Side Effects

[Shell1229]

Hi guys:
Well...after lots of soul searching I finally decided to try to "beat this beast" and took tx#3 on Friday.  I take the shot at work at noon figuring that by the time work is over If I am going to feel crummy I will have th week-end.  Tx#1 was a little tough chills, fever, sweating but nothing unbearable - Lasted about 10 hours.  So, I expected the same thing with the next tx - Lo and behold.....nothing - This tx#3 I took on Friday, again no sides just a little tired - Can I be doing the injection wrong? Or should I just be greatful that my body is cutting me a break? - I am taking the Pegasus alot with the 5 pills of Ribavirin. - Just went for labs (CBC) on Thursday - Any comments on your experiences would be helpful. I pray for us all...

[psychdoc]

I thought I was doing the injection wrong for a few weeks. I only had fatique for about a month. Then as the ribavirin built up in my system I had different sides. What I have discovered is that each day is different and it is difficult to anticipate what the sides will be. Just when I think I can't stand it another day, then I feel better. Are you taking the 5 pills of ribavirin all at once? It is my understanding that the ribavirin should be evenly divided between 2 doses and spaced about 12 hours apart in order to keep the level even in our system. I don't think it matters if you take a dose of ribavirin at the same time as the Pegasys. I am on week 43 of 48
God bless,
Barb

[scruffy]

My first shot was the toughest and I also was surprised the next two were mild. I'm on 16 of 48 and it's gotten easier for me.That is, I have less fatigue and my thinking has cleared slightly.I would'nt even try to speculate on future sides though.
Good Luck!

[OkieJim]

Enjoy the good days. I'm so happy for you. I just did #5 Friday night. Still the same. Nothing to write home about it is still bearable. I have had two cry spells this last week. Only lasted one minute each time, just teary eyed. Don't know where that came from that was new. God Bless You

#5 is alive. I hope you all are OK today. just think we are now through the first month already. YaHooo

[Shell1229]

Thanks for the feedback - Yes, I was instructed to take the 5 pills of ribavirin all at once, was that wrong? - Well, I will just be grateful that the last 2 tx didn't create too much havoc aside from lack of energy and motivation.  Having others respond with their experiences certainly helps. Being as I live alone it gets a bit scary but "I Am Woman"  -----

[odessit]

Hey,
As far as I can tell, you should be taking Riba twice daily, probably 3 in the morning, 2 in the evening. My 2 cents...

[Shell1229]

Thanks again for the feedback - anyone else taking their Ribavirin 2x/day? - My instructions were 5 pills/day - Just at the same time each day.....

[AK - Hepper]

GI-PA Erin said they tell you to split up the riba to lessen the sides. I was also told to take mine twice a day, with food.

[britgirl]

I agree, twice a day, with food, about 12 hours apart if possible, same time every day. I used to take mine about 7am and 7pm, and the injections at 9 in the morning. I never had any side effects from the Pegasys injections either.

[cindee]

good for you girl....you made the right choice to beat the nasty ole dragon....i have 4 shots to go, and it's been hard on me. i am on the same meds as you, but take 2 capsules in the a.m. @ 3 at nite. i take my shot about 3pm on fridays. you hang in there and pray you will be a responder!!!!i am so thankful for that. much love and prayers to all.

[dee40]

hello, this is all new to me, Im going to get my first liver biospy this wednesday. Ive known Ive had hepc for about 6years. Im worried about my results and what is yet to come.

[all2humble]

Hi all!  I pray you are all doing fine and your team is winning.  We as a team hopefully slay this beast.  Life is too short for a hickup like this.  Just wanted to say, I too believe the CoPegasys is supposed to be split in two equal amts per day.  With 5, I would split one in half and take 2 1/2 in the morn and the same at night.  Took shot #5 Friday night.  No serious side issues I can't handle.  I've been pleasantly surprised.  I hope and pray you all find the courage to "ride the storm out".  Once again, want to say that this forum is great!  Have an idea.........at 6pm Central, lets all do the wave together.  Lets go left to right.  I'll lead!  :-)  
~Peace, Health & Happiness!~

[dee40]

Hello, this is all new to me, Im having my first biospy this wednesday. Ive known I had hepc for about 6years. Im worried about my results and what is yet to come
.

[jonihs]

Welcome to the forum. You have come to the right place, as there is a lot of experience and knowledge here. If you are worried about the biopsy, mine was a piece of cake. The only thing is I would insist on an ultra-sound guided one. Please let us know your results, and feel free to ask questions and address concerns here.   Good Luck, Joni

[dee40]

hey joni, thanks for your reply; I did have an ultra sound last week and  my liver was slightly enlarged and so was my spleen, so I dont know much more until I go, when you had your biospy, did you have to stay overnight or was it an out patient? dee40.

[jonihs]

When I had mine it was as an out-patient. I was only in recovery for a couple hours after, while they kept track of my blood pressure. I did have pain in my shoulder afterwards but they treated that and I went to Fudruckers and had the best cheeseburger ever. lol. For an ultra sound guided biopsy they use ultra sound to show them where to go. I think most procedures are done this way now, but I'd be sure. Joni

[layla]

I didn't have any sides for almost my first 2 months. I'm on my 8th month of pegasyst and my sides are most often mild. Like it was mentioned it seems like just when they act up and I wonder how I will take it the get better.
D40- Welcome to the forum. Hope the biopsy goes well. Make sure to bring a book. It was boring laying there for hours. Personally I would have my biopsy done by a radiologist and ultrasound guided. I had a bad experience but when it was done right it was a breeze.  LL

[doll face]

I was told to take the pills twice a day. 2 in the morning and 3 at night.As I think back, my doctor and the paper work I got both say not to take all at once and to not double up if I miss a dose. I would definatly check with your doctor on this.I am just about to do shot 15.( Do mine on Sunday night) Thank your lucky stars for easy sides. Mine are starting to get a little worse it seems as time goes on (might just be my imagination)I am still grateful though, it is still easier this time than the first time on tx. I was on pegintron then and it kicked my butt.Best of luck to you and everyone. Kim

[dee40]

hello I was wondering if anyone has had any hairloss or weightloss?

[Sioux]

I lost about 1/3 of my already thin hair, I started using Nioxin Hair products, and after about 4 weeks I had little sprouts comming back in. YAHOO !! I also have lost about 30 lbs. Which is good for me, I was about 50+ lbs over weight. I'm on week 28.

[moonbaby]

I am glad you decided to treat. I am coming up on shot #6 Wed. I decided to do the injection mid-week so maybe I will be close to some degree of normalcy by the weekend when the kids are home. School, football, and cheerleading keep them busy the last half of the week while I am feeling so crummy. I had sx similar to yours with the 1st shot. Seemed like sx were easing up a little until last Wed.(5th shot). A few hours after the injection I started looking for my gun and shells, which my husband promptly hid (which really ticked me off). I am still trying to explain to him and the docs that I was merely thinking of protecting myself and kids. This tx leaves you feeling so vulnerable and this is not an emotion that I am accustomed to. The doc made me take this stupid test with questions like....1) Do you think you are as good as or better than most people? 2) Do you go out in public?.....yadiyadiya...hell no I don't like to leave the house, much less go out in public for these small-minded idiots with their small town games to gawk at.
Had to choose from answers like never, some of the time, all of the time. The nurse flipped smooth out, said they didn't like anyone to score over 18 (out of 60) and I scored 40. They wanted to put me on AD ASAP, even gave me some samples so I could start right then. I just agreed, came home and the samples are still sitting on my dresser. I just feel like this whole disease process and tx is a mind f***. I read somewhere on this forum that sometimes the sides decrease after shot #6? So, I am going to try it without the AD's. Besides, I can't think of a question on that test that I wouldn't have answered differently before I started tx! Sorry for the long post. Thanks for allowing me a place to vent.

Love and Light,
Moonbaby

[chicagogirl]

I take 3 riba pills in the morning and 2 at dinner.  Definately split up the dose.  Also, do not take riba before going to bed - they can cause insomnia.

[AK - Hepper]

I have to take that test too, every time I go for labs.

[susan400]

I take my riba at 8:30 in the morning(3) and then, the 2nd dose at 4:15 in the afternoon.  I don't like taking them too late because it messes up my sleep.

As far as weight loss and hair loss goes, I've lost 20 lbs. and had some hair loss at about the 5 mon. point, but it's slowed down considerably. The biggest hair loss only lastest for like 6 weeks.  

By the way, I'm not on Pegasys, it did not work for me.  I'm on Peg-Intron plus daily regular Intron-A.

Susan400

[ral]

The same thing happened to me, only my wife called the Dr and had him try to give me the test he started asking me these stupid questions ,was I mad, was I sad etc. I asked him how would he feel if all of a sudden your life stopped after straighting everything out 35 years ago becoming a productive part of society and then your life just has to stop? Then I told him when I'm ready to take AD's I'll take them. Then I told my Dr and wife to never do that to me again. It was a suprise meeting I did not know what it was about, they agreed.

Well the long and short of it they were right I started  taking AD's last week I needed them(12 wks) they seem to be helping. The sx's can be tuff. like people on this forum say do what you have to do to stay on tx.

God Bless
Bob