Boy this feels like deja vu.... When the Swedish pilot study was published in February, I was persuaded that extra riba was the way to go. I, too, weight 135 lbs. and had been assigned 1,000 mg. I upped my dosage of riba to 1200 mg, had two bad days, and then adjusted quite well. I maintained this dose for three weeks before titring up to 1400 mg. (I had already predetermined not to exceed 1600 mg, based on my close reading of the study.) I lasted only a week at this level before bailing! Experienced immobilizing fatigue and considerable eye pain and vision blurriness. The optic effects scared me. So now I'm back to 1200 mg when I feel the pegasys shot tapering off: 4 days at regular riba dose, and 3 days at 1200 mg.
I had a very reputable hepatologist tell me that there was no point in elevating riba after the initial 12-week period, but I personally disagree. The Swedes actually began titring up AFTER that point, and I happen to feel that keeping the pressure on for the duration of treatment works best. I am concerned about keeping up with mutation and doing as effective a scouring job as possible on those darn little quasi-species.
One thing we DO know: riba dosing is still a matter of controversy, and the only thing that keeps hepatologists from experimenting more freely with it is the high toxicity profile. All I can say is listen to your body. You'll definitely know when you've gone too far.
One thing to keep in mind regarding the Riba escalation issue: Procrit or similar rbc generating drugs are almost absolutely essential to tolerating the dose increases safely. Even with heavy Procrit dosing, several times a week, the rbc counts may still go dangerously low, when doing experimentally high doses of RIBA. People in the Swedish study sometimes needed transfusions and hospitalization in order to continue.
I would bet that the high doses are very helpful to SVR, the real issue is: can patients withstand the powerful effects?
Maybe one of the new RIBA derivatives being tested, which cause less anemia, will be useful in 'megadosing' strategies, and provide less side effects and higher safety.
I have always believed that with enough Interferon, and enough Ribavirin, almost ANY GT 1 HCV patient can clear, and SVR ultimately. The problem is that some may require amounts of both that doctors find too dangerous to attempt. Many cancer patients receive huge doses of interferon, for longer periods of time, than do HCV patients, for example. Maybe doctors do not view HCV as being quite as life-threatening as cancer. Maybe they should modify their thinking!
DoubleDose
Thanks mikesimon. Someone finally put the log drop issue into language I understand. My baseline viral load this time around was 1,370,000. If I am figuring this right we are looking for 13,700 to have a 2log drop? I get my results next Thursday. It will only be after 4 weeks and we are not looking for the 2log drop for 12 weeks but the doctor and I are both curious to see what is going on with the daily infergen. Today was injection #35. I was hoping this was going to even out but it is still kicking my butt. Hopefully some good news with the lab results will give me a better outlook.
Yes, these are important issues to raise. As for myself, I was already on a bi-weekly schedule of Procrit and simply moved my shots up to every 10 days instead of every 14. It worked, and my labs reflected no change whatsoever.
That would be "bi-monthly." Sorry.
Layla: What kinds of lingering riba effects?
I still have the rash I had on tx. I also still get nausea. My energy is so much better but I still get so very tired at times. I also get that pain in the liver area that started on tx but it is not near as bad as it was. My eyes are often still dry but again not near as much as on tx. The joint pain bothers me the most. When I stopped tx I did not notice a thing for at least a month. I was very dissapointed but after a month the first thing I noticed was suddenly my energy came back and that felt great but like I said for a month nothing. I finished tx last summer the 1st of July. I just hope this all goes away. I have just been waiting but called my hep doc due to an increase in joint pain. I see him Friday.
DD I beleive you had sx for a long time after tx. Does this sound familiar to you? I am worried that perhaps I relapsed. I was SVR at 6 months post tx. I did 18 month of full tx. What do you think? LL