new guy who's experienced a few RediPen malfunctions

[awesome_possum]

Hello all,

after reading some inspiring svr stories I've decide to participate in the forum.

I'm a 1a, I went thru the tx in '90 for 6 months. It didn't take. Now I'm on the PegIntron/ribavirin tx. Week 8 out of 48.

Here's the question...I've had a pen failure and didn't bring a backup along, (was out of state, etc) so went a week w/o a shot. Other than adding a week to the tx, could this have banjaxed the tx on some level.

I'm paranoid by nature.

For all of you svr...you are my lifeline.

[jmjm530]

There's no pat answer and guessing is counter productive. Why don't you ask your doc for an early viral load test now, and another at week 12. If you get a good viral response then then missing the shot becomes academic. FWIW, I remember reading over at Dr. Cecil's site that missing a shot of Peg early on treatment isn't as bad as missing it toward the end. Pretty sure I got that right :) Didn't make much sense to me but if true that goes toward your favor. All the best with treatment and SVR.

-- Jim

[fishdoc]

Hi everyone, sorry about cross-posting, but it goes along with newbie questions.  My Hep-ed is thursday, when I get my scripts, etc.  My question, is this redipen with the peg-intron script?  I want the pegasys/copegasys just based on the stats (slightly higher clearance rate) and what people have said here about the sx, but I still weigh a whopping 180 lbs.  What are my chances of whining my way into it by saying I don't want to use the redipen?  Also, my major newbie question: what are the "right" questions on neupogen and procrit?  Do I just say "how often do you run bloodwork" or at "what level do you prescribe....procrit...neupogen". Also, major question: at what levels SHOULD they prescribe....They aren't for the same thing are they?  Procrit is anemia... neupogen is ???  What about antidepressants?  How do you know when its depression?  I am turning fifty in March, and yes, I am a woman, so I am just waiting with bated breath to lose my proverbial sh** anyway... Oh sh** what if I already lost it, and just dont know it....

Hep me...

[jmjm530]

At 180 lbs I wouldn't summarily trash Peg Intron for Pegasys without some more thought. As many doctors and studies that say one is better than the other, you'll find an equal number that say the opposite. The advantge of Peg Intron is that it's weight-based dosing while Pegasys is one dose for all. For this reason some suggest Pegasys will give lighter folks a bigger punch and heavier folks will get a bigger punch with Peg Intron. You'll tend to find more people here on Pegasys (like myself) only because Roache seems to have a bigger promotional budget and frankly most people get started on whatever peg their doctor recommends to them. That said, some believe that Peg Intron has fewer sides but no studies that I know of confirm this. BTW if you really don't want to use redipen, I believe you can order Peg Intron in conventional vials but not sure. The redipen like everything else has its plusses and minuses. My only suggestion is to always have at least one extra shot at hand so if you blow a dose there's a back up. I currently have at least three pegasys vials in reserve and wouldn't feel comfortable with any less.

-- Jim

[sindog]

From what I understood from my doc, missing a day or two is ok, missing a week is probably not good. From there, I would take jmjm advice. She did tell me that sometimes, as with an illness, you just have to miss. In her experience with her patients, it didn't seem to affect vl.

[sindog]

My doc suggested peg-intron. She believes it is more effective than Pegasys. She also said there was no research that supported that opinion, and for every doctor that says peg-intron is better, there is another that says no difference.

I am on the weight based program. The Peg-intron cost about $40 a month more than Pegasys and my doctor said if that was a problem, no big deal, go with Pegasys and skip the weight based program. My doc treats only Hep c patients.

As for tests, you should have in hand your pcr that shows your viral load, know your genotype, a CBC that shows all your pre tx blood work, have your biopsy results, and most likely your script already in the fridge. As for my scripts I had to get pre approval from my insurance company and they were mailed to me, and my first shot was in the dr office. What I'm getting at is that I kept thinking I was going to start tx, and there was always something more that needed to be done. May not be the case for you.
After I started tx, I got blood work every two weeks for 6 weeks, now I get it every 6 weeks. As for your question "Do I just say "how often do you run bloodwork" or at "what level do you prescribe....procrit...neupogen". The answer, yes, yes ,yes, ask, ask ask. Your other question - Also, major question: at what levels SHOULD they prescribe....They aren't for the same thing are they? Procrit is anemia... neupogen is ???
My doc would percribe when WBC less than 2.0, hemoglobin less than 10, Hematocrit less than 30. Neupogen is for low white blood counts (fights infection) - Neutrophil less than 150.

[beamishboy]

awesome: i just did shot#9 today--hope we clear togethr!
sindog: we're trx togethr too,right? how r your sx treating you?
jim: iliked your comment on Doubledose post; nobody gettin out of this healthy,heck i will gladly settle for happy,content,wipin me own butt,but certainly awed--just watched-"what the Bleep,,,,"--mite interest your searching mind..
Fishdoc-you should find lots to ponder here,i'm doin Peg&ribavirin,like jim says-'weightbased'--GOODLUCK

[sindog]

Yes, did shot nine of friday. Side effects are minimal. just a little more tired and can't do as much as I used to. Still work 8 hrs a day, chores on weekend (in between play offs, Bronco fan fyi) take sleep aids, need my sleep. Slip into occasional fits of riba rage. Was watering the plants and spilled the water jug 3 times, I heaved it off the deck and almost accidently hit the dog (the real sindog). Got into an intense argument at work over the proper use of red or blue pencils. My supervisor, who is also my friend, is the only one who know about my sx and tx. He just makes fun of me and call me psycho jim.
How u doin?

[ASmile4U]

Sorry to hi jack the thread...I'm in need of some opinions.  Now I know why the 4 week PCR can be either great or not so good news.  Still glad I insisted on it though.  VL went from 827,000 to 498,000...not quite half.  Very discouraging.  Nothing to worry about since I haven't reached 12 weeks yet...or should I ask the doctor to up the meds? ...any input would be appreciated.  Thanks  :)

[jmjm530]

I think it would depend on your age, genotype, level of fibrosis, how you're tolerating treatment and how well versed your treatment doctor is in individualizing treatment. Certainly something to discuss with your doctor and if you have the time and resources with a second consult.

All that said, viral load variances from week 4 to 12 is not all that well studied so your current regimen might work out, but if it were me, I'd be asking the same questions you are. All the best luck.


-- Jim

[jmjm530]

I might add now before someone jumps in and says "well, that's the problem with the 4-week PCR" -- that the main purpose of the 4-week PCR is not to draw inferences from the amount of detectible virus but to draw inferences from a non-detectible result. In other word, if non-detectible and certain other requirements are met, a shortened treatment regimen becomes a more realistic alternative. As Kalio's doc said, a positive at week 4 doesn't mean you should jump to conclusions. That said, I'd probably (given MY stats) up the dosage if I didn't have close to two-logs at week 4, but that's just me.

-- Jim

[jmjm530]

What do you count posts so you can always hv the last word in a thread. LOL.

My point was slightly different. Of course, insulting new members with immature one-liners is wrong, and harassing another member by taking their name is really wrong -- I just think in the entire scheme of things here, a lot worse has gone on by long-standing members and here lies the real problem. Not to say Kalio2 shouldn't have been booted -- I agree he/she should have -- but Kalio 2 was an easy target to go after. Maybe that's what Coug meant, maybe not, but it's my take. Enough copy on this topic for me tonight.

-- Jim

[Forseegood]

Ha ha, we have totally agreed all along, we just had a few points that were hiding behind other ones...he he he. Be well and let us know what you decide to do about your treatment! I'll sign off too, i'm sure a few are sick of my mug for tonight!

[Forseegood]

Just wanted to say, I had a big long, too long, post meant for you et al in Cuteus' thread (it's recent), in case you miss it. Be well.

[Magnum]

Sorry to tread on your thread. Some people (like I used to) have a gag reflex when taking the not so friendly Ribavirin. Try this. Grind up the little pills and dump the powder into a glass of Minute Maid Mango Tropical Light juice, stir well, drink it down. Have a slice of toasted sesame seed bagel topped with orange marmalade. Then smoke some Medicinal Marijuana, have a couple of slices of cantaloupe along with some diet cottage cheese. As a reward after all that, prepare a bowl of fresh blueberries and drown them in Land-O-Lakes light Whipping Cream. Sit down and watch a good movie. This works well for me. Let me know how it works for you...

Magnum

[jmjm530]

I thought you were going somewhere else after the "whipping cream and blueberries". LOL. Glad you found something that works.

-- Jim

[Califia]

Okay, now I understand why you're called Magnum instead of Half Pint.

[ASmile4U]

Thanks guys...yes, I did bring it on myself...and I'm sure my doc will say something like Kalio's did...He doesn't believe in 4 week PCR's.  I insisted mostly because it's my 2nd round of tx and will base my length of tx on when I clear...definitely not interested in shortening as I don't think it's wise given the fact I'm a non responder...however, would give me the option to argue extending beyond 48 weeks.
I am 44, genotype 1, no biopsy...infected in 2003.  Tolerating Infergen 18 mcg 3 X week fairly well.  I'm ready to do daily, always have been...may very well be time for a 2nd opinion.  I too, feel like it's a good time to up the dosage and make the best of the next 8 weeks...and get me to undetectable.  Wanna go to the doc with me Jim and help me convince him to change my tx?  I can hear him now...  :)

[jmjm530]

I don't know a whole lot about Infergen but discussing daily dosing  with your doc might be a next step, given that this is your second round of treatment and that you're tolerating the meds so well.  There should be some studies regarding daily verus 3X-week dosing out there. Don't know if I can physically join you, but I'll be there in spirt, I promise :)

-- Jim

[missey]

I came on this forum to seek information and to learn from others through their experiences. I noticed from other threads that their seem to be some  tit for tat arguements( i can understand why in some cases) Its ashame because it appears a great forum( informative) Is this an American thing ( don't mean to cause offence)

[Mister beagle bailey]

I have been reading all about the problem of Kalio2 being booted off.

Spacecoast4 seems to think that it's just the internet and not real.  Well, as far as I'm concerned this forum deals with some very REAL sick people and when some one posts that the meds did not work and decided to try the Chinese treatment and some one comes back and said they like Chinese fried rice too is mean, hurtful and I'm being kind because there is some thing else I would rather say.

When some one attacks one of us who belongs here they attack all of us, and we will not put up with it.

To all my friends be well and remember we are stronger then those who wants to destroy.

  BB

[strator]

ASmile4U/Jim -  I certainly relate to your concerns about the pcr and whether the doc finds it relative. I see the doc Wed for the first real visit since I started tx. I'm a little nervous about finding out his take on my having a less than 2 log drop on my 12wk pcr-which I argued for and his nurse appoved. I will be prepared with copies of all my labs as well as printouts of the studies that Jim and Cuteus were kind enough to provide me. Actually a little worried how he will react to my attempt to provide him with studies which he may already be aware of. For me the 12wk was as much for my own mental health on tx. In the beginning I decided not to worry about the results of the meds til I got the 12weeks and then I could hardly think of anything except  an answer one way or the other.
I trust him and his knowledge but last visit (pre tx)I actually had to say grab a seat doc I got questions..to keep him from just checkin me quick an movin on to the next patient. Not sure regarding extending tx or upping riba if they'll be a point of 'okay Don you did some homework but so have I and these are my conclusions.

sindog - oh yeah. Hate it when my hands don't work. This morning emptying the dishwasher my gloves I knocked the silverware container over on the counter when I placed it there. Within micro seconds I'd thrown em all on the floor and banged my fist down twice on the counter, spun a tupperware container across the room. Lately my kid and Dad don't even bother to look up when I toss stuff.
Be Well All,
Don

[can-do-man]

First id like to say that i did not agree with some of what k2 said as it was uncalled for, some of what he said i thought was down right funny. But i also thought that some who responded by calling names such as stupid, ignorant was acting no better then he was.
Second, for those who wonders how many sick new people came here and read that stuff were offended and left you could also say the same thing when were acting silly and have are p**p threads or sex jokes. A new sick person comes here reads that stuff might feel that this forum doesn't take hcv to serious or is offended by the language being used.
Then you might have some people offended because anytime there is a dabate going on some feel the need to butt in and give their 2 cents worth all the time no matter what.
My point is, and i don't mean to offend anybody that no matter what is said or who says it somebody is going to be offended.
So for those that think a moderator is needed, then what if they have no sense of humor and bans anyone joking around, or they feel we have to stay on the hcv topic and nothing else. This place could become boring real fast.
So like the old saying "becareful what you wish for"
Id also like to add i don't post under no other name, don't need to, don't have the time and frankly don't care. I say whats on my mind and don't hide behind a fake id. But since a few said i was then others jump right on and ran with it. That is why i always say ask your doctor and don't take what you read on forums as gospel. Now blast away folks i can take it.

[Califia]

All this capability is reminding me of something.

A canner exceedingly canny
one day
remarked to his granny

a canner can can
anything that he can

but a man can't can
a can
can he?
    
                    
That's okay.  I can't (ahem) figue out what that means either, but there's a lot of canning in it.    I do genuinely like a can-do attitude.   Out here in La-La land it would probably  be

Kendu?  

The answer being --     Kendu2 ?

[it's terrible what some people will post at MedHelp]

[can-do-man]

[it's terrible what some people will post at MedHelp]

I agree.