It's good that your husband's already RVR: hopefully the dose reduction will have less impact. I know exactly what you mean about 'can't argue very much with the doc'! My husband had to reduce from 1200mg daily to 800mg at around week 24 (hgb down to 8s), and it was a little nerve-wracking, but the nurse assured us that reducing after undetected and in the later weeks of treatment has less impact. (He did have to add Procrit and is holding on at 1000mg a day.) Though my husband isn't in a trial, he's had very similar symptoms -- the anemia, the nausea, a/d meds... and can't get/keep water down. I don't know about how 'effective' it is vs. drinking water, but he makes do with mostly cola (caffeine free when available), ginger ale, and watered down cranberry juice does ok too. Hope that helps. Hang in there!
He has to adhere to the trial guidelines and if the trial folks say riba dose reduction first there's really not much he can do. Since he RVR'd and is at the 12 wk mark, a dose reduction isn't as critical as in the first 12 wks. Of course starting Procrit now would be the ideal scenario but since that's not going to happen and 9.3 being low, hopefully the 2 wk reduction will boost that hgb back up. I don't know how much your husband weighs, but a 1000 mg of Riba is still a fairly hefty dosage.
It's good to know Procrit is on stand by in the event the dose reduction isn't enough.
Also, nutritional supplement drinks like Boost or Ensure can help with the weight loss and hydration. Unsweetened fruit juices are good as long as you don't drink too much because of the natural sugar content and I found Crystal Light very refreshing.
I liked the peach tea which contains no caffine, it's just more or less flavored water.
I guess at this point, anything he can keep down is a good thing just so he stays hydrated.
Good luck and fingers crossed that hgb rebounds.
Ginger helps nausea. I suggest ginger tea and ginger ale for hydration.
I was in the Telaprevir trial where Procrit and helper drugs were not allowed at all. When my hgb dropped I was Riba reduced for 11 weeks. Six weeks at 600mg, and 5 weeks at 800mg. It took eleven weeks for the hgb to go up to 10. I did 24 weeks of tx and am now SVR, so in my case the reduction did not matter and I was also RVR at week 4.
Congratulations on the RVR! The strong Hgb drop suggests he's definitely not under dosed at 1000 but you didn't mention weight. Calculate mg/kg/day under the reduced dose; you want this around 13.2. If it's much less than that it might be worth bringing the following (documenting effects of rbv dose reduction) to the Drs. attention and arguing for epo instead of a reduction
the procrit will take a while to kick in, a couple of weeks at least, so the squeaky whell will get the grease. Whether in trials or not it seems docs are always preferring not to add procrit...but then, they aren't the probverbial fish gasping for air on the shoreline are they.
I'd take the studys Willing provided in were I you, and demand it be addressed.
Being a guinea pig is one thing...you have something you may gain.
Being suffocated to death is another...but until patients become proactive the tide will not turn. Every cancer patient get's procrit at those numbers...it's discriminatory not to give it to us for the same condition, extreme anemia.
"The doc did say if lowering the Riba dosage doesn't work, he would probably start Procrit after two weeks. "
I'm assuming there's a trial-mandated dosage reduction cutoff such as 10.0 or something? Which means your doc has to abide by that. Obviously the trial doc is willing to use the procrit so it's just a matter of when he introduces it. I'd ask him to start procrit now to help get the hgb up and away from dosage reduction territory to avoid future dosage reductions. It's worth asking. With your husband's hgb so low, it would suggest that immediate use of procrit would be beneficial to get the hgb up and out of dosage reduction territory as resuming ribavirin could drop it again and with procrit taking weeks to kick in, I'd ask to start now with the goal being to avoid future dosage reductions. He just might say yes.
Thanks so much everyone, for the advice and suggestions. I'll definitely print out the studies Willing referenced and take them with us on our next visit. I feel as many of you do, that starting Procrit now would be the best scenario. But we feel we are walking a fine line with the trial doctor. We have been the squeaky wheel--maybe too much so. On the last visit with the trial nurse and doc when my husband tried to explain the severity of his side effects, the doctor looked at him sternly and said, "I won't hesitate to take you out of this study if I feel your health is at risk." (I had emailed the doc directly because my husband was already having numerous side effects that weren't being addressed and asked that he meet with us when we saw the trial nurse), At that same visit the doc scheduled hubby an appt. with a cardio doc because of a heart rhythm concern. We asked about rescue drugs at that time and he just shook his head and said, "Not needed yet." So....on one hand we feel if we keep complaining, my husband might be taken out of the trial, and on the other hand, if we're not proactive we feel that he's not going to get the care that he needs. Do docs take patients out of trials because they are having "too many side effects?" We're going to a teaching hospital that has a very good reputation, but they are without a designated "Hep C" doctor now and the head of the Hepatology dept. is supervising the clinical trials. We kind of got the impression that he didn't really support this clinical trial, but maybe we were wrong.
I work so hubby's at home by himself. I've tried to make everything as easy for him as possible--give his meds before leaving for work, have food accessible, etc., but when I called at noon he was still in bed sleeping. He's totally exhausted. His next appointment is March 8th. He'll also see the cardio doc on the same date. Do you think we can safely wait until then to bring up the issue of Procrit--even if his Hgb is up some? I read through the trial protocols and it doesn't mention rescue drugs so I'm assuming this issue is left up to the supervising doctor. BTW--he weighs 210 lbs.--down from 245 three months ago and he's lost a lot of muscle mass.
Blessing to all and thanks again!
1,000 is very little for a person of that weight to me. I was 5'7 and 120 when I started - very thin and yet my doctor approved me up from 800 to 1,000 (although I do admit I did more).
PS If you can convince the doctor to give it to him there is the longer lasting version of Procrit - then he wouldn't have to do the shots as frequently, perhaps that would be a compromise your husband could live with. If that swelling stomach problem is a big deal. Just thought of that use the leg and the longer lasting one!
For some reason I can't put the name in my head but I'm sure somebody else in here will remember!
I was on the Phase 1b trial of this drug and they do have to adhere to some very strict trial protocols. Remember that "first do no harm" is the beginning of the Hippocratic Oath!
I also had to take a riba dose reduction after achieving an RVR, I think it may have been around week 9 or 10. I was dropped by 200 mgs a day (1200 down to 1000) and no rescue drugs were permitted in my trial.
As soon as my HBG cam back up again I went back to 1200 per day. I had to be very proactive in making sure I knew what my HBG levels were doing and I specifically asked for the full dose to be reinstated.
I also really understand your concerns about not wanting to be a thorn in the side of the study due to having too many side effects - I felt the same way! A lot of the time I didn't tell them everything that was happening to me for that reason. I kept a very close eye on all my test results and every time there was a blood draw I asked for the results to be sent to me also. I would try everything I could to raise my levels naturally.
Anyway, the point of my post was to say that despite riba dose reductions (I had to take another one much later in treatment and spent the last 6 weeks of 48 at 1000) I achieved SVR.
Please try not to worry too much - it sounds like hubby is responding well and R7128 is an excellent Dragon Slaying weapon!
I was on the telaprevir trial and had my riba reduced from 1200 to 600 at week 18 and at 6 weeks eot, still und. with rvr. so do what the doc suggests, they know best.