starting theraphy: Ribarivin

[mauka]

I gotta start theraphy this friday nite.
Should I take ribavirin and peginterferon at the same time?
Or can I take the shot and pills at different times?
Since I dunno what to expect I was thinking about doing the shot every friday nite
and take the pills twice a day.

The loss of hair happens to everybody and right away??

I'm flippping out...are there any people suffering just a little side effects?

[ketka]

I have to start with theraphy next week. But readins this posts...it is more easyer (sorry for my English). I have just one question...did you losa a waight during the theraphy??

Thank,

Keti

[mauka]

I just took my first shot 10 minutes ago,,,,

geez I was flipping out......thanks so much everybody

[mauka]

That's an interesting point of view, I'll try to focus on that too! :)
Thanks.

[mauka]

what is the difference between Peginterferon alfa-2b
and PEGASYS

[mauka]

I'm amazed from the support in here, you all are helping me a lot and I sure
will try to support others beginning theraphy once  I'll get over my fears and get used to it.
Thanks so much!

[dutch_boy]

Mauka, It is 18 weeks ago I started treatment and it already feel like ages ago.  Time will fly by doing this I promise you.  It won't be long before your anxious feelings dissipate before you take your shot. I too like wheatgrass was so nervous while doing my first couple shots I shook like crazy!  Now it is so easy and no anxiety at all! In fact I look forward to it as I know this is working and killing the virus!  You must imagine everytime that you are helping yourself become healthy and your worries will fade away. My first several shots hit me quite hard....flu like symptoms mostly, itching (which stopped after about the 3rd shot), and bad headaches which were difficult to deal with. All in all I did very well however compared to my fears of what I thought it would be like! Drink tons of water (1/2 your body weight in oz. is reccomendation). Don't skimp on the water as you WILL feel the interferon more!  Sun will make you very sensitive as cuteus mentions.  I had and still have lots of dizzy spells mostly caused from anemia which is very common but treatable with Procrit.  I did not find the Interferon shots to be painful although I do get the nasty skin reactions at the sight for about 2-3 weeks each but not a problem.  The Procrit shots I find much more difficult as I do find them painful but have gotten used to that as well. I take my pills at 9a.m. and 9p.m. and on Sunday nights I take my Interferon shots at 9p.m. with my pills...makes it easier to remember.  Also a weekly pill box is invaluable....you almost CAN'T forget to take the pills everyday at morning and night. Put it in a spot you see it all the time...mine is next to toothbrush! Hair started falling and thinning at week 14 or so.  Not terrible yet but I seem to notice it more than others. Everyone says it just thins but no one looses their hair completely ..don't worry too much....it is worth it if the treatment works!  Everyone here will help you through the maze of questions you will have so ask away.  Your friday shot will have the most "fear" involved but remember: this will become easier I promise!
Scott

[scruffy]

I think the peg-intron may be pre-mixed now and in something called a redi-pen? My treatment was a year ago and so I had the mix and fix stuff. Someone with a memory correct me if I'm wrong please. frank

[mauka]

Thank you for your support....
is Pegasys >Peginterferon?

Does the liquid burn when you inject it?

[cuteus]

you hardly feel the liquid, I did the pegasys, it is made by Roche. the other brand is made by Scherring. you will be mastering this in no time, be careful about exposing your skin, especially shot site, to the sun. I was warned by the dr, but did not understand that one. until I got sun on the shot site, after that I was very careful. I think pinching desensitizes and ensures that you are not injecting in muscle. some use ice on the site to desensitize. I did nothing but pinch.  don't leave the dr's office with unclear instructions.

[nanniegea]

No, it does not burn but you MIGHT feel a small sting when you first inject...no big deal, lasts for a second. Remember to let your shot come to room temp for about an hour before you inject and also, inject where you have the most fat. Best of luck to you.

[scruffy]

Are you doing peg-intron or pegasys? The pegasys is refrigerated and should come to room temp before injection to decrease discomfort. The peg-intron is mixed powder and liquid and will already be at room temp. I took the two riba doses(copeg or riba same drug) at 9:00am and 9:00pm cause it helped me remember to take them. Some have trouble sleeping-I did'nt till after treatment. Hair thinned after about maybe 15 weeks and few even noticed(I'm male and cut hair shorter) Try not to overthink it-just a another chapter in your life-could be a long book. frank

[cuteus]

welcome to the tx wagon! make sure you understand all the instructions for your tx before starting, ask specific questions from your medical team.
Each practice likes to do things their way and it is not always the same as what many of us have experienced. Again, ask YOUR dr how he/she wants things done.
My dr instructed me on how to do the shot, well the tech did, and even though she watched me, she did not tell me to let go of the pinching once the needle was in. I kept pinching for weeks and the liquid sometimes spilled out of the pinched skin.  ASK specific details.
I did the  1st shot Tues afternoon and took the first dose of riba. after that riba was sometime in the AM and sometime at night, never the same time, which could be why I forgot doses many times. DO it however it works best for you.
You can ask your dr about the sides his patients have experienced, mine said that some experienced none at all.
The hair starts falling out months into the tx, I think it has to be related to the anemia that will surely come, worry about that more than about your hair. It grows back. Most people do not suffer ongoing severe sides. They come and go, and most are an annoyance and moderate discomfort that stay with you for months. That makes it a tiring experience. Don't fret too much and don't read too much about sides, it will make your first shot worse than it could be.
the sides also are related to the type of interferon you choose. Pegasys seem easier to handle for many.
ask your dr, pester them for clear answers.
good luck

[mauka]

mine has to be mixed (liquid and powder)

[jaroman]

I just did my first shot last week.  Tonight is #2!
I am not sure what would be the "best" time b/c I don't know if it prevents sleep, etc.  Some say to take Tylenol PM before the shot.
Don't worry too much.  The first shot is not nearly as bad as we think.  I didn't get much discomfort right away.  Now my leg muscles feel fatigued or uncomfortable and the first shot site is also red and bruised, like Cuteus mentioned.
Good Luck!

[mauka]

"now my legs and muscles feel fatigued"

Thanks Jaroman,,,,,not that bad at all then huh?
I'm very happy for ya :)

I hope I'll be the same.

Thanks

[Hawk370]

Like you I was very concerened about sx.  For me it was a waste of time worrying.  I was only on tx for 12 wks but had very few sx.  I took my shots at night and split my riba to morning and night.  My dr. also told me to take 2 benadryl and 2 tylenol about an hour before my shot.  The tylenol tends to be a little contraversial, but my dr asured me that small dosage would no harm me.  I also found several sights that confirmed this.  I had no injection sight pain, just a little brusing about 3 days after shot.
I hear about some people forgeting their bibo.  I would suggest a weekly pill box that you fill once a week and then keep it in a visible place.  Sometime I had to go look at my box to see if I had taken my meds.  My memory is very short.

Good Luck

Freddie

[cuteus]

your skin becomes hypersensitive to temperature and UV light, it is a precaution, mostly.  My shot site became enlarged and bruiselike and lasted over a month before dissappearing, it freaked me out. Just take extra precautions. As for the eyes, I did not get a baseline test, but had one a few months prior, so they could use it as a baseline for changes. I would also get a thyroid and cardiac baseline to detect early troubles if they happen.  SOME, not MOST people develop troublesome conditions while on tx. and they are not fatal.

[mauka]

thank you wheatgrass (and everyone else)
your post litfed me up some :)

[mauka]

Thanks for your suggestions:)

Why avoid sun and have my eyes checked?
I'll be doing it for ONE year.....geez

[gr8faith]

Remember to drink lots and lots of water.  Keep it with you all the time, this is so important.  And yes, avoid the sunshine or wear a hat and sunscreen, and sun glasses are a must.  Did you get your eyes checked yet?  How long will you be doing the tx?  

I have found tx to be managable, not a cake walk but I can think of far worse things to go through.  My hair has thinned quite a bit, but the new short haircut I got has made a big difference in how I look and feel, for the better.

Good luck

[wheatgrass]

It's hard to know how your body will tolerate it, but you are not neccessarily condemned to 48 weeks of misery. I am in week 14 of Pegasys + ribavirin. I was expecting to be sick in bed the first week of treatment. I was so nervous doing the first injection (and I HATE shots and needles) that I shook enough that my wife thought I was going to inadvertantly fling the syringe across the room. I was afraid I'd have some kind of horrible reaction. Well, I felt nothing the first week. I felt better than normal the second week. During the first 8 weeks I only had flu symptoms a few times, and with advil, they only lasted an hour or two.

Now I have itching and fatique, sometimes quite pronounced. I don't like it, but it's definitely tolerable, and all in all, the side effects are not nearly as bad as I was expecting (knock on wood).

When people said the injections would become no big deal after awhile, I didn't believe that would be the case for me, hating needles as I do. But now, surprise, it's no big deal. The needle itself is kind of small and usually I hardly even feel it. I don't remember ever feeling the liguid itself as it goes in. The only bad thing about the shots is that it reminds me I have this damn disease, which pisses me off, so I usually go wash dishes or something to mellow out afterwards.

Good luck. I hope it all works out for you.

[layla]

I did not have any sx for the first few months. Then I ended up losing my thyroid and felt terrible but had that not happened I was fairing pretty well. I think people who don't have many sx are often not on the forums. Like everyone says it's so different for each person you will just have to see how it is for you.
Often people takes their shot son Friday night thinking they will feel worse the couple days after the shot and it would be best to feel bad on a weekend so they are not feeling so bad during the workweek. Pegasys is released into the body right away and this would hold true for that but pegasys is release more slowly into the bidy peaking about 4 or 5 days out so that would be different. I took pegasys and did findmy sx to be consistent with that. I did start my shots on Friday after reading forums but id doing it over (Yikes!) I would have chosen Wednesday. I took 1/2 my riba in the morning then the other aboout 2 or 3 in the afternoon. At first I took the later dose in the evening but I found I slept MUCH better if I took it earlier rather than a short time before sleeping. My doc hehatologist said it's not that big a deal when you take. The hair loss for me started about 3 or 4 months into tx. It just thins for the most part. Only people close to you will probably notice.The anxiety of starting tx is very nerve racking. I hope you have a good week, just try to keep you mind of it. You will be a pro ata it in just a couple weeks. LL