Side Effects...When do they usually start?

[BMoreThanB4]

Hello Gang...new to the group, I just happend to come across this group yesterday and found a lot of the topics really helpful.

I was dx about 4 yrs ago and have gone from stage 2 to stage 3 in that time.  Yesterday, I visited my doctor and we decided that I would start therapy.  

I am taking the weekly shots (Pegasys) and the Riboviron twice daily.  I've been really anxious about starting therapy b/c I have a very demanding job.  This was mostly the delay in getting started w/treatment.

I took my first shot last night...and honestly expected to wake up "crazy", but was happy to wake up just as any other day and I felt nothing.  I'm one shot and two doses of pills in and so far so good.

My question: when if ever did most of  you begin to exprience the side effects of your therapy?

Thanks for your help and glad to be a part of this community.

T

[desrt]

It seems to depend partly on which form of PegIFN alpha you are on. A lot of people taking PegIntron experience the full range of side effects within hours of their first shot. Many who use Pegasys take 5-6 weeks to build up to that point.

[babs824]

GO JAMES!
tre; u are off to a good start. stay close and ask lots of questions. best to u both, babs

[BMoreThanB4]

I am so very appreciative of the information, advice, and encouragement that you all have shared with me. It has really helped to hear it from those who are in a very similar situation.

To James10500 - Congrats to you for making it to the end...I can't wait to share the same triumph with the group.

Again thanks to all. I look forward to learning and sharing in the community.

Tre

[RobertBeWell]

A lot of people have relatively mild side effects. Most likely what you'll find, since you didn't have a bad initial reaction (which is often the worst) is that as time goes on you'll just start to notice little funny things - an ache here, maybe some skin blemish there, who knows.

I've had all sorts of little weird things like that, but nothing that altered my schedule one bit.

Perhaps you may be one of the lucky ones too.

RBW

[James10500]

It's so different for everyone.  My first shot after 6 hours it really hit me hard.  Massive joint pain and in bed shaking like a leaf with chills, even though it was 96 outside and no A/C on.  The RIBA takes a while to build in your system and feel sx, you won't feel anything after one dose.  

Today 1/21/11 I did my last shot. I don't know if I was tired from work on Wed,and Thrs but I slept a few hours after the shot.

Good luck with tx.  

[Kathy73]

Sorry, meant to be for BMoreThanB4! Guess I still have some of that "brain fog".

[Kathy73]

I treated SOC for 48 weeks and only missed one day of work in a stressful work environment. I would inject on Thursday, really feel the fatigue on Saturday and Sunday and slowly start to recover by Monday. I usually felt pretty good by Thursday when I'd start it all over again. What worked for me was only doing what I absolutely had to do and what I was up to doing in the evenings and on the weekends. I felt that if I didn't "baby" myself during those non-work hours, I wouldn't be able to do the 40 hour work week and 10 hour work week commute. I regularly (morning and night) put lubriderm on my body to (hopefully) prevent riba rash. I don't if that was the reason, but I didn't get the dreaded rash. I drank water all of the time. In fact I'd have 2 to 3 plastic cups of water at any given time on my desk. I guess I had a real "drinking problem". One of my sides was a super dry mouth and sometimes my tongue got so dry it would get in the way. Also, I seemed to be prone to "riba rage" so it was a good thing for others around me that I started on anti-depressants before tx. Anyway it all worked and I've been SVR for over a year.

Hope this helps. Kathy

[daveb4824]

I just completed 60 weeks in Dcember.  My side effects were for intestinal and fatigue than anything else.  I had good weeks and bad.  The one regret I have is not joining a gym during therapy.  I gave in to the fatigue and I think suffered a lot because of not getting into an exercise routine.  If I had it to do over again (which hopefully I don't GET to!), I'd work harder at keeping moving.  I think it really would have helped with the aches and pains, the mental part of it, and the fatigue.

[babs824]

welcome and best of luck. sounds like a wise decision. i have had really no overt sx from interferon. no flu, injection site issues etc. so few sx i started to wonder. the riba finally kicked in with its set of sx and i have had most. none have been debilitating but more than annoying. the rash and itching is my worst so far and this is my current sx battle. i have been anemic since the start and this causes some sx that are predictable but manageable if job is not too physical.
you will get good advice here. best to u, babs

[nygirl7]

Suzi,

Drink more water - you should be drinking half your body weight in ounces a day at least. For example if you weigh 120 drink 60 oz. that helps a lot. Three weeks into treatment you shouldn't really be feeling this badly. There are things you can do to alleviate the conditions we all go through (ie: the insomnia). Doctors prescribe Ambien and it helps you get at least a few hours. I don't know what kind of 'ache' you can have after only 3 weeks, most folks get the ache from taking neupogen which can cause bone pain but I dont think you are on that - but perhaps it is something you can address with the doctor. Most docs will give you some painkillers for the hardest of days.

Taking tylenol with your shot helps a great deal.

Treatment is rough on everyone but as Diane said remembering what end stage liver disease is like makes it a bit more tolerable, you remember why you are doing this and it puts it into perspective.

[suziray]

im 3 weeks into tx, cant work, ache to much, feel rough after jabs, tabs make me feel weird as well, insomnia getting a pain, positive thinking is the way to go, be strong, suzi.

[Cory255]

Sides were the worse the day after my injection.

"I was dx about 4 yrs ago and have gone from stage 2 to stage 3 in that time. "

Thought I'd post this study as it might be worth taking a look at.  Everyone progresses differently by the way, no one knows why.

http://www.natap.org/2010/HCV/041510_06.htm

FYI, hcv is not always a slow progressing disease(generally is though).  Some people can progress faster than you think. Keep in mind, the more damage you have the quicker fibrosis occurs.  Which makes the case of getting a biopsy that much more important.

Results from the study (one of the most interesting studies Ive read so far) quoted up above, Conclusions are as follows (36% of patients who had F1 intially progressed to F3 /Cirrhosis) the final biopsy was taken five years after the initial one.    

[willbb]

" took my first shot last night...and honestly expected to wake up "crazy","

I think all of us  feel that way after our first shot ,glad to hear it wasn"t such a big event .Like the others have said side effects can vary and everyone seems to react differently. Drink plenty of water..that seems to help . Stay positive and carry on with your normal activities as best you can.

Good luck,

WILL

[BMoreThanB4]

Thanks Diane...I appreciate that tidbit of info.  I will certainly keep that in mind.  One shot down and 47 to go.  ;o) I'll make it!

[Diane12855]

I started with my first shot on a Thursday afternoon and didn't feel bad until Saturday when I got fever & body aches... like the flu.

Everybody reacts different to the tx, but everybody reacts pretty much the same to end stage liver disease... and it isn't pretty, so I think that if there is any way possible you should do tx. Get all the help you can to make it. Don't wait because stage 4 may just be a few years away.

Diane

[BMoreThanB4]

Thanks...that was most helpful.  I intend to work the entire time as well and am indeed determined to beat it!

[nygirl7]

I never had those 'flu like symptoms' that people get on shot night until about week 30 and then it was just randomly. However I did develop drastic anemia at week 2/3 (my fault I was taking way too much ribavirin on my own), then at week 20 or my thyroid went and then of course there are the rashes which I had pretty much all of the time.

However, not everybody gets hit this hard (again, my fault I had geno1A and 1B and thought errantly I needed to take more meds than normal).

Mostly after a while the lethargy will set in that is the most common side of them all but again not everyone gets it.

In a way though it is good to see some sides, even though you hate them, because it does show that the meds are working and you have enough riba to give you a good high serum level - but generally these things you can see by your 4, 12, 24 week PCRs anyways.

Welcome to the group.  I am a single mom and I worked all 72 weeks of treatment - it wasn't easy at all but it is possible if you really want to beat this thing!

Good luck.