Help Ribavirin reduction!! Oh no!

[B-bunch]

I'm on week 9 and my hemoglobin is down to 8.
My hepatologist wants to lower the Ribavirin down to 600mg from 1200mg.

I've heard negative reports here about doing just that. I'm trying for 72 weeks.

Does anyone have any stories about doing this kind of reduction?
Negative or Positive??

(for women...does finishing your period right before your blood test make
any difference to your hemoglobin level?)

I wil call my doc on Monday. I don't want to dose reduce if it will affect getting
SVR.

Now I'm very concerned.
Please add any stories that might have anything to do with dose reduction of Riba.

Thank you so much everybody.
Sharon

[jmjm530]

B-Bunch has been on 40,000 units/week of Procrit (epo) from the beginning. Right now, given her hgb level,  she's perilously close to having to stop treatment. As mentioned earlier, I think she only has two main choices -- either drop ribavirin now or have a transfusion. Meanwhile, she's upping the Procrit to 60,000 units/wk, but as you know that will take some time to kick in, assuming the xtra epo makes a difference.

-- Jim

[nygirl7]

Merrybe just posted an EXCELLENT bunch of questions for a doctor.

Under no circumstances should your riba really be lowered - no dose reductions is the BEST chance of reaching SVR.  I would calmly and nicely ask the doctor why you can't have epogen - yes it's expensive but this is exactly WHAT IT IS FOR!  

I was very lucky I stopped having my cycle completely when I went into treatment - the doctor and nurse DID imply to me that it was a lucky thing when my hemo dropped down so drastically so I imagine it MUST have to do with your hemo levels a bit.

I just can't understand why a doctor is not willing to do everything in his power to keep you on full dose at all costs...it just makes no sense if you are willing to take the Epo and the insurance company is willing to pay what does he have the RIGHT to care about?

Please speak to the doctor again before you drop any meds.

[jmjm530]

Well, all the best luck. Hopefully, the dramatic drop in hemoglobin correlates with a high serum ribavirin level which is a good thing. Curious if you discussed the transfusion with your doctor and their comments. Not sure if the course was the same, but you do mention that you had to stop tx drugs at week 24 because of low hgb. If so, you may at least want the transfusion option (if not now) at least in your back pocket, just in case. In the Sweedish high dose ribavirin study two of the participants had two transfusions each, both went back on riba after a short layoff, and both ended up SVR. "Alagirl" I believe has just had her second transfusion on tx, and I believe the plan is to keep going.

All the best,

-- Jim

[B-bunch]

Thanks for the advice. I'm getting my PCR (week12) next week. I'm starting 60,000IU tomorrow. And I had to dose reduce to 600mg from 1200mg on Friday per my doctors orders. I'm afraid I'll relapse again like I did the 1st go-round last year after stopping at 24weeks because of 8.5 hemoglobin.

[GrandOak]

I had mine reduced the same way within the first couple of weeks of tx and then spent months adjusting Procrit and Riba dosages until I was able to regain full dosage again.  In the end, I was pulled from tx after 10 months because the last 12 weeks, which was with full med dosage, showed VL increasing.

[jmjm530]

I screwed up some of the numbers, so I'm going to re-write the last paragraph.  But in summary -- given the 2-4 week lead time of Procrit -- seems that your options right now are either to take a signficant drop in riba, like your doc suggests, or ask for a transfusion.

-----------
It's possible you might get away with an incremental drop in ribavirin (down to 1000 or 800 for example) with an increase in Procrit to 60,000. The problem is -- and no doubt why your doc wants to go down to 600 now -- is that the Procrit will probably take 2-4 weeks to kick in and given your drop you will be in a danger zone then.

Therefore, the only alternatives that make sense to me now are either follow your doctor's advice -- a dramatic reduction to 600 mg or ask him for a transfusion along with a smaller drop to let's say 800 mg (possibly 1000) with a concurrent increase in Procrrit to 60,000.  Then, post transfusion, gingerly amp the riba back up if you can tolerate while monitoring blood counts once or twice a week.

[jmjm530]

You might ask for 60,000mcg as I'm not sure 80,000 will provide better results. I had better results with 60 than 40, but never dropped as fast as you did.

What's your genotype, how much do you weigh, and do you have any viral load number since you started treating? It's possible you might get away with an incremental drop in ribavirin (down to 800 for example) with an increase in Procrit to 60,000. The problem is -- and no doubt why your doc wants to go down to 1000 now -- is that the Procrit will probably take 2-4 weeks to kick in and given your drop you will be in a danger zone then. Therefore, the only alternatives that make sense to me now are either follow your doctor's advice -- a dramatic reduction to 1000 mg or ask him for a transfusion along with a smaller drop to let's say 800 and added Procrit. Then gingerly amp the riba back up if you can tolerate while monitoring blood counts once or twice a week.

-- Jim

[B-bunch]

I have been on 40,000mcg of  Procrit since I started 10 weeks ago. I get it for no charge on the patient assistance program.
I started my Hemoglobin at 14.
Every 2 weeks I have been tested and the numbers have fallen.
week1 -13.5
week3 -11.8
week5 -  9.0
week7 -10.2
week9 -  9.7
week10 -8.0
I really don't want to reduce the riba dose, because I've heard such negative feedback here on this chat room.
I'm going to call my hepatologist on Monday and see if I can double the procrit to 80,000mcg.

[merryBe]

doctor, if you lower my Riba and lessen my chances of curing because procrit is expensive who is helped, me or the insurance company? Doctor, if I fail to go under, or my VL raised up due to reduced dose, will this be something I should discuss with my attorney?
What containdications are you using making the decision to not allow me procrit?

these 3 questions should help you and your doctor to resolve your tx.
If you went und quickly and have stayed UND, he may feel you can do with less, but theres too much to each case to know what he;s thinkin and why.

you need to ask those questions and get good answers or move on to a more communicative doc.

[jmjm530]

Unfortunatly, you should have had this discussion with your doctor when your hemoglobin was closer to 10. How often have they been doing blood counts and what were the results? This can help calculate the rate of decline.

But at this point, assuming you have not leveled off, you may soon be faced with a decision to either reduce meds or have a transfusion. Of course, Procrit should be started -- or actually should have been started -- but the problem is it takes 2-4 weeks to kick in, and you may not have that 2-4 weeks with such a low hemoglobin, unless you're one of those in the minority who can tolerate low hemoglobin levels very well.

"Mre" is making some excellent points. Your last treatment history may be useful in determining what to (or what not) to do. Lastly, you should push for a viral load test now -- and weekly for the near term if possible -- to track viral load in the midst of what be a potential riba dose reduction. Hopefully you will be able to hold on until the Procrit kicks in, but no guarantees at hemoglobin 8.

All the best,

-- jim

-- Jim

[mremeet]

I notice you said you've treated three times before. Has this happened before and if so what was done about it? What's being done differently this time? Obviously you must know about procrit right? It can be used to elevate your HGB and help stave off a dose reduction. Dropping down to 600 is a big reduction, that'll hurt your odds especially if you haven't reached UND status yet.

[Lady Lauri]

   I don't think ?? a normal period should affect the hgb much, tho when I had 4 in one mth. at start of tx, I'd say it did.

  I believe 8 is very low! Can't you do procrit, rescue drugs?
I don't know enough to give my opinion on lowering so much in 72 weeks, Geno 1, others will tho.
Just wishing you well. Hopefully if they lower awhile, will take it back up??

                                                                      LL

[copyman]

have you had any pcr tests up to this point? especially the 4 week? can the doc give you procrit instead? best of luck