Prescription. I am totally pissed. I am a combo strain of 1a, & 1b, & since I gained that 20 lbs while sitting on my pity pot before TX I should have been on the Max dosage of 1200mg of the Copagus, even now that I have lost that 17 lbs, I should still be on at least 1000mg, & I have been on freakin 800 since I started! (which is for people that are on 24 week treatment for genotypes 2 & 3's)!!! I talked to the Nurses @ Pegasys Hot Line... & they are stumped & concerned, as to why, & how this could have happened... I guess it is an easy oversight, as I have even posted my dosage & med cost in here several times, & nobody picked up on it either. So now my question is... What now??? Increase my dosage & extend my TX for 6 more weeks on the tail end of this? I feel vulnerable & sabotaged!!! Furthermore, I am Soooo Pissed! That's the one BIG thing you don't do is mess with peoples meds, Y'all see how upset folks get when they have to reduce you meds, now imagine how it feels to find that you have been on reduced meds all along (Which Reduces My SVR Rate from 48% down to 41%)Gezz... with my genotype (Especially my combo strain) I need every % I can get! Being us combo strains are so "rare", there just isn't that much data on our success rates as it is! Ahhhh!!!
Vicki

[Fubarcat]

At the risk of sounding like a complete idiot, maybe there was a reason your doctor had you on the dosage you were on.  Have you had a chance to discuss with him the reasoning why you were on that dosage?  I know it's hard to get through to the doctors, but I would make an appointment and discuss it with him/her and see if there was a reason for the difference in dosage.  I am sorry you got this bad news right now.  I don't blame you for being pissed.  But, trying to look on the optimistic side, there could be some medical reason for it.  I hope so.

[ringading]

morning dollie, just got up and got your e-mail.  e-ed you back...but thought i might find yah here.....i am fairly positive...99.9% that the cop and rib dosages are NEVER determined by LENGHT of treatment, but rather by body weight....I AM ON 800MG. dly of ribavirine and weight about 135...since these are "Weight Based" meds, it is that , that will determine the dosage..unless..the newer brand that you are on is based differently, but i don't think so somehow, since  reshearch was done on weight based dosaging.....opps....bell just rung, it's you knockin at the 'in box'
love kimmy

[Fubarcat]

I bet you are right about the doc not even knowing.  I'm 108 pounds and am on 800 mg riba daily.  I'm 1b, Stage III.  When I went in to see my doc for "patient education" after having the meds delivered and before taking them, he grabbed my bottle of Peg and my bottle of Riba and started doing some mathematical calculations and figured that was the right dosage for my weight.  So, I know it is definitely weight based.  However, if your pharmacy is freaking, then maybe they are the ones that actually gave you a lower dosage.  Can you get a copy of the original Rx that you were given to see if it was written incorrectly?  Actually, the bottom line is "How is this going to affect your treatment in the long run?" and only your doc can answer that question.  Hopefully he/she will call you soon and put all your fears to rest!  Think good thoughts!

[ringading]

pegasys info

www.pegasys.com

1-877-734-2797

[layla]

Yes I was also put on the wrong dosage in the beginning. I am a G1 and was put on 800 when it states right on the drug inserts G1'a lowest dose it 1000 and for 165lbs and up it's 1200. I didn't notice at first and I was upset too. The pharmacy didn't catch it since I was the first script filled on pegasys.The RN didn't notice for the same reason until I called. I did have a 2 log drop by 12 weeks but I didn't clear. This worried me. I did clear at 24 weeks. Well I am now doing extended tx. I'm on 49/60. There are no studies on this and the increase in time on tx seems to provide only a small increase in SVR chances, about 5%, but I decided to go with it mainly because if I don't SVR this will drive me nuts wondering if I should have done this. LL

[ringading]

well...don't bother with THAT number....dickhead didn't even KNOW what copagus WAS.......and he is one of the nurses at pegasys......hang on vicki girl.....i'm not done yet....

[ringading]

oh wow....what a mix-up eh....well if layla has already been through this, she would know...i wonder how many other people have had this experience as well......so sorry this happened to you both.....man i'd be tripping out also....i tried to find more info but seem to be having trouble with brain working with me the morning after shot night....
hugs....

[Fubarcat]

Ring - you crack me up.  That sounds just like something I would say!  Befuddled - NOW you have the right attitude!  Go get 'em!  (P.S. - I took my nickname from a cat I had.  Then you mentioned the word "snafu" and remembered I had another cat named Snafu - not related to Fubar, however.  That memory made me smile!)

[WackyKilkins]

I had a mistake made by the pharmacy on my injection.  They forgot to put "inject .5cc" on my label and while reading the generic information I was given by the Doctor, it read inject .7cc, so that's what I did.  I later found out that my first injection was incorrect while talking to the nurse who calls and checks on me every couple of weeks.  My doctors office tried to smooth it over.  

Sorry to hear about your mistake.  I would deffinitly try to get a copy of the original RX.  (It may not be the nurse.)  Prayers to you.

[missers]

My husband also a 1a & 1b combo on Pegasys/Copegus tx.  He is 6'4" and at onset of tx weighed approx 235.  Doc started him on 1200 mg of Copegus but about 16 weeks into tx he became anemic and doc cut dosage to 800 mg and assured us that dosage was well within parameters for his weight (which had dropped to 212)so we know it is weight based.  Doc also said that cutting dosage would not have been a big deal even if he hadn't lost so much weight. We weren't happy with the cut in dosage as we thought that it might decrease his chance to achieve SVR. After some research on the Roche website and re-reading the medication information, we realized that the difference in the percentage of success was minimal (1%)with the lower dosage for genotype 1.  My husband just finished week 48/48 and was showing as undectable since week 12.  I know everyone responds differently, but try not to get too "freaked".  Just talk to your doc and ask if you should up your dosage.

[ringading]

ohhhhhhh okay.....ALRIGHT....WHERE THE HELLS MY GUN.......NOW I'M TRIPPING FOR YOU!!!!!!!

well, a girls gotta do that for her friends....espeacially since i seem to have lost all MY VERY OWN riba rage.....figure i'll just borrow some of yours darlin....

fubarcat.....LOVE the name and how very appropriate given this beauricratic nightmare we must wade through.....

OKAY.....RIGHT....THE GUN......I'VE GOT YOUR BACK VICKI!!!!

[eyehavegr8life]

Hi there, I'm so sorry to hear about your meds situation! I'm a newbie, not on meds yet, but I "lurk" here daily.You were one of the first to post to me in Dec when I found out I had this dragon! I just want ya to know I'm being supportive. I only wish I had the answers for you? It's good that you are staying your own advocate, and caught this now to question?...It could have been futher down the treatment road! I hope that this dosage problem isn't one, and it IS givin by weight...then things will be OK. This is where I gather my info so I can be informed at my Dr visits. I will be following your story so I can be aware when I finally start treatment. I ended up going back "Three Steps" by getting a second opinion with the Director of Hepatology at Cedars Sinai. My biopsy appt with the first GI was "squashed" when I changed Drs,so now I wait until Mar 16 to see a Hepatologist,then a biopsy. I'm learnin real quick here, this is a "waiting game" and I'm learnin how to wait! Sheesh, I hate this! Keep us updated. Positive thoughts your way, Annette

[Dirac]

With this low ribavirin, what was the result of your therapy?
Did you have any pcr yet? Good luck.

[honey1616]

What a screw up?  I mean really...the nurse/dr can't get the meds straight for weight?  haha I got your back covered too...Go down and shoot em!  heh   How do they like that for riba rage??  ok..i am 130 lbs and on 1000  and my hubby is 180 and on 1200.  I never remember you saying you were on 800 or if you did...I might not have even thought anything about it because I would be thinking you were just a tiny thing.  I'm thinking you could now start 2 in morn and 3 at night.  Yeppers...I'm finding as I go through this mess that I and only I have to be on top of everything because the dr isn't at all times.  I mean...its our lives we are talking about here and we want to do this tx only once...not 2 or 3 times because of screw ups!  Sorry,,you are having to deal with this now.

[honey1616]

hahahahaha Outraged lady shows up drs office in pjs demanding meds with a gun!  And then proceeds to lounge area for a few good reads while waiting LOL

[jevs2]

My understanding,from everything that I have read, about Ribavirin doseage is that weight does not come into it at all.
All genotype 2/3 should be on 800 mg and all genotype 1 should be on 1200 mg.
I would get your doseage put up asap.
Best wishes
Joanna

[mumsie]

Same thing happened nurse circled the wrong doseage  .4  should have been   .5  and the script was wrong ,I don't know a red flag went up ,I phoned the druggist and did the math over the phone with her ,she phoned my Dr. and got it all straightened out.People make mistakes...that's how I ended up here in the first place,made some bad choices,cicled the wrong answer if you will.It was a test and I failed,but I'm going to pass with flying colours this time.

[odessit]

In my opinion, the dosage of Ribavirin isn't a factor in the first 8-12 weeks into tx. Why? Because it's Interferon(Pegasys) that kills the virus, NOT the Riba! We need Riba to stay clear and not to relapse. Besides, Riba accumulates in the body over time, usually it's 6-8 weeks period.
If your Hgb is still in the normal range, talk to your Dr/Nurse about increasing Riba dosage. You are doing just fine!

[honey1616]

You are on the right amount for your weight.  According to my dr even though I am a 1 also...its still judged by weight.  I did read that someone said for 1's...it should be 1200 no matter weight but I have not heard that one so not sure.

[DownThisRoad]

I didn't have problems or mix up with dosage of Riba.  My GI put me on 1,200 daily, from the beginning.  I am 1a and my GI is hitting my virus really hard.  I even asked (twice) after I cleared if I could lower my dosage a little to 800 daily.

My GI said NO.  That I will continue on with the 1,200 as I started off on.  I only weigh 135 lbs and weighed 141 when I started treatment.

I think I would feel a little better and more perkier (how do you spell that) if I would lower my riba, but I can't because my GI would have a fit on me and I can't take the risk that a lower dose will continue to keep my virus undetectable.

[honey1616]

Amazing...I can't believe you are saying that I am strong.  I guess I'm thinking about when I first found this board a couple of months ago and felt like my whole life was shattered in one instance. I read and read so many postings way up to the wee hours of night and then you start getting this mental picture of each and everyone that is here and this enters your daily life because NOW this is your life.  And of course all your postings..I have read and just can't believe that there is a woman out there battling one thing and slaying another etc.. And never a complaint, never a rant or even better yet RIBA RAGE.  Just keeps hanging in there and being so encouraging to everyone!  I think of Indiana...haha someone said Pied Piper and thats perfect and I could go down the line as I have told my hubby so many times and he knows each and everyone of you...Dallasstar well she has to be an angel that was sent to this board!  My heart goes out to you but I don't know why because you seem to be handling it all so well.  Awwww...Galveston on the beach haha  I will be thinking of you lady!  I'm only about 45 miles away and maybe going to use a little of those sun rays myself this year for these cold bones from tx!!

[tina b]

Hi all, I have a dosage question. My husband was on peg-intron and reba 1200 mg for 6 months last year, Geno 3a he relapsed 6 months after tx due to high iron,it has been a while and I will give him his first shot this Friday, my questions is (he is doing the mix peg stuff) Draw the liquid to 7 in the first needle, insert that into the dry bottle and stir gently and draw to 5 on the fresh needle for the shot? Does that question make any sense? Thanks!

[willing]

sorry about the unnecessary aggravation. Here's Roche's <a href="http://www.pegasys.com/hcp/dosing.asp">dosing recommendations</a> for riba. Only 1s are weight based, for 2s and 3s the recommended dosage is a one-size-fits-all 800. For 1s, the 75kg(165lb) threshold for 1000 vs 1200 is pretty crude. A more sensitive way to look at dose is mg/kg or mg/lb. The optimal number   seems to be at least <a href="http://www.hivandhepatitis.com/2003icr/03_assld/docs/pegasys/102703_g.html">13.75 mg/kg</a> or 6.25 mg/lb. So if you're at 167 you should be doing 1000. Rather than get frustrated with your nurse, dr. etc. I'd suggest simply increasing your dose. That's what I ended up doing after trying to persuade my Dr. his rx was too low. Make sure you keep an eye on your CBCs though - a higher dose definitely does more damage.

[jg2001]

I love the "taking up the whole couch reading a magazine" idea!Use your cell phone and order lunch delivery!  What a terrific amount of response and support this site offers.  Now I've learned something new, again, today...keep my eyes open to what's going on and ask questions.  I go next week for results and to schedule the bx.  YIKES!  All I can imagine during the biopsy is them ripping my liver out through a tiny little hole in my back!  Now that sounds like FUN!!!

[louisep]

Hey Vicki,
Just e mailed you.
Hang in there sweetheart!
Love & hugs,
Louise

[ringading]

hey there...okay now I'M CONFUSED....i guess the 2 different meds are slightly different in how they are administered....i am on....Pegetron by SCHERING(peginterferon alph-2b ) as well as Ribavirine capsules, 800mg daily, SCHERING.....and this IS weight based even though i am geneotype 3a...the box clearly says

FOR PATIENTS 40kg-<64kg.....hummm don't know what that translates to in pounds, around 100lbs to 165lbs i believe

but....this is the SCHERING PRODUCT....not the PEGASYS/COPAGUS

maybe this is where the difference is...do you think?  i know that pegasys is considered a step up and above from pegetron(schering product) and wonder if maybe this is how the info is differing slightly.....just a thought

[hph5477]

Sounds correct.  I do the mix as well and push .7 air into the sterile water bottle and pull out .7; then insert in the powder bottle and gentle mix; then pull out .5 with the new syringe.
...Good luck with this. I just did 16/48 last week and I still sometimes get a litle nervous mixing the pegintron and then injecting.

[willing]

Hi Ring - ribavirin is ribavirin, Roche and Schering just have different brand names for it. The drug was actually developed by a British pharma which sells it by yet another name. I couldn't find the actual Schering med insert but it looks like <a href="http://www.rxlist.com/cgi/generic2/rebetol_ids.htm">Schering</a> doesn't mention adjusting riba dose by genotype, which is contrary to the NIH consensus recommendation. I've got to run right now but will post them later.

[DH Bill]

My # 1 question  for doc this thursday is why he had me on 1400 mg copegus for the last 6 months but let the insurance company reduce it to 1200 mg cause thats all they would pay for.
If dose didn't matter then why have me on more of this riba rage drug than I needed, if it does matter why not give me option of paying for what I needed and not just have nurse tell me over phone it SHOULDN'T matter. This is redundant anyway thanks to a wonderful person on this site but I WANT ANSWERS. I will let you all know the outcome Thurs. BTW got letter saying I was approved for both peg and copeg  just waiting now on who I will get it from and how much money it will cost me.
If it's true adversity makes us stonger than when this is done I will be SUPERF%*#INGMAN : )

[tina b]

Thanks, It is all coming back to me clearly now. I give my husband his shots because he too doesn't like to give them to himself. THANKS AGAIN!!!!

[ringading]

WILLING thanks for taking the time to do that willing......it can get rather confusing very quickly....espeacially with all the drugs crashing, slipping, dripping, and crawling through our viens.....nothing seems clear to me anymore and i have decided i rather like the view from here.....haha...at least lately anyways......but it would be nice to understand exactly how this is dose based....

dhBill.....you already are SUPERMAN, with your amazing tolerance and stick-to-it ness!!!!!!!

[ringading]

hey there dragon fire spittin BUTT!!!!....thanks for the BOOK!!! i've been MEANING to read a new one anyways....yours was as good as it gets>.......question.......how the hell could you REMEMBER all that to write it...oh...you wing nut...you've obviously taken the good advice i gave re; POST-IT-NOTES?????

hahaha soooooo glad thats all straightened out and that it ONLY took since 10am this morning...thats only 5 and 1/2 wee hours...oh.....i really feel like a group hug is in order here!!!
dingy kimmy

[tina b]

How are the sides? My husband is getting a little nervous, he says "Not as nervous this time" cause he knows what to expect, "just dreading it." He has agreed to do the tylenol this round, he didn't last time. He is (was) stage 3 grade 4 on his biopsy in October 2002. Geno 3s, His liver has improved with the reduction of iron, 1st round of tx and lots of milk thistle, vit E, vit B-12 (for the brain fog) green tea, and flax seed oil, GI said okay to continue with these during the tx. When he started tx last time in 2002, all his labs for liver were screwed up BIG time. Now all liver tests are NORMAL (THANK GOD) and the iron has been taken care of for now so we are hoping he feels a little better this round, he not only had the tx sides, but also had the iron overload symptoms at the same time, it is a wonder it didn't do him in. He feels great right now........but.....Fridays comming. Thanks for all the info everyone! Gods Speed to you ALL!

[hph5477]

So far, my first 2 wks were the roughest for me.  Since then the sx haven't really been very bad.  I do my shot early Fri AM and then try to take it easy most of the day.  Will feel rundown Fri evenings but it's been tolerable.  The rest of the wk is pretty good for me.  My worst part was the headaches (Migraines) until my doc prescribed Imitrex.  Haven't experienced any bad sx since taking one Imitrex day of shot (as soon as I feel the headache coming on).  Just did 16/48 last week.  Time is passing fairly quickly.
     Good luck to you and your husband this time round.  Hope his sx are much less this time.  Just be sure he takes it easy some and gets plenty of rest; and drinks the water.

Good luck.

[Fubarcat]

Yippee!  I KNEW you would get it straightened out.  Glad your doctor can humor you as well as give you what seems to be reasonable explanations for his thinking and dosing the way he did.  At least it sounds reasonable to me, but what do I know?  I'm only 4/52 right now, so a relative newbie.  Anyway, sweet dreams and glad things worked out for you.

[hph5477]

PLEASE!  Calm down.  You are getting worked up over something in the past that you have no control over.  Decide how to approach your doctor to make sure you are NOW taking the correct dosage and go from there.  Life is way too short to get this worked up ... think about how to get it corrected if it is wrong; and then move on.
...BTW, I take 800 mg of Rebetol.  I believe there are quite a few people on this forum that are only taking 800 mg.

[Shadey712]

One of my anti-d's states that sides are VIVID DREAMS,  and boy have I had them. I just had to post and tell you all that in my dream last week I was panicking bewcause a rain storm was coming and somebody had just brought me a farm truck full of post-it note packs and I had to get them all in or they would be ruined.  This week my strange dream was about a really kewl super weapon that was going to save the world, and also was a fun video game system virtual reality type.  Where does this stuff come from????  Shadey

[ringading]

well....the 'post-it-notes dream is easy......you forgot when the bales of hay and feed were being delivered so in your panic, you imagined the feed truck bringing POST-ITS so you'd REMEMBER to be there....and ....pay!!!....now...as for the kewl super weapon...hummmm....could it possibly be a WEAPON that ZAPS HEP C.......?????
just call me dingy PhD.....tee hee