How to Deal with the Side Effects

[SenorD]

May be this is a mute question, but
- how do you deal with the side effects?  
- how do you deal with being a whinny basketcase n putting stress on your love ones for a prolong period?

i just received my drugs this morning.  looking at it, i ask myself: r u ready for this?  it seems as no matter how prepared i am, i am totally freaked out about how long this tx might be.  i keep telling myself, it's just like a marathon run- taking 1m at the time.  knowing it will b hell for a while, last night, i asked my wife if she is ready for it.  of course, she was very supportive, but the reality is that we r talking about 52 wks or more.  Honestly, i feel it might be better if i go thru the tx alone and not having anyone around me.

i am concerned about my wife n my daughter who is too young (8 yrs old) to understand what is wrong with her dad.

please comments.  thanks! srd

btw,
my dosages are:
peg: 180ug or 0.5mL/injection/day
riba: 600mg/pill and 2x/day

i am 135lbs and lean.  is it too much or too little? again thanks!

[Seakestrel]

Hiya, I found this forum about a week a go but have been too "snarly" to post until today.
I'm on week 37 my Tx and I've found that since week 25 my side effects seem to be getting worse:(  The most infuriating ones now (apart from the temper flashes, isolation, brain addling, tiredness and nausea) are a feeling like I've got permanent flu, red tender skin in the "neither regions" and on my arms (with a constant itch!) and collapsing veins - I'm Haemophiliac, so the latter is a very large problem.

Sorry for the rather negative post but I was hoping any of you might have some suggestions on how to keep some of the aforesaid side-effects in check - any help will be gratefully accepted...

Scott

[comeagain]

Most horrible

[comeagain]

Hi this is my second tx, and i think i made some misstakes first time that maybee I´ve learned from. Of course its very individualy, but it seems to me that avoiding stress is a key factor to make it bearable. It seems like every feeling dubbles up about 10 times on tx you can cry when you see the must banal film etc.
Remeber its not only negative if you lay down and dare to meet the must horrible thoughts remember they wont kill you or make you crazy and they will last tops 15 min
if you dare to challenge them and think I´m gonna feel how it feels give me the worst you
got,you will get answers on unanswered question you could have had subconsciously for longn long time.Doing so will make you strong and free. Good luck !

ps make sure you can go away and just be by your self occasionaly

[Wassup]

P.S. I think you meant ...this may be a moot question.. I kinda like 'mute' question though... (Like a silent auction). I'm picturing a guy holding up a sign with only a question mark on it. Sorry, I dream, AND see words, in color. zzzzzzzzz Ant B.............  zzzzzzzzzzzz! another hug 2

[Wassup]

I noticed that noone addressed your question about going through tx alone.  So that your wife and daughter wouldn't have to put up with your sx.  Didn't you say that part of the wedding vows ..in sickness and in health...? Your concerns about your family sound like you really love them.  How would you feel if it were your wife who wanted to spare YOU having to deal with HER illness. I bet you'd be hurt that she wouldn't LET YOU BE THERE FOR HER.  sO, i'M GUESSING THAT SHE WON'T EVEN HEAR ABOUT YOU GOING THROUGH TX WITHOUT HER LOVE AND SUPPORT Sorry, CAPS LOCK) Any mor than you allow her to go off somewhere and not let you give your love and support.  I hear that tx is a real "ball buster", from the lips of the N.P. who dxed me and moved to AZ.  My vote is, Don't even think of denying  your family the opportunity to be there for you. I'd imagine it would be 10 times harder to do flying solo.  I'm talking in my sleep again.  Best of luck, Hugs, Ant B zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz!!!!

[SenorD]

Thanks for all the valuable suggestions and info.  Srd

[oyasin]

yes do take it one day at a time, and here's why. There is a possibility, for various reasons, you'll have to stop meds before you complete tx, as I did at wk 13. All that worry will have been for naught.
also.. my first 8 wks were surprisingly easy, and in some respects, well..... nice.  On day 2 all my years of chronic back and joint pain stopped. Completely. But it returned today, after stopping tx 10 days ago. My "itchy" skin was more like tingling and felt rather nice. Intimacy was greatly improved.
My only problem was mental. If I wasn't careful, I'd find myself staring at or thinking about nothing for way too long. Don't lose sight of it being meds doing it to you, and it is easier.
Once I figured out how this was affecting me, I asked my lovely girlfriend to help keep me in check. She was a great help. The trick for me was to keep busy.
I'll never know what efx I would come to know had I continued tx.
Try not to project thinking into the future. It will upset you and will only accomplish stress, which you need to avoid.

luck to you
David

[zazza]

Pegasys is a one-size-fits-all drug, so 180 mcg once a week is what you should have. (0.5 ml is the amount of fluid in the syringe which gets mixed with the powder.)

Your weight equals 61.5 kg. 13 - 15 mg ribavirin per kg is an often mentioned dose. Taking 2 x 600 mg riba per day would put you on a dose of 19.5 mg per kg, which is a quite high dose. Maybe they have done this because you get pills of 600 mg each? There are pills of 200 mg each. With those it would have been enough for you to take 4 - 5 pills a day, which would mean 800 or 1000 mg.

If you can tolerate 1200 mg riba per day without becoming too anemic, I think it might up your odds for SVR. There is however a risk of having to dose reduce if your hemoglobin falls TOO low because of the ribavirin. I am talking like a hgb below 10 here. There are however rescue drugs like Procrit which many doctors prescribe if you become too anemic.

[wed1942]

Hi!
I have been on treatment for almost 3 weeks now. I'm taking my third shot Sat. PM. I'm doing this alone and no, I don't think you'll be better off alone. I'd love to have someone to just put their arms around me and tell me it's all going to be OK. So just be patient and make sure your wife knows you're going to be on a roller coaster ride with lots of ups and downs. Your daughter will probably be what ends up making this doable for you. I'd do anything for my kids.

So far my symptoms have been minimal. Slight queasy stomach but I just ate a little more if that happened and it seemed to help. I take my pills with a half of a peanut butter and jelly sandwich and it seems to be plenty to keep the nausea away. So far anyway.

Waiting to start the treatment was the hardest thing for me. I wanted to just get going on it as soon as possible. I think now that I've actually given myself two shots it's going to be easier. Only problem is not knowing how I'll react. That's hard when you're alone cause what if you all of a sudden have a bad reaction. Be glad your family is there for you. Good luck.

[medicmommy]

Hello!
I'm doing the same thing...I have my first shot Monday...And, I too have a young daughter...I'm looking at this in 3 month portions...I think the weekly countdown would make me crazy...And I've put my husband and daughter on "alert"...I explained to my daughter that mommy is going to have a "bug war" going on in her body and the medicine  makes soldiers that will kill the bugs...The bugs are very sneaky and it will take a long time for the soldiers to find them all..Sometimes the war will make me
very tired and maybe grumpy too because I may not feel good...If I get too grumpy, she can give me a time out, which I have to make up to her when I'm not so grumpy...
My hubby knows just to tell me I need a nap...LOL...It will be our "code" if I become a witch...Now, if I could just get him to change out the toilet paper roll...:)
By the way, kids are smart, and they really pick up on things a lot faster than we give them credit for..Let you daughter know that it is okay for her to help you...Mine is pretending she's a veterinarian, and I'm a sick kitten she is helping..Best wishes, and may you be blessed with few sides....

[charm27]

Everyone is so different with the sx. I got hit bad at week 7. The first couple of weeks werent bad at all. Its a challenge.
Just try and tell yourself its the best thing you can do for yourself.
You might breeze thru it there are people that do.
If not it will be up and down, so enjoy the good days, and try not to be so hard on yourself. It only makes things alot worse.

Charm

[SenorD]

you r correct, thanks!  I havent started the tx, and i almost overdosed myself.  my peg dosage is 180ug/injection/wk. srd

[billstrong1969]

Are you sure that your shot is everyday and not once a week?  My Ribavirin dose is the same but my doctor told me that the side effects come primarily from the Interferon and not so much the Ribavirin.  Grant you the Ribavirin can cause your blood levels to drop over time but most will plateau with that.  I'm in week 4 and my shot is every Monday and the first 2 weeks were a bit rough, but it has gotten better.  Right now it's the nausea that I'm trying to cure.  

billstrong1969