Got Medication Amounts and OPEN for any Discussion

[Shanaenae]

So i just went to my last doctors appointment before i start treatment on April 19 and she gave me my medication amounts.

1000mg of Copygasus daily and 180 Micrograms of Pygasus weekly

Just curious what others amounts are and if anyone knows much about the amounts and how it relates to side effects and what not.
Getting very anxious to get this ball rolling. The doc also refilled my xanax prescription, so i should be good to go as far as my anticipation goes LOL.

26 days and counting down!!

Hope everyone is having a HAPPY friday:)

[jmjm530]

I'd just like to add that in spite of making fun of the program, it does serve a useful and important purpose -- having a nurse on call 24/7-- and it is provided free.

And while advice is generally a rote read of what is either what is on the drugs label (or Roache site); or simply "Call your doctor -- sometimes those two things can be very critical for someone without basic knowledge who hasn't been able to reach their doctor or wants to double-check something. I still call them every blue moon, but alas, never got an answer beyond what I already didn't know. :) BTW the same information they read you is on their web site, but sometimes it's easier to have someone look it up for you, especially if you're like sick as most of us are.

-- Jim

[OnAPrettyPoison]

I got busted by the pega police!

I was sitting on the bar stool giving it in the leg.  It dripped to the floor, and the next thing I knew it was gone.  Mr. Booglet always liked beer!  He generally isn't a face licker, he's too busy bouncing!

[GoofyDad]

Glad it worked out. Sorry for the rec. to call the be in charge pgm -- Meant to mention I had never called myself ;-)

Man, I can think of a lot of funny scenarios for the guzzling pooch. And he can nab it before it hits the floor?

Hope he's not a face licker!

[jmjm530]

You can start out the call to the Pegasys Nurse In Charge, saying you prefer to remain anonymous. This will save you lots of time and trouble since they're not going to tell you anything not on the drug label anyway, which they end up reading rote to you.

-- Jim

[OnAPrettyPoison]

Oops!  Sorry, I also meant to say thank you to you both.  I will remember about recreating scene of accident before dog sees anything hit floor!

[OnAPrettyPoison]

LOL you are right Jim.  I called the Pegasys in charge nurse and she wanted my info, when I started treatment, etc. and then said I needed to call my doctor that she couldn't advise me, but she was going to "record" my information for under dosing!  Like "bad girl, pretty poison" you shouldn't have let that pegasys squirt out.  What a farce!  Warning to anyone out there, don't call the in charge nurse if you have a question.

I called the doctor' service and left my dilemna, and the NP called me back and said don't sweat it, consider myself dosed.  They could have reduced for low WBC and at my weight the treatment would still be as effective since I had some interferon in my body.  Just not going to worry about it.

[GoofyDad]

Always nice to here from you my friend. Here I am teetering on my eggshells hoping for the big SVR. I don't like dwell on it, but I sure do have an interest in the out come, LOL.

Booking a trip to Europe for this summer with the kid. Don't know that I'll be able to follow through if I'm back on the tx.

Always happy *not* to hear applicance stories from you!

[amirtracy]

Thanks alot Jim.

[strator]

BDay girl: Hey that's good! In my own defense it was about 1am or so and I was actually having trouble finding the energy to go upstairs to bed. Also have to be careful at that time of morning, who knows what CanTankerous Dude would of twisted a faux on my partinto.

can doo doo- you said...I know some have eye problems while on this.. Well we know you see things differently than the rest of us, me realted? Still see parentheses and circles every place I go.

Goofy- How you doing my young post txer? ...recreate the scene...shoulda done that when that poster got 'balloons' from off the floor.
Be Good,
Don

[fishdoc]

Hey, just occurred to me... shouldn't it be "keep those FOGIES" rolling, or shuffling...

[jmjm530]

Hemoglobin usually takes its biggest hit early in treatment (first month) BUT can happen anytime. My neuts fell later in treatment and then yo-yo'd up and down. Sorry, you're never off the hook on hgb and neuts during tx -- just keep doing those CBC's on a regular basis and monitor how you feel.

As far as liver regeneration after SVR, I don't think anyone can give you a precise answer. Follow-up biopsy (only if indicated*) or follow-up with less invasive tests like Fibroscan will give you the answer.

* Some doctors only believe in needle biopsies if they are needed to make a treatment decision. In other words, "curiosity" is not always good enough in a post-tx scenario. Biopsies do carry risk and while maybe only a few in a thousand have serious complications, it's no solace if you're one of the few. Someone here recently had an organ punctured during needle biopsy.

-- Jim

[jmjm530]

Your doc and nurse-in-charge will probably say to leave well enough alone. (Actually Nurse in Charge usually won't say anything not printed on the label. LOL.)

But it were me, I'd take Goof's suggestion and try and create the amount of spill, if that is feasible -- then, I'd compensate for  whatever was missed with another syringe.

Finally, I'd call either your pharmacy and/or the drug company, and explain that through no fault of your own (we are all blameless :)) the needle popped loose, and you lost a parftial dose. That way you'll get a replacement for the second syringe which is now short. Save both syringes and anything left in them in case they want them returned. I exchanged a whole box of pre-filled returned once because it arrived unrefrigerated. No problem at all.

FWIW something similar happened to me once but since I was double-dosing, the doc said leave well enough alone. I did, figuring I didn't want three doses in me. LOL. I also think the needle-hypo setup is ergonomically flawed. If they had a screw on tip like B-D, this sort of thing would happen a lot less. Something you can rile them with if they give you a hard time exchanging :)

Good luck!

-- Jim

[amirtracy]

Hello. Hope everyone is well. Had a few questions that I can't seem to find answers to....Does anyone know if there is a period of time after starting tx when you become "safe" from falling neutrophils or hgb levels? Can it happen at any time? or are you out of danger after week #_? Also, if SVR is achieved how long does it take for liver regeneration? Thanks in advance....tracy

[OnAPrettyPoison]

So much for the scene of the accident - licked up by Mr. Booglet, cocker of destruction.....

[OnAPrettyPoison]

Thanks for the idea of recreating the scene of the accident and calling the line.  Will do!  You da' bomb!

[GoofyDad]

I'd call the be in charge line, if I were you. Or my doc, or both.

I would think tht if much was dripping, you would have noticed, but you would know better.

Were it me, I would probably draw some water up into the syringe, and squirt some out on the floor to recreate the scene of the accident. That would help me get a feel for just how much I had lost.

It's not too uncommon for folks to double dose, especially early on - so that might be an argument for topping yourself off with at least a partial supplemental injection -- as long as your counts are good (wbc and platelets).

Good luck.

[GoofyDad]

Wasabi: Sorry you're in a slump. Hang in there - we all go through peaks and valleys, so you no doubt have have better days to look forward to in the short term.

I was there in the 7's for a while myself. Not much fun, huh? It didn't take too much of a climb for me to feel marked improvement.

You taking your b12 and folic acid there girlie? Of course, be sure to check with your doc.

Can-do: Me sheepish? No way, Bub! Settle down there, Dairy Man.  Nothin' with any sheep like features here. Hey - Ya know where they get virgin wool from? Yup. Ugly sheep.

[OnAPrettyPoison]

I just did my pegasys and obviously the snap on needle was not tight and I saw part of it drip to the floor.  Should I do another or just not worry about it???  HELP!

[lionesss]

I wish i could understand your hb values.  My hb is 130 here in oz (within range)they don't transfuse till it drops below 90.  does anyone know the conversion?

[Wasabi Pea]

Thanks!  I'm glad to hear you're doing better.  Are your docs planning on using transfusions to keep you on tx?  I tried to get mine to do that so that I could continue on full dosage, but they were real leery of it.  So although I had no problems with the full dosage of peg, the riba was another question.  

Actually, the sudden drop from 9.0 was due to a short-lived two-week effort to increase my riba from 600 daily to 600/800 every other day, which works out to 700, I guess.  At least I know the precise balance point between my procrit and riba.

Anyway, I'm starting the countdown.  I can't wait.  4/20/06 is my last shot, which will be #61.  Will probably take riba a few days after that shot, and I imagine I'll continue on procrit for maybe another month.  I haven't discussed that part with my doc yet.  But if the hgb doesn't make its way up in the next two weeks, we may either have to cut it short (ha, ha) or drop the riba to 400.  

I don't know how you managed on 7.1 though.  I think the lowest I've been is 7.6, and I usually become a spineless jellyfish when I hit the 7's.  I'm very glad to hear you're doing well and feeling good.  How far are you along in tx?  Are you doing 24 or 48 weeks?

[lionesss]

susan: ouch! hopefully someone in here can help you with your question.
Shan: I am on 800mg riba ( my weight 130p). think I am on 100 of pegatron. doesn't seem like much compared to everyone else. also on 20mg citalopram, antioxidants and herbs.
Frisco: love your laughing story.  I was so tense prior to tx that when I actually started and faced my fears my mood lightened up, maybe that is what is happening to you. I am on shot 4/24. so not much further then you, and generally still cruising.

[Mister beagle bailey]

You are a real trooper, you and I have the Thalassemia and 2 weeks ago my HGB dropped to 7.7 then last week to 7.1 so last Tues. had a blood transfusion.  I now feel great and will cont. on full meds, but I felt great even with a HGB of 7.1.  With people like us I guess it affects us different, where others can't even get out of bed, etc.  I'm so glad your almost done with txs.  Can't wait to hear of your last PCR results.  You must be so excited I know I would be.

          Beagle

[omyst]

Hi

Tonight is shot 43/48, but I think I am getting the flu ( sore throat, ear-ache, etc ). My daughter has had it since Monday, she had a fever for three days which peaked at 103. I am waiting to hear from my doctor, but I was wondering if anyone had a similiar experience. If I develop a fever I am a bit leary of doing a shot tonight.

Thanks

[wMich]

Hello Shanaenae,
FYI, my meds are Pegasys 180 mcg/week and Copegus 1200 mg/day. I'm told dosing is sometimes weight-based and that there can be other factors involved in dosing. Almost half way through my anticipated 48 week treatment I was switched to generic Copegus (Ribasphere)in December 2005 and to a different generic (simply labeled Ribavirin) a few weeks ago. I have sensed no difference between the three types I've taken. Other than a daily iron-free multivitamin, thats it for me so far. Week 35/48 begins tonight for me. Good luck and take it a day at a time :)
   - Lee