What to expect?

[linthomas]

Hi everyone, well it's still me the soon to be kidney transplant patient. I hope. Picked up Pegassist yesterday, Those are some big needles, just wondering what to expect next wk, will be taking Procrit the day before and I already take Xanax, so I'm just wondering if the sides may be worse because of the renal disease, I'm pretty stable as far as medically. Just getting nervous about starting. Any words of wisdom would be greatly appreciated. Thanks Linda

[danity]

Thank you for your comment. I had to laugh a bit because you hit the nail on the head. I

[linthomas]

Hi, I definately appreciate the advice and has I dehydrate real easy I watch my fluids closely, as for the Xanax, the Procrit kinda keeps energy up as long as I keep moving, since they have increased it to once wkly,I find myself practically skipping along,Yep the Xanax I have to right now, they made me kinda spastic when they threw me in dialysis and I do mean threw, and that was because of dehydration. Plus I've quit smoking so I'm kinda moody now anyway. Should I take anything before shot to help I mean my meds are outrageous anyway, 3 BP meds, singulair,sodium bicarb, xanax, vitamins, procrit you name I've got em', phenergan,it goes on and on. Anyway the closer it gets the more anxious I get. I just want to do it and get it over with. Thanks for advice. Linda

[Sal D]

I was on peg/riba for 48 weeks and have been virus free for 3 years
I took my shot every friday night at 7:30 (make sure you do it the same time every week) After taking the the first shot i woke up at 3AM like a truck hit me and was very sick Sat and Sun
The folowing weekend was about .5 as bad and gradually it got even easier (But it was still like injecting the flu every week)
Things i did to make life easier:
I Drank 12 bottles of water a day ,i cant impress upon you how important that was..please check with you doc because of your kidney problems.
I Stopped using caffene the week i started the shot (that was not easy but the shot was worse).
Ibuprofin worked miracles for me.Once you get the hang (timing)of when the waves of feeling sick hit you, you can time the ibuprofin about an hour before it hits. i knew every Saturday morning at 10:30 i got real sick so if i took the ibuprofin at 9:30 it was not nearly as bad.
I do know taking xanex will sap your energy becasue i am on it now, do you really need to be on it?
Everyone has a different to the treatment reaction but remember what i said about the water.....
stay strong
Sal
  

[chellski]

i was undetectable <50 at 12 weeks (im type 1; vl was 1.5mil; grade 2, stage 2 bx) next time im gonna get the more sensitive test that goes <2 (i may have my things backwards <>?)
good luck to you!
michelle

[Laika]

One day at a time is the best way to do it.  It's not a good idea to think you will get all the symptoms you read about...will just make you anxious.  I have just finished treatment a wk ago (24 wks, geno 2, 58 YO F, stage 2, grade 3).  When I first started treating, I was very anxious.  The sides were very disturbing to me--I thought of them as being unrelenting throughout treatment, piling upon one another, more being added to the pile as treatment progressed.  In fact, that is not the way it was at all.  The sides come and go.  I would get nose bleeds, for instance, and imagine having them daily throughout treatment, imagine having them while driving on the interstate, or standing in line at a store.  In fact, I think I had 5 during the 24 wks, all in the a.m. at home.  Another time, I started getting very lightheaded, like I was going to faint.  Sitting down didn't relieve it.  I began to worry about fainting in my car etc.  Anyway, that lasted 2 wks and then I didn't have it too much after that--only when outside in the extreme heat.  Once I began to understand that every day was going to be different, and that just because I got a weird symptom today doesn't mean it's going to be there every day, I was able to relax better, and more or less roll with the roller coaster.

BTW, the nosebleeds are not nec. a common symptom.  What happened with me is that the drugs stirred up trouble with my weak spots; I had surgery on my sinuses long ago, and they were therefore susceptible.

Anyway, the beginning is the worst part!  A very anxious time.  Good luck to you.

Laika

[jmjm530]

Just to clarify, they're studies both ways as to whether Peg Intron or Pegasys is more effective in regard to SVR.

Yes, Pegasys is more "time release" but Peg Intron hits the virus like a "hammer" the first couple of days. Without going into detail on customizing the drugs (dose and frequency) Pegasys may be better for some and Peg Intron for others. I believe some doctors have played around with using them in combination.

But remember, Infergen isn't a Peg (not yet), and it may be the best of them all but alas no studies yet in tx naive geno 1's.

-- Jim

[jmjm530]

I'm glad your GI is keeping tabs on you. See if you can get her to do the PCR every two weeks as well. I think you may get down to your target number sooner than she thinks so why keep staying on the stuff if you don't have to? Also, a week #1 CBC isn't a bad idea either with your compromised kidney function. She's probably right not to expect anything but why take a chance?

-------------

Regarding the shots. Most people have the most success injecting where they have the most fat.

In many cases, including mine,  that's the abodomen. There are charts on the Pegasys web site and probably with the materials your GI will give you.

Basically you have a lot of choices in the abdomen/love handle area but you're not supposed to go near the belly-button or directly on the waistline. I alternate upper right, upper left, lower right, lower right. If you have a lot of fat on your thighs or upper arms, then those would also be good spots.

All the best with a fast and successful tx.

-- Jim

[MichaelT]

To your first question, yes. The pegylated interferon provides more constant anti-viral action over a longer period of time; PegIntron doesn't last a week, but Pegasys does. The three times a week dosing of non-pegylated interferon was criminally irresponsible, since most of the week was spent without the interferon!

Interferon provides direct anti-viral action. If you inject interferon, the viral load goes down (okay, a tiny minority of folks don't have this happen, but mostly it is so) and as the interferon breaks down, the viral load goes up. So three times a week dosing of regular interferon permitted too much time to the HCV to play and reproduce. With pegylated interferon, direct anti-viral action is realized almost all of the time.

Sorry I can't help with the second question. God bless!  -Michael

[hiya24]

Yes, you are almost half way there!! Way to go. Be sure to reward yourself frequently. Ice cream is my personal favorite!!

How is your VL going? I had a 4 log drop at 12 week. And almost another 2 log at week 25. I may be faced with either stopping treatment if I don't clear soon or continue treatment passed 48 weeks in hope of achieving SVR. My odds of SVR have decreased since I didn't clear by week 12 but I am still hopeful that this is going to work.

[chellski]

hiya24:  hey! congrats on getting to #32!!  I'm doing #20 on sunday nite!   way to go - you're almost there!

linda:  good luck with you tx - as stated above it's amazing how time flies....it seems like i was just making the decision to treat and here i am, almost halfway thru!  (hopefully, i'll just have to do 48 - if its 72, so be it)

good luck!

michelle

[polejumper]

Always think positive,with me I made it through 4shots thinking all I read was,nt going to happen to cause I breezed through the first 4 with no side effcts at all ,thinking I've got this licked .5th week started the opening of the gates of Hell for me.That was just my expierence,so I hope your's is all a cakewalk.Goodluck.

[friole]

In the progression of all of this, I figure we are the class of '06. I am in second grade and you are about to enter first grade.  Fortunately there are a lot of graduate students here (those with SVR and those on their 2nd and 3rd rounds of tx to guide us all on our way. Thank goodness for all the levels of knowledge here.

[danity]

hi kathy, thank you for input & your right. last year biop showed grade 1, stage 1. i still don't understand everything about this disease, but i do know i dont want to wait to see if it conts to get worse. i'm ready to try my best to nip this in the butt & i have a feeling that with good people like you out there going through the same thing will make us all stronger. sharing our symptoms & progress (good & bad) during this will make us feel like we are not alone. family support is good but i think its hard for family to completly understand some of the feelings we might be going through. being able to vent & compare will make this easier. i start my tx in about two weeks. doc said had to go through ins co & order. said would go through a class on how to give shot. will get 1st shot @ docs office then will start coming to home. have you started your tx yet? if so how was the 1st shot? that's the one i'm concerned about. i think because you read about all the symtoms & think there all going to converge on you right after they take the needle out. i mean i know that's not going to happen (right),but after the 1st shot, 2nd shot you should know how you body will react right?. i know some have said they have breezed through without so much as a runny nose, some have not. i guess its just one day @ a time or 1 shot @ a time huh. you all are great & i pray for smoothe sailing for all of us. everyone please keep me up to date on your txs, sx & i will do the same. sometimes i just ramble on so if you want me to shutup sometimes just let me know. i ramble a little when im nervous. God Bless, everyone.

[friole]

Lin-  Holy Cow, you have been thru heck.  I take the shots in the abdomen, below the navel.  That is what is shown in the picture I was mentioning that comes with the Pegasys rx.  However, in video that came with the little "welcome" pack the shot is given above the navel.  I guess anywhere there is fat is fine.  You definitely would not want to give the shot through scar tissue.  You are right - those safety things do make the needles look big!

Danity - mild to moderate inflammation probably means Grade (of inflammation) 1 or 2.  The biopsy should also indicate the amount of fibrosis (scarring).  I would guess that if you have moderate inflammation, you would have some degree of scarring (like Stage 1).  My biopsy was grade 1, stage 1.  I am a 1a too so lets fight that virus together!  I think we can do it.
Kathy

[iceboy]

Best of luck linthomas.

I have come a cross some general reading that it is a better chance for SVR using peglyted interferon once a week rather than three shots of interferon (alfa 2 I think?) Is this the general believe now?

Also, if there are some "close calls" but not "good enough" on week 12 or 24 and discontinuity of treatment is being discussed, is there any history of swapping over to different type/make of interferon? Just curious.
all the best

[danity]

The doc went by my last liver biopsy. Said had mild to moderate inflammation & @ that time my liver enzimes were within normal limits. Doc said type 1a harder to treat & that vl did not mean a lot, but mine were very high. He said that @ 51 & with liver enzymes twice as high as last year needed to treat now. Said did not want me to wait for the possibility of new drug coming down the pipe in a couple of years. Said I had family and friends around me & treatment is indicated. I

[linthomas]

Just looked at syringe again in bright light, they are the 27 gauge and I must have been looking at them wrong because I see they are not huge, I really don't like needles so my imagination must have been working over time, I guess in the mist of the whole thing I made them bigger, but with those safety things on them its hard to tell. I think I'll stick to thighs as far as shots, I just don't think I could do it in my stomach, it sounds painful, plus I'm burnt from waist up when I was a teenager, and the skin grafts are kinda tough in the stomach area, Thanks Linda

[friole]

Where to put your shots -- when you open your Pegasys box, there will be a couple of papers in there.  One on them has kind of a map with suggested places to do your shot.  I have been alternating - left thigh, right thigh, left side abdomen and right side abdomen.  I find the abdomen tough for some reason, but once I get the needle in it is fine.  My needles (I looked at them tonight) are 27 ga 1/2" long.  Is that what you have?  I do not have too much of a reaction from the shots -- I can see a slight black n blue mark about the size of a dime for a few days after.
Kathy

[linthomas]

I forgot to tell you the GI said she would be checking blood every 2 wks and PCR mthly, since I'm not taking riba she said the Peg wouldn't effect blood count too much. Another question was if it was prefilled syringes, it is. But the needles still look awfully big, I'm gonna ask her about them Tuesday, another thing I was wondering where is the most common place to do the shots, I put the Procrit in my arms with 1cc syringe. I'm been reading and re-reading the posts and I feel so much better than I did when all this started, You all have given me hope for which I'm grateful. Thanks Linda

[jmjm530]

Danity,

I would get a biopsy before making any treatment decisions.

If it turns out you're stage 0 or 1, you have options.

But even if you're going to treat no matter what, a biopsy will give you a baseline level of fibrosis that can be very useful both during treatment, or in the event you do not SVR. In lieu of biopsy, you can request Lab Corp's Fibrosure test.

Your doubled viral load has no significance (it could triple next year or it could halve) and IMO the rise in your liver enzymes is insignificant. I've had much wider variations before treatment and my heptologist just yawned.

-- Jim

[friole]

You are among friends here.  It does sound like the time is right to treat.  Hard decision, to be sure.  You can read through the threads and find every kind of side effect imaginable.  I made my decision to treat last month and will be taking shot #6 tonight.  So far, for me things have gone very well.  I did not have any reaction to the shots.  Overall, after 5 weeks, I find myself more tired, but not every day. I am changing, but the treatment, so far for me, is livable.

Are you going to request a biopsy?  It seems like the prudent thing to do since your liver enzymes are elevated.  Sometimes the doctors don't want to do one if you are going to treat anyways, but if you push for one, they should do it.

If you do start in 2 weeks, the next 2 weeks will be hard.  Believe me, all the anxiety stops with that first shot.  Good luck,
Kathy

[danity]

Hi everybody, will my app w/gastro was this morning. not only had my vl doubled from last yr (like you advised me jmjm my doc also said vl can change @ any given time so doesn

[jmjm530]

Linda,

I think you've already demonstrated what a strong person you are to come this far. My guess is your short course of inteferon will be a relatively easy part of your journey to get a kidney transplant and eventually get rid of the hep c virus.

Keep us posted and best of luck!

-- Jim

[linthomas]

Thanks for answering, yes Tylenol is okay, I also have Ultram and Gabitril too. On top of everything else I have that fiba thing in my bones, can't spell it, it's mostly in my back. I swear sometimes I think I have to take a pill for everything, about 20 different meds. Thanks again  for answering, every little bit makes me feel better, take care Linda