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87972 tn?1322664839

Altering Tx and use for other posts

Hi everyone;

Well, my Tx is in a state of flux right now. In my post
23 Responses
Avatar universal

Be VERY careful with the riba increase -- very few doctors/patients in this country have any experience in this area. I'm one of those that has.

In a nutshell.

After reading about the Swedish very high ribavin study, I convinced my doc to increase my riba from 1200mg to 2000 mg/day. Within two weeks I ended up in the ER dehydrated and with anemia.
Had to go off riba for a week and now I'm bsck on normal dose.

If you are going to experiment with high riba doses (and regardless of what your doc says, "experiement" is what you're doing) I strongly suggest that: 1) You increase in weekly increments of 200 mg; 2) monitor your hemoglobin at least weekly; 3) Start Procrit prophylactively.

You also have to keep two very important things in mind. It takes about two weeks for the increase in riba to hit, and when it hits, it can hit real fast. I was fine one day and in the hospital the next. And second, it takes 2-4 weeks for the Procrit to kick in and increase your hemoglobin. So the time to take the Procrit is now, not when you're anemic.

Factor in the above, and you can why a a staged increase is a lot safer. The one thing you don't want to do is have to come off riba and/or need a transfusion. You may be lucky and not have the same sides I did, but why take a chance? If you can tolerate it, you can be up to your 1800/mg a day in only 3 weeks.

Did you ask your doc if he upped anyone else's riba 600mg in one pop and how they are doing? It might be a good question.

Remember, in Sweden, the only place I am aware they have high dose ribavirin in trial, they have a special blood test to measure serum ribavirn levels. In other words, they are not flying "blind" like I was or you are.

I think the high dose ribavirin route definitely has merit for hard to treat populations, especially if you have advanced fibrosis and don't have the time to wait for newer and safer treatments. Just keep in mind that the risks are more sides, and the fact that you may have to be taken off treatment if you cannot tolerate it. Two out of the ten patients in the sweedish study required two blood transfusions each.

That all said, I still may up my riba somewhere down the line to give myself a better chance at SVR (I'm at week 14 now, virus free at week 6) since I'm over 50 and a stage 3/4. But if I do it again, and that's a big IF, LOL, I will probably up my riba only 100 mg a week with weekly hemoglobin tests, and, of course, remain on Procrit.

Good luck!
Avatar universal

Just want to add that I have heard anecdotally a few cases where the high riba approach has worked mid-treatment in cases like yours using standard doses of Pegasys. So I think your doc is very progressive and potentially on the right track. In fact, 1800 mg/day is on the low end of the Swedish study and your doc may want to consider even higher doses later on if you can tolerate.

But again, the key word is "tolerate". One thing the Swedish study concluded, was that everyone metabolizes riba differently. 1800 mg for you may be very different from 1800 mg for me. And, according to them, this is less dependcent on body weight and more dependent on kidney function.

The elegance of their study is that they dosed every patient differently based initally on a formula (based on kidney function) and later on the actual riba levels as measured in blood plasma. But again, the special riba blood plasma test is not available in this country to my knowledge. If you are serious about going down this route -- and have the resources -- you might want to have your doc contact the Swedish researchers, and see if you can send some blood plasma over there for testing.
Avatar universal
Wow!  Good luck to you, I cannot imagine that much riba.
Avatar universal
I agree with the above comments.  You are on a potentially effective track, but you need to prepare fully for a possible big 'hit' to your hemoglobin.  I used twice weekly doses of Procrit to make it through 18 months of tx, and it was the key to my success.  I was able to keep the Ribavirin at full tilt.  You need to be out in front of any big drop in RBC, and Procrit would help you avoid any big catastrophe.  That said, I will say that several times during my tx, I was in the low 8's on my RBC, before using Procrit, and even during Procrit use near the end of tx, and was still able to function (barely).  So in other words, with where you are now, you still have a good amount of cushion, as far as falling red cell counts.  

I also did a dose of Peg-Intron that was about twice standard, which I really believe helped with the clearance times, and with long term eradication.  If for any reason the Riba strategy does not do the trick, the daily infergen should be highly effective, if you are forced to that strategy.  I would just advise that the 15 mcg. daily is much more effective than the 9mcg. dose.

Please keep us up to date on your progress.  Best wishes for success on this regime!!!!

87972 tn?1322664839
Jmjm--Thanks for the timely reply. Yes, this is definitely an experiment. I
Avatar universal
I weighed 165 when I went from 1200 to 2000 mg of riba/day which may have influenced my anemia. But then again, earlier studies from the same Lindahl group suggest that weight (as opposed to kidney function) is a poor predictor of anemia.  

When you do speak to your doctor, see if you can bug him about getting some Procrit now. I guarantee that if you keep upping the riba, eventually you will. (100% of the Lindahl study group ended up on Procrit.)

The only question in my mind is that if you know you're going to end up on Procrit, why wait and suffer? My pre-treatment baseline hemo of 14.9 dropped to 11.4 in just a few weeks which was enough to put me in the ER. It was back up to 13.6 with two weeks of 40,000 units of Procrit injections. Right now I'm still on Procrit and sitting pretty with a hemo of 14.

My experience and observations are that most docs (including mine) are too slow on the draw with Procrit and only seem to administer it when you're suffering. And that means you gotta suffer another 2-4 weeks. Not good.

In my case, I was on top of the world before the anemia hit and was wondering what all the big fuss with side effects was all about. Within a few days I was reduced to practially an invalid, got really depr3essed, and was literally hanging on to for several weeks just to stay on treatment. Anyone who has been there can tell you that anemia is not fun.

Good luck!

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