2 days @ 1,000 1 day @800

[booocooo]

Hello Everyone -

It's been a while since my last post - but just trying to make it through each day!  I'm in week 9 of my 24wk Tx and just a quick overview:  I started Tx at 111 pounds and am already down to 105 - I'm 5'4" tall.  In the last month I was hopsitalized and then put on Procrit.  I'm now in the down cycle, waiting for my hemo to drop low enough to qualify for Procrit again (what a ride this is)...I think my hemo is at 10.9

My question is to any who have had experience dose reducing?  I'm geno 3a and did go UND at week 4 - Yay!  However, my doctor has me on this schedule of two days at 1,000 Riba and one day at 800 Riba.  He did this b/c my anemia and if I went three days on 1,000 by the third day I couldn't even stand up (nausea so bad/heart racing etc...).  I'm just curious on your thoughts about this increasing my chance of relapse?  I was reading another post where they were talking about weight-based Riba and I'm wondering if being at 800 of and on is okay because I'm so small?  I feel like this medicine is kicking my butt, so it must be working right :)

Thanks for any input.  I guess I don't really have an alternative unless I want to be in bed for the next four months...

Booo :)

[booocooo]

Thank you for your post!  I agree - this is torture.  I just had to cancel dinner plans my husband made as a surprise for me b/c I feel so crappy.  I had a Procrit shot on Thursday, so hopefully it kicks in.  My glands in my throat is really swollen and it hurts to swallow (has been off and on for about a month) and they can't figure that one out either?  I have lowered myself to 800 over the last 4 days b/c I feel like I can't even function.  I know that 1,000 HAS TO BE too much for me....I'm down to 104 today (5'4"tall).  GROSS!

Hopefully I'm at the perfect consistency even though I've been up and down.  It's out of my hands at this point. :)

Thanks!
Booo

[nygirl7]

See boocoo the thing that makes no sense is that the riba builds up a serum level in your blood - so technically it's not like it is different one day than another. You reach this level and are supposed to STAY at that perfect level constantly so it can keep the virus from doing its nasty replication.

So why in the world would they have you go up and dowdn and up and down? Makes no sense.

And why aren't they just keeping you on the procrit knowing that your numbers will drop after it's effects wear off?  It can take up to 6 weeks for it to work - the idea is to find a good medium where it's not too high or too low and keep the hemo number there so you can function.  It's really mystifying me why they are making you go through this torture (and God knows once you get down around 9 that literally is what it seems like!!!!)

[Texas714]

As far as your weight loss goes...I'm a few weeks ahead of you and I've noticed that my weight loss has slowed way down as of late...in fact for about the last 3 weeks I've been holding my own...I'm will take shot 16 tonight.

[booocooo]

Thank you for that formula.  I would really like to do it opposite, 2 days at 800 and 1 day at 1000.  I would hate not to listen to my doctor and then relapse in 6 months though.  However, I do feel like I'm wasting away here.  All my muscle is gone and I feel like a thin, wobbly, jello-jiggler :)  

Oh, only 14 more shots to go..... I can do this, I can do this, I can do this!!!!  I will just keep repeating that :)

Thanks!

[zazza]

With 800 mg ribavirin and a weight of 105 lbs, you have a dose of 16.76 mg per kilo. 13 - 15 mg ribavirin per kilo is considered a good dose, so for sure you need not worry about taking 800 mg with your weight.

Good luck!

[CMcH]

At 4 weeks I was at 11.3 and my NP said she starts Procrit at 11 and she would see me in 2 weeks, no results on VL yet! I have read here that it can take 2-3 weeks to take effect  so I'm pretty sure if things keep going this way in 2 weeks I will feel like I needed it 2 weeks ago? I like NYGIRL7 idea of being pro(crit)active. Sorry, I know that was bad.
I will have to ask my NP about that. That is what is so great about this forum getting other opinions.

[booocooo]

Thanks for the posts.....I don't understand the logic of the rollercoaster either!  In fact, my nurse just said that weight-based Riba for me is 800, but they still want to keep me "up" as much as possible.  Oh well!

I got back on Procrit today, for second round of three shots.  The first round of three only lasted for a week until I fell back down in the 10s....oh the joy of Tx :)

[nygirl7]

I was 5'7 and 125 pounds. When I got down to about 110/115 needless to say I looked like a big giant skeleton. My hemo dropped from 15+ to 9 in just over ten days. I kept fainting dead away - heart racing - head pounding - ears ringing the regular deal.

The doc did NOT dose reduce me and I was on EXTRA riba for my weight (I asked and then I took even one more on top minimum because I was stupid).

I took epogen from week 3 - 72 the entire time.  That makes much more sense than having an up cycle and down cycle up cycle down cycle type of thing going on in your body.

When my hemo would get too high (from the two shots a week) I would drop back to every five days instead.

I can't understand the logic of making you suffer over and over needlessly when you could just take less procrit or space it out longer until you are comfortable. Needless to say 10.9 is not high it's not even normal. what's up with that doctor, I don't get it at all?

[dorsey15]

I'm geno 1 a--weigh 130 5'4 started @ 1000 day and @ wk 3 hemo dropped to 9 so my hemo dropped my riba to 800 mg (weight based) .. I cleared @ 4wks...YEAH!
I'm on wk 23 now... have still had occasional anemia... 1 or 2 procrit shots in between...
always low on WBC..  take NEUPOGEN shots since week 3... now every other week...
at 12 weeks I was still UND...
Treatment has been rough for me...lots of sides...losing my hair..NAUSEA still ..take Zolfran every day.. FATIGUE... is the worse..
I certainly don't think it's a bad idea to go with WEIGHT BASED Riba...it seems to be working for me..
Best of luck on your journey...
Dorsey