Riba Reduction?

[wyntre9]

D@Mn!!!  I was doing so good for a couple of weeks!  Now HgB dropped again to 10.3 and I feel very weak.  With only 7  more injections to reach 72 could i reduce the riba from 1000 to 800?  Would that help the anemia?  Could it affect SVR?  Is procrit a waste since I've only got a month and a half left?
Anyone know how quickly procrit takes effect?

All suggestions, opinions and perspectives welcome.  :-)

wyntre

[Forseegood]

just wishing you the best of luck whatever you decide to do, youre a trooper and an inspiration to me....

[wyntre9]

Thanks everyone for the advice.
The procrit is a problem as I'm literally too weak to drive 200 miles RT to NJ and see my gastro who is the one that would prescribe it.  I'm thinking i might try to do a telephone consult.  I had blood drawn last week for other issues and that's how i saw the 10.3.  Also, the insurance company isn't exactly gonna rush to put a procrit order through and a month could pass before it's approved and by that time I'll be down to 3 injections.  i don't know how much it costs (anyone know) but I'm sure it's expensive and beyond my means right now.
Cocksparrow has a good point that the berg study was with patients on 800 mg Riba and since the half life is so long it will probably have little effect.  I'm concerned because i had a minor accident the other day when i had to drive to Albany and back and I know that's related to the dizziness and faintness.
Grandma, it's not that I'm against procrit - it's that i don't know if I could get it in time for it to do any good.  Anyone know how long it takes to start working?

Also, i know many other posters have had hgB below 9 and somehow manged to pull through.  In my research yesterday it looks like procrit and transfusions aren't an option until hgB is between 7 and 9.  Going by my last 3 labs, it looks like hgb is dropping about >5 per month so with 2 months left that should still bring me to 9.

But it's weird how you can feel the difference in a .5 drop.  i made my PCP order a CBC last week coz i wanted to check hgb and sure enough, it was lower and i'm officially diagnosed as anemic.

Zazza,
I KNEW i shouldn't have posted how WELL i was doing last week!  *LOL*   It is strange the way sx have a habit of biting you in the a$$ just when you think it's over!
the good news is the wellbutrin has calmed me down to the point that at least I'm not completely stressed.  my main concern is functioning for the next 7 weeks and being able to drive short distances to stock up on food and stuff.

thanks everyone for chiming in!  i haven't been posting much partly coz I'm so sick of being sick and I didn't want to be reminded of it.  16 months is a looooooong time o be on these meds!

wyntre

[GrandmaA]

I don't think the Procrit is so bad. It helped me a lot. NYgirl said she even took it for awhile after tx stopped. I don't know why you are against taking it. I took 12 vials of it. One was after tx.

[Bobby1952]

    Its a tough decision. I read a study on clinicaloptions.com not too long ago that said it had better results at SVR when the Riba was dropped by 200 a shot instead of the usual 400 to combat anemia. Don't forget that at this point in tx the Riba is really built up in your system with its half life and all.  
    This being said I understand that at this point in tx you don't want to mess with the meds. Can you stick it out for a little while longer. If your insurance will pay for the Procrit I would ask the DR. to order it.

Bobby

[zazza]

It is kind of unexpected, is it not, to have to make these new decisions on the last stretch of tx. I, at least, figured it was just a straight walk the rest of the way, then wham, the thyroid issue. I am still tx'ing by the way.

I agree with working dog. I was amazed that you were out walking. I never leave the house unless forced to. My hemo has been around 10 almost all during tx, and I tell you I don't get much done. I enjoy sleeping and resting. When my hgb first hit 10 I was bed struck for 3 months, but my body did get used to it. Question is if there is time enough left for you to get used to it.

I think you have to make a personal decision. Just like I had to with my remaining 3 weeks. On the one hand, we have gone so far, so much further than most, maybe it does not matter to dose reduce or cut a couple of weeks short. On the other hand, how important is it to me personally to feel I have done everything I personally could? How do I feel this last month on tx, am I holding up, or am I totally worn out? Like Jim says, we do need the patient to survive tx, otherwise it is no good killing the virus.

I would want to know your "mg riba per kilo". If you want to, post your weight and dose here, or send me a personal message, and I will help you calculate it.

You know I totally admire you. You have had so much more sx than me all through tx. You are Wonder Woman to have come this far. I pray it will pay off for you.

Any decision you make I will back you up and stand there right next to you. Can you believe we are finally reaching the end of tx?

Zazza

[cruelworld]

i was at and below hemo 10 for many months and ended at 9.4. this is part of why i quit full dose at week 59.  if you really want to really stick it out, try it. you do get used to it.
you can make it if you want. the procrit is a little late i think but maybe not a bad idea just in case your hemo takes another big drop right now. i gambled sort of and decided to make it as far as i could without procrit. my hemo drop in the last 5 months was steady but
fairly slow to go down. maybe .5 down or less every two months.
i dont think you will lose much, if anything, by dropping to 800 a day. dont destroy yourself getting to the finish line. most of the dirty work is all done.
YYEEEE HAAAAW.

[desrt]

I agree that dose reduction at this point shouldn't impact your chances of  SVR, but why not also order the epo? You don't want to take a chance on having to totally discontinue before you're ready to.

[CockSparrow]

Ther Berg study used 800 riba for all 72 weeks. Cutting back shouldnt impact your SVR odds especially this late in procedings.

CS

[wyntre9]

Jool, By the time I get the procrit , which would be about a week, and counting 2 weeks for it to work, I'm down to one more month.  I know procrit helps a lot of people but it's so late into the TX.

I was thinking og cutting riba to 800.  I've been UND since week 17 for a totla of 49 weeks.  I know Cruel World and a couple of other posters have tapered off meds gradually as they get to the 72 week mark as a way to rev up your immune system instead of going cold turkey.

Thanks for your advice.

Working Dog,  Maybe you're right and I'm trying to do too much again, overestimating my energy levels.   But HgB has been dropping steadily .5 per month for the past 4 months.  it's weird coz I thought most of the HgB decreases usually occurred in the first couple of months.

[working dog]

maybe some of the weak feeling is from being worn out...from all that walking and stuff you started up when you were feeling better..sounded like you were going for it at the track...your so close now to finish.....good luck...billy

[jools57]

ughhh! I'm sorry you are experiencing the drop in hgb. I know how that feels. Mine dropped to 9.3 before I got started on procrit. It took me 2 weeks before I started to feel better, and my numbers climbed. My Dr. was very against me lowering my riba dose. I'm on 1200. Since you have a month and a half left you might think about starting procrit. I'm glad I sucked up the cost, and did it. I think I would've quit tx without the procrit! You've come so far!!!

Wishing you all the best,
J