Aa
procrit/dangers w/tx
actually i have a couple of question. the first is about procrit and tx.
a little about myself and my tx. i have been on tx for 52 weeks 11-15-2007.
i am a geno 1-a 3-4 stge cirrosis and have been und for 36 of those 52weeks.
i take pgys at beginning 180mics+1200 riba and at 42 weeks was lowered to 90mic and 1200riba due to low platelettes (mid 20's) and hgl's from 8 to 10 and placed on procrit before this time because of the low hgl readings. on two seperate ocassions while on procrit my hgl went up to 14 the first time and today it jumped up to 14.9. i say it jumped because my hgl's were not rising enough so i was told to take 40mg once week to 40mg twice a week, and now i get the 14.9 reading.
the reason i was reduced in the beginning of pgys was because my platlettes were getting into the mid to low 20's. and my doc did not want to give me anymore nupegeon so he lowered my pgys.
now my platelettes are running at low to mid 30's some times up to 40.
the reason i ask about procrit and tx is i was concerned about the hgl's as well and when i did some research and saw i the group threads that aranesp was an option for hgl's. well needless to say when i researched them both i see that this drug can be potentially dangerous when hgl levels reach above the prescribed 10-12hgl the drugs is to be used for ..
in my research i found on the fda web site that either drug aranesp or procrit are pretty dangerous meds if not monitored religiously.
has anyone seen or heard of such issues concerning these drugs.
if there is such dangers using this type of drug is there an alternative or a supplement or another drug that could be used to raise hgl's.
the reason i am asking this as well is that the side effects of dizziness leg pain with no swelling lightheadedness shortness of breath neseau rash etc are all starting to manifest on this old body of mine and i was just a lot concerned enough to tell you all about it and what some of you might think
the other question i have is should i take a flu shot while i am goin thru all of this or should i wait until i have more answers to my question above.
thx's everyone! : O )
a little about myself and my tx. i have been on tx for 52 weeks 11-15-2007.
i am a geno 1-a 3-4 stge cirrosis and have been und for 36 of those 52weeks.
i take pgys at beginning 180mics+1200 riba and at 42 weeks was lowered to 90mic and 1200riba due to low platelettes (mid 20's) and hgl's from 8 to 10 and placed on procrit before this time because of the low hgl readings. on two seperate ocassions while on procrit my hgl went up to 14 the first time and today it jumped up to 14.9. i say it jumped because my hgl's were not rising enough so i was told to take 40mg once week to 40mg twice a week, and now i get the 14.9 reading.
the reason i was reduced in the beginning of pgys was because my platlettes were getting into the mid to low 20's. and my doc did not want to give me anymore nupegeon so he lowered my pgys.
now my platelettes are running at low to mid 30's some times up to 40.
the reason i ask about procrit and tx is i was concerned about the hgl's as well and when i did some research and saw i the group threads that aranesp was an option for hgl's. well needless to say when i researched them both i see that this drug can be potentially dangerous when hgl levels reach above the prescribed 10-12hgl the drugs is to be used for ..
in my research i found on the fda web site that either drug aranesp or procrit are pretty dangerous meds if not monitored religiously.
has anyone seen or heard of such issues concerning these drugs.
if there is such dangers using this type of drug is there an alternative or a supplement or another drug that could be used to raise hgl's.
the reason i am asking this as well is that the side effects of dizziness leg pain with no swelling lightheadedness shortness of breath neseau rash etc are all starting to manifest on this old body of mine and i was just a lot concerned enough to tell you all about it and what some of you might think
the other question i have is should i take a flu shot while i am goin thru all of this or should i wait until i have more answers to my question above.
thx's everyone! : O )
Jim -- re: at earlier points I sometimes did 14 and 10 day intervals, although the 14 day intervals were what got me into trouble.
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You know, with "regular" normocytic anemia, at least anemia of chronic or unknown disease, the type I have usually when I don't get the extra helping of hemolysis on the side, the ten and fourteen day gaps are reasonable, so its not so weird that you would try spacing it like that. This hemolytic anemia via riba induction is just way intense.
It is such a strange thing to me that before, I could have an hgb of 8 or 9, and yet take maybe 8,000 or 12,000 units ten days apart and my blood count would rise rapidly and I could easily stabilize it at about hgb 12.5 and just keep it there by dosing every couple of weeks, sometimes narrowing it to less time, sometimes throwing in an extra vial or deleting one, but still, I could keep it at the same hgb with a much more casual approach just by watching doing cbc's every two weeks or so and watching my reticulocyte count. It was such an easy anemia to manage.
Now my reticulocyte count is always on high, full force. I take more epo in a week than I used to take in months. An entire vial now contains what I used to get in a complete box of ten vials. Those old vials were 4,000 units each. Now I'm taking vials that are 40,000 units each. And even with all of that epo, it still takes weeks to see the effects (but only hours to start feeling the pain unfortunately), and once I get to where I'm going, I still don't know for certain what it will take to keep me there.
I mean, I've got some good educated guesses, and I've got great anecdotal wisdom from you and a few others and I'm hopeful my body will kind of follow suit, but still, there's a huge question mark for me on what kind of control I'm going to have on an ongoing basis over my red blood cell lines. I'll feel more comfortable I think in another three or four weeks or so when I have some more history and by then I'll hopefully have "peaked," reduced to the stable point, figured out what dosage at how often keeps me there, and stabilized. Hopefully. That's my fond hope and dream anyway. Lord knows we all need a dream...
Scratchinghead: It's hard for me to remember all those years ago when I was afraid of the syringes. I think it was back when I was a teenager and had to take allergy shots. I would sit there and stare at my leg forever and then I'd play "chicken" with my own thigh, trying to gear up to jab it in. Eventually I'd either do it or I'd end up driving to my mom's house so she could do it for me. Then later with my migraines frequently we had a bottle of nubain at the house and after a while I got tired of having to have someone drive me out to my parent's house every time I had a migraine. And when I was in that much pain sticking a syringe into my thigh just didn't seem so scary anymore relative to the pain I was in, so I think that's probably how I first really got over my fear of giving myself an injection.
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You know, with "regular" normocytic anemia, at least anemia of chronic or unknown disease, the type I have usually when I don't get the extra helping of hemolysis on the side, the ten and fourteen day gaps are reasonable, so its not so weird that you would try spacing it like that. This hemolytic anemia via riba induction is just way intense.
It is such a strange thing to me that before, I could have an hgb of 8 or 9, and yet take maybe 8,000 or 12,000 units ten days apart and my blood count would rise rapidly and I could easily stabilize it at about hgb 12.5 and just keep it there by dosing every couple of weeks, sometimes narrowing it to less time, sometimes throwing in an extra vial or deleting one, but still, I could keep it at the same hgb with a much more casual approach just by watching doing cbc's every two weeks or so and watching my reticulocyte count. It was such an easy anemia to manage.
Now my reticulocyte count is always on high, full force. I take more epo in a week than I used to take in months. An entire vial now contains what I used to get in a complete box of ten vials. Those old vials were 4,000 units each. Now I'm taking vials that are 40,000 units each. And even with all of that epo, it still takes weeks to see the effects (but only hours to start feeling the pain unfortunately), and once I get to where I'm going, I still don't know for certain what it will take to keep me there.
I mean, I've got some good educated guesses, and I've got great anecdotal wisdom from you and a few others and I'm hopeful my body will kind of follow suit, but still, there's a huge question mark for me on what kind of control I'm going to have on an ongoing basis over my red blood cell lines. I'll feel more comfortable I think in another three or four weeks or so when I have some more history and by then I'll hopefully have "peaked," reduced to the stable point, figured out what dosage at how often keeps me there, and stabilized. Hopefully. That's my fond hope and dream anyway. Lord knows we all need a dream...
Scratchinghead: It's hard for me to remember all those years ago when I was afraid of the syringes. I think it was back when I was a teenager and had to take allergy shots. I would sit there and stare at my leg forever and then I'd play "chicken" with my own thigh, trying to gear up to jab it in. Eventually I'd either do it or I'd end up driving to my mom's house so she could do it for me. Then later with my migraines frequently we had a bottle of nubain at the house and after a while I got tired of having to have someone drive me out to my parent's house every time I had a migraine. And when I was in that much pain sticking a syringe into my thigh just didn't seem so scary anymore relative to the pain I was in, so I think that's probably how I first really got over my fear of giving myself an injection.
Hope this finds everyone in realtively good health and spirits today.
-- Jim
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I almost fainted after reading all this needle stuff. I must be a real weenie. Sure hope they invent something else before I have to treat. Don't think I'm gonna find a girlfriend that is a nurse.
-- Jim
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I almost fainted after reading all this needle stuff. I must be a real weenie. Sure hope they invent something else before I have to treat. Don't think I'm gonna find a girlfriend that is a nurse.
thank all of you so very much. i have printed off all of your responses for absorbing all of it thru my fogged brain at short intervals if you know what i mean. :o)
i will check with my va and see if there is a hemotologist on staff to help make sense of all the blood test and see if it is possible to be on a more structered doses of the epogen.
i will also let my doc read some of the valuable info you all have given and see if it is possible to receive the test from johnson&johnson, for my own peace of mind (whats left of it ).
also whoever the needle persons were, thank you; you have given me some good ideas for future injection sites. just for fyi when i inject on my thigh i find that pinching the sight while putting the needle in helps, and by finding the loose area on my thigh during injection helps with the burning.
to all of you may you have a great holiday and (as in my case) may all the turkey you eat give all of you a wonderful peacful claming sleep as i believe we all deserve.
happy holidys all. : O )
i will check with my va and see if there is a hemotologist on staff to help make sense of all the blood test and see if it is possible to be on a more structered doses of the epogen.
i will also let my doc read some of the valuable info you all have given and see if it is possible to receive the test from johnson&johnson, for my own peace of mind (whats left of it ).
also whoever the needle persons were, thank you; you have given me some good ideas for future injection sites. just for fyi when i inject on my thigh i find that pinching the sight while putting the needle in helps, and by finding the loose area on my thigh during injection helps with the burning.
to all of you may you have a great holiday and (as in my case) may all the turkey you eat give all of you a wonderful peacful claming sleep as i believe we all deserve.
happy holidys all. : O )
Here are a few of 'needle talk' threads from the past. Check out the post from yours truly in the first and from "Grand Oak" in the second. And the third post from '05 deals with dosing issues, although as stated I found the easiest way for me to tweak dosing was to inject 40,000 units but alter the spacing between injections from 5-7 days.
And now that it's starting to come back (like a bad dream ;) ) -- at earlier points I sometimes did 14 and 10 day intervals, although the 14 day intervals were what got me into trouble. But I do now remember that 3/8" is the length used for Pegasys, so that would be my choice for Procrit as well.
http://www.medhelp.org/forums/hepatitis/messages/42485.html
http://www.medhelp.org/forums/hepatitis/messages/42580.html
http://www.medhelp.org/forums/hepatitis/messages/39465.html
And now that it's starting to come back (like a bad dream ;) ) -- at earlier points I sometimes did 14 and 10 day intervals, although the 14 day intervals were what got me into trouble. But I do now remember that 3/8" is the length used for Pegasys, so that would be my choice for Procrit as well.
http://www.medhelp.org/forums/hepatitis/messages/42485.html
http://www.medhelp.org/forums/hepatitis/messages/42580.html
http://www.medhelp.org/forums/hepatitis/messages/39465.html
Easy enough to confuse. epoetin alfa (epo) is the generic. As to the needles, the higher the gauge, the thinner the needle.
I'd check to see what I used, but the only ones left are big, long suckers for IM B12 injections.
I'd ask the pharmacist (local or online) what the guage is for insulin needles and use that for the actual injection. Then get a bigger gauge to draw up the epo. And, of course, you want a sub-q length, not the longer IM ones. As to barrel size, I think I used a 2CC, can't remember, as it afforded xtra barrel room to suck up the 1CC contents of the epo vial. Also, easier to get my hands around. As mentioned, the needles and barrels aren't all that expensive, so get xtras and maybe try a few different size needles. You will be amazed at the difference a virgin needle will make, plus all that swapping out adds color and interest to the ritual :)
-- Jim
I'd check to see what I used, but the only ones left are big, long suckers for IM B12 injections.
I'd ask the pharmacist (local or online) what the guage is for insulin needles and use that for the actual injection. Then get a bigger gauge to draw up the epo. And, of course, you want a sub-q length, not the longer IM ones. As to barrel size, I think I used a 2CC, can't remember, as it afforded xtra barrel room to suck up the 1CC contents of the epo vial. Also, easier to get my hands around. As mentioned, the needles and barrels aren't all that expensive, so get xtras and maybe try a few different size needles. You will be amazed at the difference a virgin needle will make, plus all that swapping out adds color and interest to the ritual :)
-- Jim
uggh! This new "keyboard in the bed" thing is not working out well (I broke my laptop). What I MEANT to say is that I'll always be grateful to you for warning me to pre-dose at least with the epogen I had on hand, and to up my cbc frequency faster than I normally prob would have done, and also for letting me know (along with Debnevada) that the hemolysis starts happening fast, sometimes in the second week. I'd been thinking it would be a slow process over a matter of weeks or months.
As bad as my blood count got, if I hadn't done the pre-dosing I was able to do and watched my blood count like a such a hawk early on per your suggestion I wouldn't have even KNOWN to get over to the hema and start the higher epo when I did. It wouldn't have just been transfusionville, it prob would have been "off treatment." So never think you didn't help or that your warnings fell of deaf ears because truly, you and Deb have both gotten me through a world of pain these first weeks. (Now if you guys could just get me over this frickin physical pain, geesh)
As bad as my blood count got, if I hadn't done the pre-dosing I was able to do and watched my blood count like a such a hawk early on per your suggestion I wouldn't have even KNOWN to get over to the hema and start the higher epo when I did. It wouldn't have just been transfusionville, it prob would have been "off treatment." So never think you didn't help or that your warnings fell of deaf ears because truly, you and Deb have both gotten me through a world of pain these first weeks. (Now if you guys could just get me over this frickin physical pain, geesh)
I really saw that coming back then, and tried to warn -- but to have listened to a stranger on the net would not have been a rational choice.
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Well, although I was cavalier, I wasn't THAT cavalier, LOL - I did predose with all the epo at my disposal. For which I will always be eternally greatful to for suggesting, AND I upped my cbc's from once a month to I think it was once a week the first couple of weeks then twice a week thereafter. (Used to do them twice monthly). Some "strangers on the web" seem a lot more credible than others. You seemed pretty credible.
I think what I meant by cavalier is that I thought increases in procrit would respond quickly, like I was used to. Ha! Not even... lol
However, back then my entire case was 40,000 units and they gave it to me once a month. So I gave myself all the vials I had left and they I was unfortunately out of epo. And by the second week or whenever I started dropping, I had to get the referral over to the hema, yadda yadda yadda. But in retrospect, I would have had them refer me prior to even starting therapy. Although quite frankly, given that back then I had that stupid nurse practicioner to deal with... not sure it would have happened.
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Well, although I was cavalier, I wasn't THAT cavalier, LOL - I did predose with all the epo at my disposal. For which I will always be eternally greatful to for suggesting, AND I upped my cbc's from once a month to I think it was once a week the first couple of weeks then twice a week thereafter. (Used to do them twice monthly). Some "strangers on the web" seem a lot more credible than others. You seemed pretty credible.
I think what I meant by cavalier is that I thought increases in procrit would respond quickly, like I was used to. Ha! Not even... lol
However, back then my entire case was 40,000 units and they gave it to me once a month. So I gave myself all the vials I had left and they I was unfortunately out of epo. And by the second week or whenever I started dropping, I had to get the referral over to the hema, yadda yadda yadda. But in retrospect, I would have had them refer me prior to even starting therapy. Although quite frankly, given that back then I had that stupid nurse practicioner to deal with... not sure it would have happened.
Ooops. Sorry, Mike. My bad. Kind of bizarre but yep. They are both the exact same epoetin alfa, and both name brands. Don't quite get how both companies market them at the same time. When I first started taking it, my doc wrote me out a scrip for procrit, this was several years ago, and I got epogen from the pharmacy instead so I assumed it was the generic form of the drug. Learn something new every day ;) Here's an article about it below:
http://www.medicinenet.com/epoetin_alfa/article.htm
http://www.medicinenet.com/epoetin_alfa/article.htm
Epogen = generic Procrit ??? That's the first time I ever heard that.
In the 1980s, Adamson, Eschbach and others helped lead a clinical trial at the Northwest Kidney Centers for a synthetic form of the hormone, Epogen produced by Amgen. The trial was successful; its results were published in The New England Journal of Medicine in January 1987. The study authors were Dr. Adamson, Dr. Joseph W. Eschbach, Dr. Joan C. Egrie, Dr. Michael R. Downing and Dr. Jeffrey K. Browne.
In 1989, the Food and Drug Administration approved the hormone, called Epogen, which remains in use.
EPOGEN and PROCRIT are identical at the molecular level. Ortho provided
financial support to Amgen for the development of erythropoietin as a
therapeutic. In return, they obtained licensing rights to market the
drug for all indications in the U.S. other than kidney dialysis.
In fact, fairly often hospital pharmacies only carry one of these two
products, so PROCRIT can end up being used in dialysis patients or
EPOGEN in AIDS patients. The two companies have a agreement on how to
compensate each other for such "out of market" sales.
John Philo, Protein Chemistry
Amgen Inc., Thousand Oaks, CA
In the 1980s, Adamson, Eschbach and others helped lead a clinical trial at the Northwest Kidney Centers for a synthetic form of the hormone, Epogen produced by Amgen. The trial was successful; its results were published in The New England Journal of Medicine in January 1987. The study authors were Dr. Adamson, Dr. Joseph W. Eschbach, Dr. Joan C. Egrie, Dr. Michael R. Downing and Dr. Jeffrey K. Browne.
In 1989, the Food and Drug Administration approved the hormone, called Epogen, which remains in use.
EPOGEN and PROCRIT are identical at the molecular level. Ortho provided
financial support to Amgen for the development of erythropoietin as a
therapeutic. In return, they obtained licensing rights to market the
drug for all indications in the U.S. other than kidney dialysis.
In fact, fairly often hospital pharmacies only carry one of these two
products, so PROCRIT can end up being used in dialysis patients or
EPOGEN in AIDS patients. The two companies have a agreement on how to
compensate each other for such "out of market" sales.
John Philo, Protein Chemistry
Amgen Inc., Thousand Oaks, CA
On that site, which are the smaller (thinner) needle tops? The 18 gauge or the 21 gauge? Yeah yeah, laugh it up, lol I'm girl. No smart axx answers either, or I'll come over there and punch a hole in Jenna with one of 'em ;)
Kcrandy/Xenigma - Good luck to you guys!
To all the rest of you! Have a lovely Saturday and I will talk to all you (or whine as the case may be) later ;)
To all the rest of you! Have a lovely Saturday and I will talk to all you (or whine as the case may be) later ;)
60,000 units/week now, which I accomplished by injecting 40,000 units once every five days
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Actually, I like this idea because it is so much more in tune with how I USED to manage my doses, AND it gives me added benefit of not dosing on my DAMN pegasys night, which I've got to tell you is putting me in so much pain I can barely take it.
At some point in the future I will be on point again and then I can go back to a management system where I am keeping myself at the benchmark. That will be nice. I can work with pain. I can't work with exhaustion. (well ok, nausea isn't a real work incentive either). But just not being exhausted really improves my quality of life on this tx. Of course all of the sides are rough, but when you are tired out of your mind, the other sides seem overwhelming. With my count where it is now even I am just doing scads better. Gonna run down to the clinic in a little while and get my latest and greatest blood test. Will see you guys later ;)
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Actually, I like this idea because it is so much more in tune with how I USED to manage my doses, AND it gives me added benefit of not dosing on my DAMN pegasys night, which I've got to tell you is putting me in so much pain I can barely take it.
At some point in the future I will be on point again and then I can go back to a management system where I am keeping myself at the benchmark. That will be nice. I can work with pain. I can't work with exhaustion. (well ok, nausea isn't a real work incentive either). But just not being exhausted really improves my quality of life on this tx. Of course all of the sides are rough, but when you are tired out of your mind, the other sides seem overwhelming. With my count where it is now even I am just doing scads better. Gonna run down to the clinic in a little while and get my latest and greatest blood test. Will see you guys later ;)
Ala: was way cavalier about my ability to handle the anemia when I first started taking the meds.
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I really saw that coming back then, and tried to warn -- but to have listened to a stranger on the net would not have been a rational choice.
However, I do think your hemo should have had you on 40,000 units/from the get go, and given you history, Prophylactive dosing of 40,000 units/week two weeks prior to tx (or at least concurrent with tx) would not have been unreasonable. Problem again, is that a lot of hemo's don't have much HCV tx experience.
The good news, however, is that our bodies do adjust some to lower hgb levels, as tx goes on. Just another variable to plug into the 'ole equation.
Anway, so what's the alagirl to do? 80,000 units/week does seem like a lot for someone with hgb climbing.
-- Jim
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I really saw that coming back then, and tried to warn -- but to have listened to a stranger on the net would not have been a rational choice.
However, I do think your hemo should have had you on 40,000 units/from the get go, and given you history, Prophylactive dosing of 40,000 units/week two weeks prior to tx (or at least concurrent with tx) would not have been unreasonable. Problem again, is that a lot of hemo's don't have much HCV tx experience.
The good news, however, is that our bodies do adjust some to lower hgb levels, as tx goes on. Just another variable to plug into the 'ole equation.
Anway, so what's the alagirl to do? 80,000 units/week does seem like a lot for someone with hgb climbing.
-- Jim
Good question. As mentioned, in my case I came off the epo too fast, then the hgb dropped too much and then I had to go play catch up.
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LOL yeah, NOT goin' THERE again on this tx if I can possibly help it. You know its so weird for me, because you were right, I was way cavalier about my ability to handle the anemia when I first started taking the meds. I had no idea how profound the effects of the riba hemolysis would be.
So due to that previous miscalculation on my part, I realize that I cannot count on my prior experience with how I used to respond to adjustments in my epogen. Before, I could adjust up or down, or stop procrit for a week or so and begin to see a decline. I could restart a smaller dose the following week and see a stabilization (yes, a blood cell takes 8 -10 days to form, just telling you my experience with my own crazy bod lol).
But now... I can't count on any of that. It's an entirely new roller coaster ride and I am not anywhere close to the control box. In fact, that guy apparently either quit or took a protracted lunch break and left all the cars hanging upside down at the top of one of the loops... ;)
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LOL yeah, NOT goin' THERE again on this tx if I can possibly help it. You know its so weird for me, because you were right, I was way cavalier about my ability to handle the anemia when I first started taking the meds. I had no idea how profound the effects of the riba hemolysis would be.
So due to that previous miscalculation on my part, I realize that I cannot count on my prior experience with how I used to respond to adjustments in my epogen. Before, I could adjust up or down, or stop procrit for a week or so and begin to see a decline. I could restart a smaller dose the following week and see a stabilization (yes, a blood cell takes 8 -10 days to form, just telling you my experience with my own crazy bod lol).
But now... I can't count on any of that. It's an entirely new roller coaster ride and I am not anywhere close to the control box. In fact, that guy apparently either quit or took a protracted lunch break and left all the cars hanging upside down at the top of one of the loops... ;)
X,
Def get an rx for a bunch of Luer-Loks and try some diff syringe gauges. I suppose you could practice a bit first -- screwing on/off the needle -- as well as drawing out the liquid, (using water) that you first injected into an empty vial. Of course, not suggesting you practice jabbing yourself, just getting used to the system which actually doesn't really need getting used to but one 'dry' run at least is always a good idea and these barrels and needles are cheap enough that you can test a few and discard -- so always get a bunch of xtras.
Ala,
Yeah, those are the pro's. I'm sure they can tell you how to time your dose down to a 3-hour race window :)
Def get an rx for a bunch of Luer-Loks and try some diff syringe gauges. I suppose you could practice a bit first -- screwing on/off the needle -- as well as drawing out the liquid, (using water) that you first injected into an empty vial. Of course, not suggesting you practice jabbing yourself, just getting used to the system which actually doesn't really need getting used to but one 'dry' run at least is always a good idea and these barrels and needles are cheap enough that you can test a few and discard -- so always get a bunch of xtras.
Ala,
Yeah, those are the pro's. I'm sure they can tell you how to time your dose down to a 3-hour race window :)
Part of that may be unclear so I will try and clarify plus expand based on how I eventually ended up tweaking my epo doses.
I was suggesting -- assuming that 2-4 weeks ago you were on only 40,000/wk -- that you might consider dropping to 60,000 units/week now, which I accomplished by injecting 40,000 units once every five days. Then you would monitor bi-weekly for 2-4 weeks. If after that time, the hgb is above your target, then maybe inject the 40,000 units every six days. Wait another 2-4 weeks -- if within desired range -- inject every seven days, which would bring you back to 40,000 units/week. In other words, be real gradual.
Alternatively, if after dropping to 60,000/wk (injecting 40,000 every five days), your hgb stabalized where you wanted it after 2-4 weeks -- then you have to decide whether or not you want to test the waters by injecting every six and eventually every seven days. You might want to, or you might decide to leave well enough alone at 60,000 units/wk.
During my last trimester of tx, I was injecting the 40,000 units somewhere between every five and seven days, depending on a combination of how I felt, my chart of hgb levels against epo dose (going back 2-4 weeks) and a Ouija board :) That said, probably would have done just as well if I just stayed at 60,000/wk, but I'm a guy who likes to tinker :)
-- Jim
I was suggesting -- assuming that 2-4 weeks ago you were on only 40,000/wk -- that you might consider dropping to 60,000 units/week now, which I accomplished by injecting 40,000 units once every five days. Then you would monitor bi-weekly for 2-4 weeks. If after that time, the hgb is above your target, then maybe inject the 40,000 units every six days. Wait another 2-4 weeks -- if within desired range -- inject every seven days, which would bring you back to 40,000 units/week. In other words, be real gradual.
Alternatively, if after dropping to 60,000/wk (injecting 40,000 every five days), your hgb stabalized where you wanted it after 2-4 weeks -- then you have to decide whether or not you want to test the waters by injecting every six and eventually every seven days. You might want to, or you might decide to leave well enough alone at 60,000 units/wk.
During my last trimester of tx, I was injecting the 40,000 units somewhere between every five and seven days, depending on a combination of how I felt, my chart of hgb levels against epo dose (going back 2-4 weeks) and a Ouija board :) That said, probably would have done just as well if I just stayed at 60,000/wk, but I'm a guy who likes to tinker :)
-- Jim
We could always call some of those guys on the Tour de France and ask if they have any special EPO administration tips...
Always some extra air, i just push the plunger a bit to get some of it out but I have injected some too. (Or I loose my 40,000 units) No large bubbles though just some like frothy bubbles at the top by the needle.
Gonna see if I can get the B-D Luer-Lok system as well.
Gonna see if I can get the B-D Luer-Lok system as well.
Here's a link to the B-D Luer Lok system. The other advantage is that because it screws on, less chance for drips. Like the name suggests, it really "locks" on, sort of.
http://www.homecaredelivered.com/catalog/prod2162.php
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Good question. As mentioned, in my case I came off the epo too fast, then the hgb dropped too much and then I had to go play catch up. Again, it's that d*mn 2-4 week delay that makes things difficult because it can lull you into a false sense of complacency that everything is going fine and then WHAMMO you're on the floor again :)
As to others here, I do remember several others -- GoofyDad comes to mind (I think) -- where they backed off the epo too fast (or maybe he started too slow) and also ended up in 'catch-up' mode.
In your case, you're on 80,000 wk with hgb 11 and climbing. You'd have to sit down with pen and paper and work backwards, but my guess is that the hgb 11 may be more the result of 40,000 wk (2-4 weeks ago) than the 80,000 increase. And if so, then you might reasonably cut down to 60,000 wk with bi-weekly monitoring and back to maybe 40,0000, 2-4 weeks after that if your hgb is still in the desired range. But of course, I'm not a hematologist, and just basing this on my personal experience, lay observations and deductive logic which may or may not be pertinent. On the other hand, you have what appears to be a good hematolgist to run all of this by. Hope this helps.
All the best,
-- Jim
http://www.homecaredelivered.com/catalog/prod2162.php
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Good question. As mentioned, in my case I came off the epo too fast, then the hgb dropped too much and then I had to go play catch up. Again, it's that d*mn 2-4 week delay that makes things difficult because it can lull you into a false sense of complacency that everything is going fine and then WHAMMO you're on the floor again :)
As to others here, I do remember several others -- GoofyDad comes to mind (I think) -- where they backed off the epo too fast (or maybe he started too slow) and also ended up in 'catch-up' mode.
In your case, you're on 80,000 wk with hgb 11 and climbing. You'd have to sit down with pen and paper and work backwards, but my guess is that the hgb 11 may be more the result of 40,000 wk (2-4 weeks ago) than the 80,000 increase. And if so, then you might reasonably cut down to 60,000 wk with bi-weekly monitoring and back to maybe 40,0000, 2-4 weeks after that if your hgb is still in the desired range. But of course, I'm not a hematologist, and just basing this on my personal experience, lay observations and deductive logic which may or may not be pertinent. On the other hand, you have what appears to be a good hematolgist to run all of this by. Hope this helps.
All the best,
-- Jim
The optimal solution I've found is to use the B-D Luer-Lok system. You basically draw the epo with one needle, and then switch to a new needle before the injection.
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I didn't even know you could get small bd needle tops like that! OK. Cool, I am going to ask for them from my pharmacy. So xenigma, IF you can get those, I'd do that instead. If you can't, I think puncturing the grey seal once with the tiny needle still works better than using the big needle.
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I didn't even know you could get small bd needle tops like that! OK. Cool, I am going to ask for them from my pharmacy. So xenigma, IF you can get those, I'd do that instead. If you can't, I think puncturing the grey seal once with the tiny needle still works better than using the big needle.
Yes, I do believe that puncturing the grey top of the Procrit bottle dulls the needle. Takes more "umph" to slide it in the fat of my thigh. The peg in my tummy is smooth and I can tell the difference.
Thanks for your input...
BTW, my Hemoglobin was at 10.4 when we started the Procrit.
It takes a while to work and I felt like ****. Probably should have started sooner.
Thanks for your input...
BTW, my Hemoglobin was at 10.4 when we started the Procrit.
It takes a while to work and I felt like ****. Probably should have started sooner.
I don't think I ever entirely answered your question, looking back. The extra air is ok. Don't worry about it. It even gets in actual IV's sometimes, which used to freak me when I'd be in the hospital, and the nurses never even worried about that. (I know, cause I pushed the call button a few times telling them they were going to give me an embolism. They laughed at me. Hard. lol) So don't worry about it with your procrit. Just do a small squirt out the top to get rid of the small amount and don't sweat the rest, just give the sub q injection.
Thanks for your comments & help. I always do bevel up on both Peg & Procrit injections but the Peg I inject in my tummy (whichI have no pain or bruising per say- just some red areas) The Procrit I do in the thigh and Oh does that burn!! Little round black and blue's too! I do wipe the needles with an alcohol pad to get any drips off before I inject either med. I also pull the plunger back to make sure I'm not in a vein. I guess I am doing it all correctly, I think just shooting in my thigh fat is more sensitive than that little roll of flab under my belly button area hehe ;-)
I used to hate that roll, but now I wish it were larger LMAO
Thanks again...
enigma
I used to hate that roll, but now I wish it were larger LMAO
Thanks again...
enigma
Jim - I think we are advising the same thing here - that at 14.9 it's time probably to talk to the doc about backing off the dose amount, or going more days in between or both. Given the AMOUNT of time it takes the body to respond though, do you think its smart to stop entirely? I hate for KC to stop entirely then get into another loop where its way too low again and takes forever to catch up...
I think I'm asking you this for me too, because with mine hitting almost 11 and me being on the increased dose I suspect it may hit too high and then I'll be in the position of backing off to try to regulate it but I wasn't planning on cutting it all the way off. I know I've got a bit of a different situation from KC though.
My other question is, how many of the normal people out there (you know, not the weirdos like me lol) have anemia early on, take the procrit, get their count back up and then have it pretty much resolve and don't have to go back on the procrit? Because I think I have seen some evidence of that on here with some folks (lucky sob's btw lol). I know that didn't happen in your case, Jim, but what's been your experience with it in terms of watching other folks?
I think I'm asking you this for me too, because with mine hitting almost 11 and me being on the increased dose I suspect it may hit too high and then I'll be in the position of backing off to try to regulate it but I wasn't planning on cutting it all the way off. I know I've got a bit of a different situation from KC though.
My other question is, how many of the normal people out there (you know, not the weirdos like me lol) have anemia early on, take the procrit, get their count back up and then have it pretty much resolve and don't have to go back on the procrit? Because I think I have seen some evidence of that on here with some folks (lucky sob's btw lol). I know that didn't happen in your case, Jim, but what's been your experience with it in terms of watching other folks?
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