Aa
Comparing Meds
Finally! My nurse hates me, but she did finally fax my medication request over to the pharmacy today and they are fed-exing my meds to me tomorrow for Friday. She is annoyed because I was anxious to get them and kept calling her (hey, she's had two and a half weeks two do it). Anyway, apparently I don't get to start them on Friday unless I can get the nurse to come by then because they have to teach me how to give myself the pegasys. They were unmoved by the fact that I already give myself procrit. They want to show me. So anyway, but.
I was going to ask about the meds. I weigh 125 lbs and I am on 1000 mg of the riba with the pegasys. Does that sound average or the same or different from everyone else who starts the combo in terms of the riba amount? Also, like someone else (can't remember who) I'm also being instructed to take part of the riba in the morning and the other part of it at night. I can't remember if it's two pills in the morning and three at night or the other way around (I'll see when I get the meds), but I thought most people just took it once a day? I mean, I'll do whatever works better, but I'm on a lot of other meds and I just take everything at the same time, so I'll have to do an extra deal or whatever. She said that the pegasys is the alpha-2a. Anyway, my family is a lot more upbeat about this than I am. I am very very hopeful that I have everything going for me, except my genotype of course, which is 1b (you know, I'm low viral load at 182,000 and I'm starting within four months of my exposure/infection), but they are just not even open to discussing that this might not clear me. They are just looking at it like it's 100% that it will work, and I feel my chances are better than worse, but I guess I don't want them to have false hope given that it's not 100%, and that I already have some medical issues, like my weird anemia which may well be auto-immune, which may mean I'll respond differently. It's like I'm the patient but I'm more worried about how upset they're going to be if it doesn't work.
Anyway, is my combo therapy basically similar in terms of dosage and everything to anyone else with my weight? Oh yeah, any other helpful tips you can give me as I plunge into the treatment? They said to drink a log of water, but I think I actually had read that here first.
I was going to ask about the meds. I weigh 125 lbs and I am on 1000 mg of the riba with the pegasys. Does that sound average or the same or different from everyone else who starts the combo in terms of the riba amount? Also, like someone else (can't remember who) I'm also being instructed to take part of the riba in the morning and the other part of it at night. I can't remember if it's two pills in the morning and three at night or the other way around (I'll see when I get the meds), but I thought most people just took it once a day? I mean, I'll do whatever works better, but I'm on a lot of other meds and I just take everything at the same time, so I'll have to do an extra deal or whatever. She said that the pegasys is the alpha-2a. Anyway, my family is a lot more upbeat about this than I am. I am very very hopeful that I have everything going for me, except my genotype of course, which is 1b (you know, I'm low viral load at 182,000 and I'm starting within four months of my exposure/infection), but they are just not even open to discussing that this might not clear me. They are just looking at it like it's 100% that it will work, and I feel my chances are better than worse, but I guess I don't want them to have false hope given that it's not 100%, and that I already have some medical issues, like my weird anemia which may well be auto-immune, which may mean I'll respond differently. It's like I'm the patient but I'm more worried about how upset they're going to be if it doesn't work.
Anyway, is my combo therapy basically similar in terms of dosage and everything to anyone else with my weight? Oh yeah, any other helpful tips you can give me as I plunge into the treatment? They said to drink a log of water, but I think I actually had read that here first.
I figure you're definitely right about it being a very complex issue. I plan to run cbc's weekly if I need to if there is a period of turmoil. Right now, I keep my hgb in the 13ish area (try to, although I noticed that this virus itself pulled it down recently). Its definitely going to be a tx issue.
Re the riba and Procrit. You seem to have a lot of experience in monitoring hgb/adjusting epo doses. Just be aware that things can get very tricky with ribavirin and its own brand of hemolytic anemia. Like Procrit, ribavirin takes some time to "work". Two to three weeks on average. So that means you now have two variables to juggle.
For example, I was started on the standard dose of 40,000 U/ml per week after symptons of anemia at a time when my hgb dropped more than three points from pre-treament baseline (hgb 14.8) in a couple of weeks. This was at the beginning of treatment.
Hgb finally stabalized in the 12's and high 11's where both me and my docs were comfortable. Later, however, hgb started rising so a decision was made to inject every other week. Everything was fine for awhile, but then all of a sudden my hgb dropped significantly. To make a long story short, I ended up on 60,000 U/ml per week to "catch up" and catching up wasn't easy. Later, I alternated between 40,000 and 60,000 per week. You will read many stories in our archives of people doing similar -- or stopping epo altogether -- because their hgb improved, only to later end up in big trouble. Point again, it's a little tricky, again because of the 2-3 week lags of riba and epo, both pulling in opposite directions.
-- Jim
For example, I was started on the standard dose of 40,000 U/ml per week after symptons of anemia at a time when my hgb dropped more than three points from pre-treament baseline (hgb 14.8) in a couple of weeks. This was at the beginning of treatment.
Hgb finally stabalized in the 12's and high 11's where both me and my docs were comfortable. Later, however, hgb started rising so a decision was made to inject every other week. Everything was fine for awhile, but then all of a sudden my hgb dropped significantly. To make a long story short, I ended up on 60,000 U/ml per week to "catch up" and catching up wasn't easy. Later, I alternated between 40,000 and 60,000 per week. You will read many stories in our archives of people doing similar -- or stopping epo altogether -- because their hgb improved, only to later end up in big trouble. Point again, it's a little tricky, again because of the 2-3 week lags of riba and epo, both pulling in opposite directions.
-- Jim
About the rbc's. In this case, I feel that I may be somewhat at an advantage. My insurance company gives me whatever I want on the procrit (unusual sometimes for anemia applications here). They never even batted an eye. So I have a hematologist at UAB who follows me yearly, or more often if I need it, but a local doc who calls in my scrips. I have scrips through the next year.
MY plan (which of course I'll discuss with the doctor) - is to do what I have always done, and adjust dosage as per my regular anemia b cbc's with reticulocyte counts. By having this bloodwork done every two weeks I look at the overall profile and also the pattern on the reticulocyte count to see if I'm coming or going and I adjust as needed to stay at basically the same hgb. (I know a lot of people focus on the crit, I just try to stay at the same hgb and the crit works itself out). I figure (and we'll see how well this pans out) that with hemolysis in addition to difficulty in producing epo naturally, I'll probably end up using larger doses of epo, a little more frequently eventually. But I'm pretty used to adjusting my procrit (actually, I take epogen, but same thing) according to my labs (It's kind of like poker if you're counting cards).
There are unknowns of course so I "look forward" - right - not so much, to seeing what happens with fewer mature cells as will happen with hemolysis while there are tons of new cells all the time because more new cell production has to be started to keep the hgb level up. It will definitely be a different anemia ride because the substance of the resident rbc's may be adequate but of a very different age, and that's some pretty complicated hematological theory that I don't even begin to pretend to know about, nor how to deal with. Good thing they have doctors huh? lol So... if things start looking wonky, I'll definitely get UAB very involved with all of it. I plan to go see them as tx gets underway to let them know what's going on. There is apparently a very good hospital (not that UAB isn't, but, with specialists particular to rare or recalcitrant anemias in Atlanta, and my hematologist has always said that if things weren't working or we needed to really find out definitively what was going on, he would either confer with them, send specialized tests to them for me, or send me there. You know, when you aren't making epo, you always want to look at renal function and they can't find anything bad there and they even went in with a cath, so they are just a little flummoxed, and I'm pretty well out of ideas on it too.
So, I feel I have good resources nearby and good family with my son here, and my dad and stepmother in the same town (she's thrilled because she has IBS and (oh yeah, I have a gastro not a hepa, yeah yeah I know, but he's good - so far anyway) and I have the same specialist she's seen for 20 years (but didn't know it til she drove me there today). The other thing I can't, of course, figure ahead of time is how the tx will make me feel and whether I will feel level headed enough to rationally keep everything tx-wise together with good decision making. My mother though, is very well versed and if anything hinky comes up, she'll come up here and get involved. My father and stepmother are here but they aren't as medically sophisticated as she is.
MY plan (which of course I'll discuss with the doctor) - is to do what I have always done, and adjust dosage as per my regular anemia b cbc's with reticulocyte counts. By having this bloodwork done every two weeks I look at the overall profile and also the pattern on the reticulocyte count to see if I'm coming or going and I adjust as needed to stay at basically the same hgb. (I know a lot of people focus on the crit, I just try to stay at the same hgb and the crit works itself out). I figure (and we'll see how well this pans out) that with hemolysis in addition to difficulty in producing epo naturally, I'll probably end up using larger doses of epo, a little more frequently eventually. But I'm pretty used to adjusting my procrit (actually, I take epogen, but same thing) according to my labs (It's kind of like poker if you're counting cards).
There are unknowns of course so I "look forward" - right - not so much, to seeing what happens with fewer mature cells as will happen with hemolysis while there are tons of new cells all the time because more new cell production has to be started to keep the hgb level up. It will definitely be a different anemia ride because the substance of the resident rbc's may be adequate but of a very different age, and that's some pretty complicated hematological theory that I don't even begin to pretend to know about, nor how to deal with. Good thing they have doctors huh? lol So... if things start looking wonky, I'll definitely get UAB very involved with all of it. I plan to go see them as tx gets underway to let them know what's going on. There is apparently a very good hospital (not that UAB isn't, but, with specialists particular to rare or recalcitrant anemias in Atlanta, and my hematologist has always said that if things weren't working or we needed to really find out definitively what was going on, he would either confer with them, send specialized tests to them for me, or send me there. You know, when you aren't making epo, you always want to look at renal function and they can't find anything bad there and they even went in with a cath, so they are just a little flummoxed, and I'm pretty well out of ideas on it too.
So, I feel I have good resources nearby and good family with my son here, and my dad and stepmother in the same town (she's thrilled because she has IBS and (oh yeah, I have a gastro not a hepa, yeah yeah I know, but he's good - so far anyway) and I have the same specialist she's seen for 20 years (but didn't know it til she drove me there today). The other thing I can't, of course, figure ahead of time is how the tx will make me feel and whether I will feel level headed enough to rationally keep everything tx-wise together with good decision making. My mother though, is very well versed and if anything hinky comes up, she'll come up here and get involved. My father and stepmother are here but they aren't as medically sophisticated as she is.
yes, and if the dosage is manageable there's no reason to change anything. However if things start to fall apart it may be useful to know a reduction still keeps you in the recommended WBD range.
I do feel your pain. I remember being nuts about all the hold-ups and anxious to begin. I was driving myself and the hospital/Dr.s nurses, insurance company calling all of them and being put on hold etc. Looking back on it 1 week wasn't going to make that much difference. Save your energy.
Teri
Teri
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