Updates... and lots of questions!

[NewandConfused]

Okay I know you all have not heard from me in a while, but things just kind of got crazy around here!  Quick synopsis -my hubby is the one diagnosed with Hep C - I am only the coward with the typing fingers.  He has no computer experience and no desire to learn it, so I have no choice but to play the active role here.  You have all been so helpful since we started this journey and I thank you so much!  I thought I'd share a little bit about our progress and then get all of your input yet once again.

As I said things have been an absolute whirlwind around here!  Since being diagnosed and deciding to go forward with treatment he had to have his gallbladder removed and an umbilical hernia repair the first week of July.  So we put off starting any treatment.  We are now 4 weeks post surgery and are looking at the first injection the end of next week.  Does this sound right to you all?  

Next big question is should we be predosing on the Riba?  If so, what if we start that this Saturday?  I'd like to start during the weekend so we get some kind of feel on how its going to affect him.  But I'd love to hear anything any of you have to say about the pros and cons of starting the Riba early.

And can you give me some suggestions on what to be taking with the Riba?  He is a construction worker so will be taking it about 5:00am and again at 5:00pm.  Does this sound okay or am I cutting it too close to bedtime at 9:00pm?  

After applying for aid as many of you suggested, we were accepted which is amazing to us.  We have great insurance but our copay was going to be about $600.00 a month.  Hubby has had three major surgeries since November and financially this has been a bad year for us.  Otherwise we would not of even considered applying - but I am so grateful we did and it has taken a huge load off of our minds.

That brings us to the fact that our first shipment of meds arrived today - I wanted him to stay one injection ahead and that is why we chose delivery this week - again following advise I have read on these boards.

I won't lie, we have a long way to go in this battle.  I have not been able to get past my fear of being tested or of having needles in the house.  Hubby is nervous and although in a way eager to start treatment in order to hopefully put this behind him - is worried about the future 6 months.  This has been a horrific long year already and it seems as hard as we tried to get past everything - this came along as the "icing" on the cake - the hardest thing yet to get over.  We are kind of losing site of the light at the end of the tunnel.  I know not the best way to start - but is there ever a good time?

I can't thank you all enough for everything you have already done.  I may not post a lot but I am always here reading, trying to absorb, trying to understand.  Without all of the information you have provideed I amnot so sure we would of even thought about proceeding with treatment.

[Trinity4]

I received my meds on a Friday afternoon.  The nurse told me to start tx the following Friday - I was finishing up phlebotomy treatment and they wanted me to wait a week to allow my HGB to build back up.  They did not mention pre-dosing the riba and because I was rather naive about treatment back then I thought I should probably start taking my pills right away.  Took 1000 mg riba daily one week prior to starting injections.  Don't mean to be a buzz kill here but I was not UND by 12 wks.  So in my case, it didn't make a bit of difference.  You really should discuss it with the doc if you feel it will be benefical.
Trin

[CoWriter]

"BUT the nurse adivsed predosing by a week"

Nurses are not allowed to prescribe.

If your husband has a problem while predosing on the advice of a nurse, the doctor is not responsible for taking care of it since you didn't follow his instructions....and the nurse may get in trouble for prescribing without having a medical license.

If you feel strongly about predosing, discuss it with the doctor.

[Fl_Gator]

I wish you luck with tx...you have gotten some great advice so far...and everyone is different so I will tell you about my experience since starting tx.

My sx have been minimal so far (I am about to start week 9) I have been taking the shot on Friday afternoons and not having much problems with them until Sunday and Monday...then I am usually exhausted and want to stay in bed all day. Tuesday it gets better.

Last week I took my shot in the morning (only because I want to change the shot day to Wedensday so I am backing it up by 12 hours each week till I get to where I want to be). Then I ate rich foods for the rest of the day only because I read here that it would help diminsh the sx...and it seemed to work. I had a much better weekend. I also had a dose reduction on the Riba a couple of weeks ago due to anemia...don't know which one made the biggest difference.

I guess the point I am trying to make is to mix it up a bit and see what works best for him...don't hesitate to ask questions here.

God Bless

[Xenigma]

"BUT the nurse adivsed predosing by a week"

If  I had to do it over I would have pre-dosed a week of Riba instead of taking it for a week after my last shot.  Either way you are getting either the 24 or 48 weeks of Riba and since it lasts up to a few months after your last injection, I wish I would have pre-dosed.

Since your nurse mentioned it I would go with the pre-dose but that's just my opinion.

I also started tx 4 weeks after cardiac surgery, my bloodwork was stable and the numbers were good so we started tx.  I just finished the 48 weeks with no major problems.

Good luck...
enigma

[nygirl7]

N&C

You are so far ahead of most people it's crazy but you are doing all of the right things certainly as I can tell!  When I started treatment back in 2005 - nobody had ever heard of pre-dosing riba. Most doctors don't practice this and it's really only in places like this where we are kind of obsessive that you'll hear about it. Pro's and Con's to both sides of the argument - truthfully I don't think it matters all that much.

The riba when you first take it has no real effect on you that i was able to tell - it's not until you start to build up a good serum level that you start having problems from it (ie: insomnia - hemolytic anemia).  5am/5pm soon won't really matter because at all times you'll have built up a level inside his body so it doesn't matter if you take it at midnight really (well I wouldn't try that but you understand).  I took it at 7am/7pm so I could take it with meals and never forget it and also get the highest fat concentrations of the day. and also if you take it with food it really cuts down the nauseau.  Some days though I just couldn't eat and would take it with a yogurt smoothie - just something for the molecules to bind so so that it doesn't get peed out!

Other than that you sound like a wonderful wife who's doing everything perfectly correct. It is TOTALLY best to stockpile a bit and always make sure you have that extra shot on hand. You'd be shocked at the different reasons that people have gotten screwed up.

I took the shot at night because I found about 4 hours later (seems to be common) was when it would start to wipe me out. Hve him take two tylenol to try and offset any fever side that might come and if you have it an Ambien won't hurt. Trying to sleep through the most of it is the best.

I had NO sides with the first shots at all - no fevers nothing. Of course I made up for it later with every other side as bad as you could get it but it goes to show.....drinking all the water, taking the fat and the tylenol can help.

I'm a BIG baby and i made it through 72 weeks - it's not easy but he'll be just FINE.

Good luck.

[FlGuy]

Generally speaking, it's good to take meds with the doc's direction and understanding.  I pre-dosed riba for a full week before first Peg and it seemed to work with me in a quick viral response.  But people and progress with tx varies.  It's a good idea to 'stockpile' the meds in case there are any refill speed bumps along the way. I always had a 2-week buffer which was achieved by waiting to start.  As for your hubby's condition to start given other medical stuff, the doc's answer should be the guide.  5 AM/PM seems like good timing for the riba, taken with a meal greater than a glazed donut.

[NewandConfused]

I wish it were that easy!  The dr. advised taking the riba same day as first injection... BUT the nurse adivsed predosing by a week.  We seem to have a better relationship with the nurse than the dr. and it seems like most of our treatment will actually go through her.  And she definitely has a better personality and has been much more forthcoming as far as information and getting questions answered and helping us to acquire meds.  So I am, just a little confused.

[Texas714]

Since your husband has never treated before...I'd say to follow your doctors orders as far as how to take your meds.  I'd say to take the shot on Fri. evening.  You will both be surprised how fast the 6 months passes.  I can't believe it's been right at 6 months for me.  Good Luck to ya'll.