Wrong Dosage???

[befuddledbedarned]

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

[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

[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

[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.

[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.

[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!

[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!!!