1 Extra riba lowering HGB

[painterlady13]

Hi all, I am a 1b, 27/48 UND since week 6 and on rescue drugs since week 5, and I remember what 8.2 HGB felt like.  162 lbs.  I have gained 20 pounds since starting July 28th last year. I started at 1200 riba and dropped to 600 when HGB dropped. Been working my way back up to weight based level. 4 weeks ago my doc added another Riba to get me back to 1000 mg after a few months of good HGB on 800mg. I am glad  because of the extra chance of SVR, but in the last 4 weeks I have had a starting HGB of 12.9,  2 weeks ago it was 11.9 and now 10.9 today.  I am hoping it levels off fairly soon as I am still ok a little more tired but do-able.  And I  really want to try to stay at this dosage.  I just don't want to find out that I go thru all this and then find they should have had me at the higher dose all along. Haven't heard from doc yet since Jan 12. so I guess it is ok but I am kinda concerned about the dropping this much so quick. I kinda was supposed to be doing labs once a month now and since he upped the riba I went in on my own and will do so again in 2 weeks just to keep an eye on it. I just feel better doing it.
Question I guess is: Has anyone at my weight successfully achieved and remained SVR at 800mg? Or do we even know?

[jmjm530]

How much Procrit are you taking? If you're on the standard 40,000 units/wk, discuss with your doctor about upping the dose to 60,000 units. I did this by injecting once every 5 days instead of every 7 days. As to your question, sure, people have SVR'd with ribavirin reductions and being non-detectible at week 6 is a good sign. You may just be one of those people very sensitive to ribavirin and therefore may not need as much. Still, best not to reduce unless your hemoglobin can't be maintained by the rescue drugs. Also, I seem to remember (maybe confusing you with someone else) that your doc put you on and off the Procrit. If so, going completely off Procrit is often followed by hemglobin going in the gutter. Better to just reduce gradually if hemoglobin gets back up. I started doing Procrit every other week and paid the price. Ended up back on 40,000 units either once a week or once every five days.

All the best,

-- Jim

[GoofyDad]

Second what Jim says,. No way I could have maintained riba dose w/o 60,000 procrit. Like Jim, I did every 5 days. HGB stayed around 9.0 until I dropped one riba pill for about 10 days and HGB perked right up to 10.5 - so I started poppin riba again. And hgb responded as expected.

Also, people used to SVR without RIBA.....

[sfbaygirl]

Not sure how much the riba dose matters at this point, but I think you should take as much as possible. Given your weight gain ( I have too btw) I would think you should be at 1200 and getting the procrit to keep you at this level, although it may be alot. I dont' know alot about it since I was on Aranesp, lasing much longer.

I too agree with Jim and Goof. Since you are so sensitive to Riba, have you thought about adding oxymatrine? Another antiviral that may help....during tx only!

I felt my worse when my hgb was low, so sorry to hear of this, hopefully you are adjusting to the levels of hgb, without a lot of suffering.

[painterlady13]

I have been on a steady dose of 40.000 Procrit since the first time they put me on it every tuesday just like clockwork since week 5.  I will ask the NP about taking it every 5 days instead.  that sounds like it might help since the procrit has kept me at 12.9 since about mid oct. I'll call today and ask what they want me to do.
So far 10.9 is ok I am not standing at work so I am ok. But yes I do feel tihe difference.

[nygirl7]

It is AMAZING how much difference even ONE little riba pill can make isn't it?  It freaked me out completely!

I ended up having to do the same FIVE DAY regimen myself. The doc had tried once a week but my hemo wouldn't go up - then with twice a week it went to high...finally I just listened to the advice in here and did it every five days and it worked like a charm.

It's really what our BODIES need and not a set formula you know? If you have a doc that understands that (so he can write the prescription for the Procrit correctly so you don't run out and have them refuse to refill it early - REMEMBER THAT!) it makes all the difference.

[friole]

Hi Painter.  I too vote for the Procrit every 5 days, and I would up the CBCs to once a week.  Since you have been UND since week 6 (good job) you stand a pretty good chance of SVR but you need all the reassurance you can get.  I took 1200 mg Riba throughout tx and when I dropped below the weight that would indicate that I should do 1000 mg, I weighed in with as much clothes as I could.  I would have put rocks in my pockets to avoid having my riba dose reduced.

You are going into the last half, Painter -- it became pretty grueling for me.  Keep up your strength and try to stay away from sick people and hang in there.  It will all be over soon.
frijole

[painterlady13]

OK I'm shaking right now I just talked to the NP at my specialist's office and was able to talk her in to the 60,000 units of procrit instead of 40,000 and NOT drop the riba... we are going to try this for 2 weeks and get cbc's and see if it helps.  I really pushed for it.  I felt like I was talking the talk of my life still feel that way considering I have gained weight and I was on too low of a dose of riba.  Thank you all for your support I needed that extra push to talk her in to it.

[friole]

Good job.  I want to know if it helps.  It is tough to out vote the doc but sometimes,we just have to do that.  YOu are working now, right?  How is that going with the anemia?
frijole

[painterlady13]

Yes I'm working. It was rough at first but They now have me at a sitting job so it is fine.  Before I had to stand for 2 hours.  My big deal is that I work 2nd shift. I do catch myself taking a nap at about 11 am before work. seems to be working for me.

[compulsive]

Way to go standing up for yourself!!!   It sounds like you've got a good "handle" on the whole thing.  And yeah to everybody for your good advice!!!!