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.
Upon further research, it appears that hemolysis (a macrocytic anemia), will prob cause changes in my MCV (mean cell volume) readings - which I view in the panel I do. They should increase as my anemia becomes macrocytic in nature as opposed to normocytic, which it is now.
Cells dying early = higher MCV
Lack of production in the first place = lower MCV
still, its gonna be one big bog for a while possibly.
anemia b profile gives platelet counts and diff also, don't know if those are in the regular cbc
that is as much as I know in the WORLD. lol so I am taking a nap now. You know, a pre-weekend nap. Just in case I get tired having too much leisure...
Cells dying early = higher MCV
Lack of production in the first place = lower MCV
still, its gonna be one big bog for a while possibly.
anemia b profile gives platelet counts and diff also, don't know if those are in the regular cbc
that is as much as I know in the WORLD. lol so I am taking a nap now. You know, a pre-weekend nap. Just in case I get tired having too much leisure...
Ah... but now we have the addition of hemolysis. So I'll be watching baby cells but there isn't a handy little method for me to see the death of the cells in hemolysis. So... I will have to add that as an intervening factor by seeing how much it swings the system. Should be fun right?
yeah. That backwater hematologist I was seeing four years ago already took care of that iron situation for a while. I have a much better hematologist at UAB now. The anemia b profile gives you you an entire cbc plus the following:
Iron Bind Cap (TIPC)
UIBC
Iron, Serum
Ferritin, Serum
Vitamin B12
Folates (Folic Acid), Serum
I always get it with a reticulocyte count. The reticulocytes are baby blood cells - I'm sure everyone knows, just sayin'
If you're getting cbc's done all the time, if you'll get a retic count with them, you can watch the level and see what the level is of the immature blood cells in your system. When charting out when to give the procrit and how much, it's very helpful to me to see where I am in terms of blood cell production.
Normally, the body senses that you are low on oxygen in your blood when your levels drop and your body has a system whereby it goes and tells the kidneys, hey guys, we need more blood up in here. And normally, the kidneys respond by making erythropoeitin, thus stimulating production of new blood cells.
In my body, either the guy that is supposed to talk to the kidneys died several years ago and nobody's found the body yet, or the jerk who is supposed to be handling the calls down in the renal area is drunk on the job. Or maybe they're both out in a boat together somewhere off Padre Island. Nobody really knows. But if I stop taking artificial epo, my reticulocyte count just continues to go down and down and down and... Basically, nobody in my body likes to work very hard.
But if I have a retic count that's low one week, and then I take it again and I can see that it's on the upswing, I know my body is producing new cells. And by watching the progress there back and forth, I've been able to adjust the procrit accordingly based not only upon my current rbc, hgb and crit levels, but according to whether my retic is on the way up or on the way down (or just sitting at the bottom of the pool holding it's breath). So its just this little system I've got going that seems to work pretty well for me in managing my anemia. And since it works, my docs are cool with letting me handle it. Of course, they review all the tests.
Iron Bind Cap (TIPC)
UIBC
Iron, Serum
Ferritin, Serum
Vitamin B12
Folates (Folic Acid), Serum
I always get it with a reticulocyte count. The reticulocytes are baby blood cells - I'm sure everyone knows, just sayin'
If you're getting cbc's done all the time, if you'll get a retic count with them, you can watch the level and see what the level is of the immature blood cells in your system. When charting out when to give the procrit and how much, it's very helpful to me to see where I am in terms of blood cell production.
Normally, the body senses that you are low on oxygen in your blood when your levels drop and your body has a system whereby it goes and tells the kidneys, hey guys, we need more blood up in here. And normally, the kidneys respond by making erythropoeitin, thus stimulating production of new blood cells.
In my body, either the guy that is supposed to talk to the kidneys died several years ago and nobody's found the body yet, or the jerk who is supposed to be handling the calls down in the renal area is drunk on the job. Or maybe they're both out in a boat together somewhere off Padre Island. Nobody really knows. But if I stop taking artificial epo, my reticulocyte count just continues to go down and down and down and... Basically, nobody in my body likes to work very hard.
But if I have a retic count that's low one week, and then I take it again and I can see that it's on the upswing, I know my body is producing new cells. And by watching the progress there back and forth, I've been able to adjust the procrit accordingly based not only upon my current rbc, hgb and crit levels, but according to whether my retic is on the way up or on the way down (or just sitting at the bottom of the pool holding it's breath). So its just this little system I've got going that seems to work pretty well for me in managing my anemia. And since it works, my docs are cool with letting me handle it. Of course, they review all the tests.
Not that familiar with the "anemia b with retic count" but do keep us updated if the 'early-warning system' you seem to imply translates over into riba caused hemolytic anemia. And I guess we will then nix the supplemental iron :)
-- Jim
-- Jim
I always run a complete anemia b with retic count so it gives me all of that data and lets me know whether I'm swinging up in terms of production or down by monitoring the retic carefully. I've been able to keep my levels freakishly stable until just lately. The hepc by itself (unless I have been ill with something else too - always a possibility) dropped my hgb quickly recently so I am going to be getting very regular tests because if I'm already being affected, then the hemolysis could really cause it to sink fast. and yeah, I have too much iron in my liver still.
At one point I was running 2 CBCs a week when things got wacky. Again, not sure how your type of anemia works, but hemolytic anemia from ribavirin can sometimes move fast and furious. I assume you've had iron store tests by now -- Ferritin and TSAT. They're not on the usual panel like serum iron, but it's important they're not low for epo to work. Or maybe you posted that you had too much iron?
Losing track of things today :)
-- Jim
Losing track of things today :)
-- Jim
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
I would dearly dearly love to do that. And. I asked for that. But. Both the pharm co. and the doc's office are adamant that I wait for this nurse person and I have already annoyed the nurse once... However, I may just say, which is true so far, that the nurse never called so I gave myself the dosage and call in for my lab schedule.
CHARM27
lol... why 6:55pm?... because it's 5 mins before my pills are due... lol
WILLING
With everything I've read.... seems like UNDER is worse than OVER... !?!
lol... why 6:55pm?... because it's 5 mins before my pills are due... lol
WILLING
With everything I've read.... seems like UNDER is worse than OVER... !?!
at the other end of the spectrum, the following dosing regime, used during the Toronto SARS outbreak, makes even the Lindahl patients, with their paltry 2.5g/day, look like wimps:
"A regimen consisting of a 2-g intravenous loading dose followed by 1 g intravenously every 8 hours for 4 days, followed by 500 mg intravenously every 6 hours for 3 days was considered very high–dose treatment."
from "Adverse Events Associated with High-Dose Ribavirin: Evidence from the Toronto Outbreak of Severe Acute Respiratory Syndrome", Muller et al Pharmacotherapy , April 07.
"A regimen consisting of a 2-g intravenous loading dose followed by 1 g intravenously every 8 hours for 4 days, followed by 500 mg intravenously every 6 hours for 3 days was considered very high–dose treatment."
from "Adverse Events Associated with High-Dose Ribavirin: Evidence from the Toronto Outbreak of Severe Acute Respiratory Syndrome", Muller et al Pharmacotherapy , April 07.
those angle brackets are giving the posting software gas, let's try again:
" a WBD of 800 mg for patients weighing less than 65 kg;
1000 mg for patients weighing 65 to 85 kg; 1200 mg for patients weighing 85 to 105 kg; and 1400 mg for patients weighing more than 105 kg but <125 kg (Fig. 1)"
" a WBD of 800 mg for patients weighing less than 65 kg;
1000 mg for patients weighing 65 to 85 kg; 1200 mg for patients weighing 85 to 105 kg; and 1400 mg for patients weighing more than 105 kg but <125 kg (Fig. 1)"
sorry that was a bit cryptic; anyway, Sept. issue of hepatology reports a recent analysis of riba dosing.
http://tinyurl.com/2bop6t
Not surprisingly WBD weight-based-dosing outperforms flat dosing. However the definition of WBD is "a WBD of 800 mg for patients weighing 85 to 105 kg; and 1400 mg for patients weighing >105 kg but <125 kg ". The older definition of 1000 for under 75Kg 1200 for everybody resulted in fairly extreme dosing for those on the low end of the weight scale. For example, in Shiffmann's AASLD'05 study of "high dosage ribavirin"
http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_a.html
the high-dosage group was given 15.2mg/Kg/day whereas if you weigh 125 and are taking 1000mg day (5 pills) you're doing a whopping 17.60. All good, but if the anemia gets out of hand it's good to know a dosage reduction would actually put you in the recommended range.
http://tinyurl.com/2bop6t
Not surprisingly WBD weight-based-dosing outperforms flat dosing. However the definition of WBD is "a WBD of 800 mg for patients weighing 85 to 105 kg; and 1400 mg for patients weighing >105 kg but <125 kg ". The older definition of 1000 for under 75Kg 1200 for everybody resulted in fairly extreme dosing for those on the low end of the weight scale. For example, in Shiffmann's AASLD'05 study of "high dosage ribavirin"
http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_a.html
the high-dosage group was given 15.2mg/Kg/day whereas if you weigh 125 and are taking 1000mg day (5 pills) you're doing a whopping 17.60. All good, but if the anemia gets out of hand it's good to know a dosage reduction would actually put you in the recommended range.
you gals weighing less than 143lb might want to take a look at last month's
Jacobson'07
Jacobson'07
that was cute and different....why 6:55 do you give yourself the shot?
Hope you do well.
Hope you do well.
i'm about your size (and have lost another 6 lbs since i started tx) and take 3 riba @ 7am & 2 riba @ 7pm... then every friday at 6:55pm, i do the shot...
I am curious about the Procrit that you are already taking, what did they say they would do once the reds die from the riba? Would they increase your Procrit or cut riba dose?
Sometimes you have to trade popularity for advocacy in your doctor's office to get things done right. Good that you pushed your nurse to do her job.
Yes, usual protocol is to split the riba. It could be 3 in the morning and 2 in the evening or vice versa. If breakfast is bigger than dinner, I'd say take the 3 riba with breakfast and the 2 with dinner. If dinner is your big meal, then reverse it. Reason being that taking riba with food is both kinder on your stomach and it also helps it to absorb better. Meals with riba should have at least a moderate amount of fat in them.
That said, some people take the larger riba dose in the morning, regardless, because they feel they sleep better with the smaller dose in the evening. Lots of ways to do it. Also, don't get hung up on taking the riba 12 hours apart. Riba has a very long half life, so the timing isn't as crucial as getting the full dose down the hatch every day. My usual breakfast on treatment was at 10-11AM and my dinner 4-5PM. So that's when I took my two riba doses.
As to treatment suggestions. Make sure you get a senstive 4-week viral load test (50 IU/ml or less) which should be taken the day before your fifth injection. Discuss this upfront so there will be no misunderstandings.
Also, if you havent' had a viral load test in a few months, try and get one right before starting treatment. That and at least a complete blood count. Also, make sure they do a thyroid panel periodically during treatment.
You mention only your nurse. Do you have a way to communicate with your doctor if need be? Don't be afraid to ask to speak to him directly. If he has email, ask him if you can use it.
I agree, no reason you have to wait for shot instructions if you're already injecting Procrit. Maybe talk to the doctor direct on this ask for another nurse if there's a choice.
Be well,
-- Jim
Yes, usual protocol is to split the riba. It could be 3 in the morning and 2 in the evening or vice versa. If breakfast is bigger than dinner, I'd say take the 3 riba with breakfast and the 2 with dinner. If dinner is your big meal, then reverse it. Reason being that taking riba with food is both kinder on your stomach and it also helps it to absorb better. Meals with riba should have at least a moderate amount of fat in them.
That said, some people take the larger riba dose in the morning, regardless, because they feel they sleep better with the smaller dose in the evening. Lots of ways to do it. Also, don't get hung up on taking the riba 12 hours apart. Riba has a very long half life, so the timing isn't as crucial as getting the full dose down the hatch every day. My usual breakfast on treatment was at 10-11AM and my dinner 4-5PM. So that's when I took my two riba doses.
As to treatment suggestions. Make sure you get a senstive 4-week viral load test (50 IU/ml or less) which should be taken the day before your fifth injection. Discuss this upfront so there will be no misunderstandings.
Also, if you havent' had a viral load test in a few months, try and get one right before starting treatment. That and at least a complete blood count. Also, make sure they do a thyroid panel periodically during treatment.
You mention only your nurse. Do you have a way to communicate with your doctor if need be? Don't be afraid to ask to speak to him directly. If he has email, ask him if you can use it.
I agree, no reason you have to wait for shot instructions if you're already injecting Procrit. Maybe talk to the doctor direct on this ask for another nurse if there's a choice.
Be well,
-- Jim
why not go to the pegasys website and watch the video on how to give yourself the injection and start tomorrow anyway. sounds like the right amount of RX. best of luck and may the tx make you SVR
As far as the Pegasus, it’s a one size fits all. Your Riba dose sounds like you are on the high end for your weight but many on this board think that’s a good thing. It may make your HGB tank, so watch your CBC’s closely.
It’s best to take 3 Riba in the am and the 2 early Riba in the pm as it makes some folks a bit speedy and you DO want to sleep at night. Take the Riba with a bit of fatty food for better absorption. Yogurt or milk or the like.
BTW, I live 50 miles south of B’ham. May I ask what area you live in Alabama. Are you treating at UAB? They have a liver center there.
Best to you.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
