UND at week 13, already at week 54, myself i would reduce procrit to once a week but would have at least bi-weekly labs to keep an eye on my HGB.
Or one could go back to 1200 and stay on the same procrit, still would want at least bi-weekly labs..............Best of luck to you, looking good.
I think increase riba to 1200 see how hgb holds can always reduce again i personally did not tolerate procrit well ended up damaging valve in leg and had to have surgery most tolerated procrit well from what i have seen here regards steve
I assume this is about hubby. Now 41 weeks at UND and 54 into treatment, how many weeks does he intend to go. And, why?
If he is near the end of tx, probably not increase riba. If he is going to say 72 maybe increase the riba and keep steady on the procrit until hgb goes down and then make the procrit increase decision when he gets to a pre-determined level (like 10.5). My thinking is that if the plan is to be long and aggressive he may as well be long and aggressive.
I thought about this from the point of view of "what would I want to do if it were me?" I remember your previous post asking about extending to 72 weeks and I'm thinking that's what the aim is here. It's also the aim to clear the virus. So if he's tolerating the procrit right now then I would hold the procrit at current levels and increase the riba and see how he does with his hgb. While it's true that dosage reductions later in treatment have less of an impact than dosage reductions earlier in treatment, considering his stats, I would still aim to hit this thing with whatever he can tolerate. Depending on what his hgb does, then you can decide to go to maintenance procrit if his hgb holds steady enough.
The thing is, reducing the procrit or raising the riba is both going to like result in a decrease in hgb potentially. I think I would rather have a decrease in hgb from increased tx drugs hitting my system if I had to pick one and if the decrease is not so much, then bonus to have the extra tx drugs working on the virus.
The concern for me with lowering procrit only is that it takes awhile to do it's stuff while reducing riba back to current from an increased amount if necessary seems to have a faster result. So if you need to bring riba back down, you haven't lost much and might have gained a bit from the added riba. If you're able to add riba with little/tolerable impact to the hgb then maybe you can go to maintenance procrit which would be double bonus - increased riba and decreased procrit.
Is the risk of procrit use higher to him because of his stats or are you talking risk of procrit use in general? I'm wondering where your concern is there as a number of people here have been on procrit throughout their treatment and I'm not sure I've read of serious concerns of the ill effects as a result?
A recent article presented from Journal of Viral Hepatitis concludes:
"....In conclusion, our results have demonstrated that ribavirin is dose-dependently correlated with a relapse in patients with CH-C genotype 1 responding to Peg-IFN plus ribavirin. Maintaining a high dose (≥12 mg/kg/day) of ribavirin during the full treatment period could strongly suppress the relapse in such patients, while Peg-IFN α-2b could be reduced without affecting relapse in patients with c-EVR. This possibility should be explored in a prospective study."
The study attempts to distinguish the Schiff'man et all conclusion that SVR is not impacted by ribavirin dose reduction so long as the cumulative dose is above 60%. Although I was not thoroughly convinced by the argument my personal view is to maintain as high of a ribavirin dose as possible throughout treatment, even if that means supplementing with epoetin alfa.
Read the article as it is rather detailed.
From Journal of Viral Hepatitis
Ribavirin Dose Reduction Raises Relapse Rate Dose-dependently in Genotype 1 Patients with Hepatitis C Responding to Pegylated Interferon alpha-2b Plus Ribavirin
"The thing is, reducing the procrit or raising the riba is both going to like result in a decrease in hgb potentially. I think I would rather have a decrease in hgb from increased tx drugs hitting my system if I had to pick one and if the decrease is not so much, then bonus to have the extra tx drugs working on the virus. "
AGREE. I took epogen for 69 weeks of treatment at full dose (Plus) riba. At week 46 Dr. J made me drop some riba (I was taking way over my weight based) and it helped a lot. However at week 46 I figured it was alright to finally do this and I was still over weight based anyway. He insisted that too much epo for too long was a risk that shouldn't be taken. I believed him but had already been UND for what 22 weeks at least and I knew I was going to do the extra six months at weight based - not UNDER.
I hold to the full riba concept. There have been studies relating reduced riba to potential relapse. I'd try to get back to full riba dose and if you can hold hgb up, then I'd see about reducing the procrit frequency. My doctor was okay with reducing the peg (and I was reduced for about 2/3 of my TX) but adamant about staying at full riba.
I believe your husband is treating for 72 weeks.
Therefore, I would increase Riba to 1200 mg. and watch HGB closely. Hit this thing with everything you've got Eureka.
I'm rooting for you...
I would also consider the quality of life issues here. Not sure why your husband needs to do anything differently than he is now. Can't he just enjoy a higher hgb level for his remainder of tx? I seriously doubt that increasing riba back up at this point would have any impact on his odds of SVR.
"I seriously doubt that increasing riba back up at this point would have any impact on his odds of SVR. "
I disagree. He's at Week 54 out of 72 and went UND at 13 weeks. I think, especially in light of what Mike posted, the rule of thumb of 100% of the drugs 100% of the time as much as possible, the impact of relapse here considering his advanced stage and what it would mean to retreat, I would want to hammer it, if it were me, as long as it's tolerated and not risking overall health.
If quality of life is so compromised that it threatens adherence to treatment, that's a consideration. If I'm going to compromise one or the other, it's going to be quality of life for awhile - I say that while recognizing it is an entirely personal decision and that is my opinion only.
Can't he just enjoy a higher hgb level for his remainder of tx? "
Something about black box warnings over having epogen have you go up and over 12 is important althought I can't remember exactly what it is.....epo is a dangerous drug - even though it is an absolute miracle worker you have to be VERY careful how high your hemo goes.
I agree with not dose reducing to get SVR but as well doctors are pretty leery of epo just cause of that reason.
" I think, especially in light of what Mike posted, the rule of thumb of 100% of the drugs 100% of the time as much as possible"
I agree with this I"ve never understood the 80/80/80 because it almost makes you feel like you can screw up and miss a couple and not have it matter.....like a permission or something It is CRUCIAL to bev 100% compliant to beat this crappy disease (as best as anyone can be compliant anyway)
Well, the 80/80/80 rule was the MINIMUM - preference is 100/100.
epo given when Hb IS ABOVE 10 is a bad idea above 11 is stupid and above 12 dangerous,
"epo given when Hb IS ABOVE 10 is a bad idea above 11 is stupid and above 12 dangerous, "
What do you base this on? Many persons on HCV treatment are on procrit above 10.0 and for males, 11.0 can be quite low for hgb. Furthermore, many HCV patients are on maintenance doses of procrit for a significant portion of their treatment above the 10.0 level you've stated as being a bad idea to prevent hgb from dropping too low, which it would do without that procrit maintenance dose.
This is a previous discussion on procrit and ribavirin dosage reduction here and a number of the posters had procrit above that 10.0 mark.
I only went below 10.0 once. They reduced my ribavirin at that point at 13 weeks. After that week, my hepatologist put me on procrit and I stayed on it for most of the rest of my 34 weeks to keep me above 10.0 to avoid dosage reductions as the trial mandated they were required when hgb dropped below 10.0. When they took me off procrit for a time, my hgb dropped close to that 10.0 mark after getting up around 13 or so. He put me back on it and I stayed on it until treatment stopped for me. It had nothing to do with tolerability, I was managing okay with my hgb staying in the 10's most of the time. It had everything to do with avoiding dosage reductions and is a very valid use of procrit.
It's a good idea to get knowledgeable advice and a good idea to understand the rules of the game. There is nothing wrong in not getting hemoglobin whacked on treatment. I saw a hematologist for the blood side of things and we agreed that my hgb would stay between 11 and 12. He did a great job with the Aranesp (not Procrit) and I stayed in range the whole time. Since I got it in a clinical setting (his office) it was handled on the medical side of insurance and he was allowed to administer under 12. If he had prescribed Procrit he'd have to wait until 10 and then I'd have to pay an Rx copay. The Aranesp in the office I got sooner and cost free. Being functional in tx2 made a big difference.
I agree with Trish.
Risk of relapse - no matter how small - far outweighs quality of life issues.
Further, my doctors have done a great job of keeping my HGB within range (we keep it between 10 and 12) with a Procrit injection every two to three weeks. For me, it's kept me active and most importantly, able to continue treatment. I have had no side effects from it.
the risk of stroke for one!!!! increase risk of cancer later in life the list goes on , hb of 10 might not be great but it is doable for most people especialy females
Eureka, I realize also that saying "what would I do if it were me" is easier when it's not me. Joey_M's point on QOL is valid in context and it's finding that balance you're talking about that we all run into on treatment - between getting rid of the virus, not compromising our health too much and not compromising QOL beyond a mentally healthy place. Hard stuff. Good luck to both of you in determining what's right for you.
You're ignoring the dosage reduction we're trying to avoid. Many of us on procrit were on it above 10.0 to AVOID dropping into a range where a dosage reduction might be required. Procrit takes awhile to kick in - 3 weeks is the norm - for me it took six weeks before any significant change. Once our hgb levels were at a certain place, maintenance doses of procrit were necessary to keep those hgb levels up and out of dosage reduction territory. Stopping procrit completely tends to drop the hgb back down again and same problem is back. We're trying to get a cure here and hopefully to only have to do this treatment once. It's definitely a balancing act.
i am not suggesting procrit is not used, just use with caution 10 is the cut of hence why i said ABOVE 10 is a bad idea , yes i know it takes time to work but 10 is easily manageable for a female in particular in fact 8.5 is doable i know plenty of people including men who coped on 8.5!!!!!!!!! here in the uk it is not dished out, sometimes to the detriment sometimes for good reason , the OP is und at wk 13 now wk 54 a small drop would not be an issue , also hb tends to stabalise with in a gram so they would not see a big drop, also the OP has a HB of over 11 why do they need to risk a stroke ???? they dont do they
I have already told you...in my case it wasn't a tolerability issue. I was tolerating just fine. I was on procrit to keep my hgb above dosage reduction level as are a number of people. Tolerability is relative as well. If an hgb of 11 as a man lays you flat, then it lays you flat. No point in pretending it doesn't and just looking at a number and treating based on what you SHOULD feel like. I'd be repeating comments I've already made to say more so I'll leave it that we have different viewpoints on this.
10 is the magic number,mine was 10 average all the way tru TX...i was lucky.
8.5? I don't know what your baseline Hgb is but 8.5 was too low for me. At 9.5 I would sit in my car for 10 minutes trying to get the energy to walk the 100 feet to my office. I guess it's a very individual thing. I was lucky to get Epogen. It made a world of difference and, in my opinion, didn't expose me any unnecessary risks.
The problems I have seen with epoetin alfa occurred in renal impaired patients, cancer patients, patients with cardiac disease, uncontrolled hypertension, clotting issues or a history of stroke or seizures.
I am likely missing some disorders but I cannot recall seeing any of these epoetin issues in patients who treated for TX induced hemolytic anemia. I would guess that some do exist but I can't remember reading about them.
i didnt say i had a hb of 8.5 i said others,
yes hb is a personal thing some will cope better than other at lower levels , it does not change the fact that procrit can be dangerous if abused, a hb of 11.3 does not warrant procrit it is not needed the risk out weighs the benefit at THIS level.