Stopping riba

[spunky13]

Well, I took your advice and called the dr. and he ordered IMMEDIATE blood work which revealed a hemo of "9".   He is sending over procrit but taking me off of the riba.  He said he will put me back on once my hemo comes back up.  I'm not too happy about this cause I thought I would have done better this time around.  I knew once the breathlessness started, I was having hemo problems.  ****!  I hope this doesnt turn out to be a "start-n-stop" ordeal for the next 5 mos.  Once the hemo goes back up, will I always be taking the procrit or will the hemo drop every time I go back on the riba?  How does this stuff work?  I'm upset, confused and disgusted.  I'm soooo afraid he will stop tx altogether.  Any feedback, as usual, is appreciated.

[ladybuglola]

Wow sorry your feeling so bad.  My hmgbns were at 9.5, I was taking 1000mg riba.  Doc lowered riba to 800 and had me take procrit once.  A month later i tanked down to 8.6 which at that point I insisted procrit weekly or bi-wkly which he agreed to bi-wkly which now my hgb was at 10.5.  I feel better and he still has me on bi-wkly.  I'm surprised your doc stopped riba. It does take a wk or 2 for procrit to work like everyone has mentioned.
I was very firm that I didnt want to lower riba again or stop treatment just because hbg was low, I told him i could live with taking procrit the rest of my treatment as long as it gave me a decent quality of life.  So far so good.  
Good luck, I'll be praying for you.
lbl

[jmjm530]

ommited the"if" here"
"Don't remember the specifics, but IF you have...
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Main point, and what others are saying -- is to avoid stopping riba if at all possible

[jmjm530]

Don't remember the specifics, but you have signifcant liver damage and this is your second time around -- then I would fight this thing as agressively as reasonably possible. And depending on what week you're on, stopping the riba would would not be in my plan. Have you spoken to your doc about a transfusion until the Procrit (epo) kicks in. That would be be my suggestion. If you can't work with your doc, consider getting another opinion from a liver specialist (hepatologist). Going off riba for what be a week or two -- es early in treatment could ruin your chances of SVR.

[IAmTheWalrus]

Sometimes Procrit takes a while to work. I noticed a difference in about one week. Some take longer and some do not respond well to Procrit (HGB stays low).  When my HGB came back up, the doctor took me off it and is waiting to see if it tanks again. If it does, he says I'll be on a regular (but lower) dose of it perhaps.

Good luck!

[portann]

Wow. Everything happened so fast, given you just posted yesterday, saying you were feeling breathless. The great thing is you acted quickly (on NYgirl's advice, I think) and know you're at 9.

I feel upset, too, because I've read in the forum how important a role ribavirin plays, especially at the beginning of treatment. Can you ask the doctor if you can at least reduce it and not temporarily stop it entirely? My nurse gave me procrit to keep in the fridge if I went below 10 but I never had the impression she planned to take me off the ribavirin if I had to go on the procrit.

Anyway, I don't know much about this but I'm sure people with first-hand experience will comment and help you through this. Congratulations again on acting so quickly and effectively.

[can-do-man]

My hepo put me on procrit when my hgb dropped to just over 9 with no dose reduction in riba. It took a while to rise but stayed at just over 10 thoughout tx. I stayed on 40,000 thoughout tx. If hes set on stoping the riba maybe you could get him to reduce the dose your now taking instead of just stoping it altogether. Best to you

cando

[nygirl7]

Agree don't know why he's stopping the riba - it almost makes no sense at all to me to risk failure of treatment before trying to fix it with the procrit (which works very handily for most of us no matter how bad our drop is).

Good luck - I am not sure why he's doing this but...I wish you all the best in the world.

[dorsey15]

I know a lot of people are going to jump in on this one....If I recall--this is your 2nd time around and you had RBC issues before .. aren't you on 800 mg?? because you are so low on your body weight now???
However, w/ RBC @ 9 and he's ordering procrit.. I'm wondering why he is stopping Riba altogether??????? Sounds drastic.  Is this the same doctor that treated you before??
Is he a Hep doc??
Would think to put you on @ least 40,000 units of procrit 2x or 3x a week for that matter and keep you on riba then to quit the riba altogher ???

Just my thoughts.. you are going to get many more from members...
Best wishes today ...stay strong..
Dorsey