HEPATITIS C COMMUNITY
start treatment friday 7-14-06

start treatment friday 7-14-06

Hi all
I am starting treatment on Friday.  Somewhat nervous...  any good thoughts for me
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Avatar_n_tn
On shot night I found it helpful to take advil about 1/2 hour prior to your shot. As everyone will tell you here drink lot's and lots of water throughout the treatment. Please know they everyones experince of treatment is there own and you may or may not experince some of the side effects you read about here.

Come back to this sight frequently stay in touch ask lots of questions and feel free to complain when needed.
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Avatar_n_tn
Thanks  I have know about my Hep for a year now.  I put off the treatments this long because I lost my daughter in a car accident going on 2 years now and I did not think I could handle both..  I am still grieving her death but the Hep is starting to effect me and I would like to clear it out of my body.  I know I can....I work  and I am afraid it is going to put me down.  I will try thought.  Thanks to all
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Avatar_m_tn
I actually use Tylenol PM a half hour or hour prior to injections as Tylenol helps with the flu symptoms and the PM helps me sleep better.

Orginally I was using the Advil as it is supposed to be easier on the liver, but my Doc advised me that Tylenol works better on the flu-like symptoms and if taken in moderation is not that much harder on my liver.
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Avatar_n_tn
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Avatar_n_tn
A friend of mine who went through treatment in the dinasaur days said he wouldn't do it again ever whether it worked for him or not, so I kept that comment with me for 9 years! (different treatment now) My doc told me each experience is different and some don't feel side effects, but I thought she was just blowing smoke... however,I decided this was the year to take charge of my health, and stop being such a chicken, so I just closed my eyes and dove right in with all I had. April 14th was my first shot, and you know what? I'm on shot 13 and wouldn't you know, I'm one of the lucky ones that barely have side effects from those shots (I take a Motrin 800 only on Fridays 2 hours after the shot). The pills take ajustment at first, but eating regularily (every hour on the hour!) was the key to that for me.
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131817_tn?1209532911
I took my first shot at night 7PM and the next day I had chills and fever, aches etc. all day. I kept waiting for something to happen that night and it didn't. Many people here have a rough time the first shot and then it gets easier after that.

Since then, I just took shot #12 an hour ago, I get the flu-symptoms either the next day or the day after that. This week I decided to take my shot eariler in the day to see if I could avoid the symptoms altogether and sleep through it. So at noon I took the shot and since it usually hits me 12 hours later, hopefully I won't know about it. I took tylenol the first shot, but haven't since, because the effects don't hit me right away. Usually I wait until they hit me to take any tylenol.

Everyone is different. Hopefully you will have an easy time with it all. Check in and we will be glad to give you lots of different advise! BTW Drink plenty of water! It helps with the fever and the aches.
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Avatar_m_tn
Never implied that you did have flu symptoms.  For the most part neither do I.

However, out of all those I have met, both personally and on-line, folks like us who experience little to no sx's are few and far between.  So I share what works for me and what I've heard from others work(ed) for them.

As has been pointed out many times, the bottom line is no one knows how the tx is going to affect them until they are into it.  I also have learned that, at leat with this tx, it is difficult to relate to what others are experiencing unless one has experienced it as well.
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Avatar_n_tn
You bring up the question that I have been wondering since I started coming here. What percentage of people experince side effects and to what degree. My feeling is that all of us experince sides of some sort. But you state that those who's side effects aren't so bad like ourselves are few and far between.  What do you base that opinion on? I hope not by the antidotail evidince of what you read here.
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Avatar_m_tn
One way to get some info on that question is to ask your treating doctor. I asked how my doc how many did he treat and how many did he see without side effects that caused them trouble or were lasting, required rescue drugs, etc. This was before I started and I was sure I would be in the "without" category if I did everything he said and drank lots of water LOL. Back in the days when logic and reason factored into my reality!
He said about 60% had sides, 40% did not. This of course isn't scientific. I guess one headache in a year would count as a "side effect" so not sure science would help us on this subject either. He went on to say that "most" people "get used to it" at some point in the treatment. I am sure every doctor who treats relatively large groups of people with Hep C has their own clinical experience to offer their info on this issue. Maybe someone out there who goes to a BIG place with lots and lots of Hep C patients can tell us what their doctor's say to this question.
Please, no one freak out I don't know if that is true/not true but that was what I was told so I am sharing it, I am not saying it constitiutes the true numbers across the board, I don't think stats like that exist. If someone has them, share with us.
I guess those "without sides" people aren't online much looking for folks in their situation! I sure wish I was among them!
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Avatar_n_tn
thanks to all for the feedback.  I will drink plenty of water and advil or tylenol.......I will be strong...
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Avatar_n_tn
i had chills so bad i could not get up to get a blanket. first shot only and not much after. i believe majority have chills the first shot.

my drugs come with a sheet that gives the the percent of people who get sides and the type and i believe that most get some sides sometime during tx.
it is a ride and the sides seem to change all the time?
good luck
bobby
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Avatar_n_tn
Hello-
I'm 5 weeks into tx -- gonna do shot # 6 on Friday.

I'M ONE OF THE LUCKY ONE'S WITH NO SX!!!!

I have to say the first shot was the only one that effected me. It took about 4 hours and I had fever chills and body aches for about 6 hrs. and then nausea for another three hrs. (I didn't pre-medicate.)

If I were you I'd take 800mg of ibuprofen about an hour and a half AFTER the shot. Because if you take it an hour before it will be wearing off by the time the interferon hits you.

After my first shot I was SO scared to do it the next week, but then after I did and NOTHING happened and the whole TX has been a breeze.
NOW I do get some flu like symptoms maybe about 48-72 hours after shot day. AND some fatigue here and there but NOTHING like some of the stuff I read about here.

Good Luck and let us know how it goes for you.
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Avatar_f_tn
I wish you all the luck in beating this.  You need the break.  Do come and post we would love to hear from you.
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Avatar_m_tn
I didn't get the impression anyone is saying they didn't believe the experiences posted here, I thought he meant that judging by one sector of people alone to try to make an assement from a isolated group is not representative of the treating population at large and not necessarily representative of what will happen to you when you are contemplating treating. Who really knows what the true numbers are, even the doctors have to use an educated guess because this disease affects each person so individually and is dependant on so many individual factors. One thing I do know for sure, when it is happening to YOU it is hard to cope with. I know I envy those that drew the lucky card and aren't having sides that are debilitating.
It is easy to misinterpret someone's intent online and take it the wrong way plus so many of us are drug influenced and our cogitive skills are at a low ebb, our messages aren't always perfectly clear, at least I know mine aren't. I have been read completely opposite of what I was trying to say more often than I care to admit!
The people that are feeling pretty chipper attribute it to many things, keeping working or water or eating organically, etc.  but we don't really know why some have it hard and some have it easy, it could be those things other things or something else entirely at work. We do know each person's experience is unique and real. The good, the bad and the ugly.
By the way, you have a nice moniker. Every time I see it it reminds me of riding my horse thru the big old oak trees up in the hills. Someday maybe I will feel up to that again!
Hope you are feeling ok and kicing some dragon arse.
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Avatar_m_tn
Well, as I am one of two out of thirty my doc is currently treating, I'd say the evidence is based upon more than so-called antidotal you say exists here.

But then, if you do not believe the experiences folks are relaying here, than by your same logic, we should not believe your claims of having no sx's.

I for one would prefer to be optimistic and give a person the benefit of the doubt that when they say the feel like ****, hit by a bus, train, or a Mac truck, that perhaps they really do feel that way instead of dismissing their claims as being lies.

But hey, let's not be antidotal and quote "http://www.fda.gov/fdac/features/2001/401_hepc.html"

"About 10 percent of patients have virtually no side effects. Approximately 10 percent have very severe, almost disabling side effects and have to stop work or stop the drug. The remaining 80 percent have side effects--but they are tolerable."

Then again the PI for peg-IFN and RBN can probably speak for themselves that the evidence is more than antidotal.
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Avatar_n_tn
I was nervous, too.  So nervous about everything I read & what my Doc told me, I put it off for several years!  Got myself so worked up before first shot, I could hardly inject as I was shaking so bad.  I expected everything to immediately change in my life after that first shot.  That night I woke up to chills & aches, cold sweats, etc.  When I woke up in the morning, I expected to feel sx -- I was almost willing myself to feel sick, but for some reason, I didn't.  I don't know if it was all the water I pounded down or whatever, but that was pretty much the only time I had a prob -- the first night.  Pls remember everyone is different, some sx are terrible, some are bearable, & some are very mild or none at all.  Try not to get yourself too freaked out, it may not be as bad as you think.  If it is, find out beforehand from your dr. what you can take for sx.  I wish you much luck with your first shot...  Pretty soon, you'll be an old pro!  By the way, how long are you on tx?
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Avatar_n_tn
Thanks to everyone.  I am going into this treatment with a positive attitude.  Thanks for you support and I will let you know how i am doing.
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Avatar_m_tn
Man, 72 weeks AND you work full time ad have two teenagers! I am amazed at you, especially since your Hgb is below 10. Wish you could bottle that and sell it, I'd buy some!
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Avatar_f_tn
LOTS of good thoughts for you!  That is the BEST thing you can do for yourself stay positive and don't give up! This disease can be beat we have to fight (and suffer sometimes) but...we CAN WIN!

Make sure to take the two tylenol before the shot ... it's GREAT advice and make sure you are very well hydrated by drinking water.  This stuff dries us COMPLETELY out...

I take my shots on Friday night and then have my 'day of rest' on Saturday.  I do as LITTLE as possible except lay in bed with the remote. It's MY DAY and nobody not even my kids bothers me much.  Even when I DONT feel any side effects I STILL REST UP as much as I can so that by Monday I can make it back to work.

It's not fun but it's doable so keep your positive attitude and i KNOW you will have success!

Remember...we all understannd what you are going through so if you have any questions or just WANT TO WHINE...come on in here. It's the one place you can go and just say "oh i want to cry I dont feel good" and people will UNDERSTAND and not treat you like a baby.

PS Did the doc put you on any antidepressant before you start? It's a GREAT idea it helps a LOT.  also many of us take sleeping pills because the meds really mess that up.

I take my 2 tylenol AND my 12 hour Ambien when I take my shot and try to sleep through as much of it as possible.

I am on about week 43 of 72 and a Genotype 1A and also 1B.  Was undetectible somewhere between week 12 and 24 - it's not always easy but you learn not to let it beat you!

Debby
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I am fortunate to be seen by probably one of the most well respected hepatologists in the world, as far as HCV  and liver disease is concerned.. My Doc is the one that usually writes the papers, and presents the conferences that other hepatologists rely on for education..
When I asked the question about sx's......He responded by stating that in his "history" of treating, he has only seen TWO people ever that experienced NO sx's whatsover.. Everyone will be effectd somehow.
I was fortunate enough to experience near nothing at all as far as sx's during tx.. I needed no rescue drugs, no real problems sleeping, skin, etc. I did break out in a rash late in tx, but went away quickly and is thought to be a reaction to wife changing laundry detergent. Other than that, I did get a good case of anxiety towards the end of tx, but this is 100% common as stated by my doc, because we instinctively want to end tx.. WE get close, and just want to be done, so we are prone to anxiety attacks. And of course I suffered from fatigue in the later weeks of tx..Also, mild bouts of eating problems and nausea....But as you can see, I faired VERY well.
Post tx is another story though..
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131817_tn?1209532911
Me too!
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Avatar_n_tn
Maybe my comments will help since my treatment was not as grim as alot of the others, When I started treatment a year ago of course I was very nervous, it was really the fear of not knowing how the side effects would bother me, after the first shot it took about 36 hours for the shot to produce the sx,fever,cills all of what you heard before after that it got better every week, the hardest part for me was being a stay at home dad with a 2 and 4 year old to take care of, they just did not understand why I did not want to go outside and play t-ball everyday and my short temper did not help either but when I received my first viral count it all seemed worth it,probably 5 months into the treatment of a 6 month therapy the rebetol started to take its toll but it was still tolerable, my advise to you would be not to re-arrange your life over this.the only thing I added to my diet was plenty of water and gator-aid,the last thing I was worried about was if I cooked my french toast in a cast iron skillet!!!!!!! now I am clear of the virus,The sx lasted about 3 weeks and I was back to normal, of course everyone is different, staying home with 2 kids was the hardest part, punching a time clock everyday would have been a walk in the park.
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Avatar_n_tn
Good Morning All
Today is the day I start my therapy.   I am very nervous.  And scared.  I pray everything goes ok, a year is a long time.  i have a Dr's appt at 11am...Time to shower and go.
thanks to all of you for your input on this.

PSL
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Avatar_n_tn
Well I took my first shot yesterday.  That was pretty tense about  6 hrs later.....Ache,shivers...i took some advil, then finally took couple sleeping pills and it calmed the shivers and allowed me to rest.  Today I am still achy but now this evening I am starting to feel better.   My question is will the next shot, next friday do this to me..
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