Aa
tapering Interferon-end of treatment
My pharmacist just called today because she is concerned about my request for 6 syringes.
I explained first that I was coming off of my pegasus with the tapering off method to avoid relaspe and allow the spleen time to come back on line...she was fine with that...
but then called back saying look, we aren't even allowed to mix this drug under a sterile hood...so I'm concerned you dividing one peg syringe into several other containers will open you up to possible contamination or infection.
Ideas here? I could throw out the extra...but that's going to get spendy when I get down to needing 1/8////
could ask for interfergen...not very familiar with it's use..
chances are either way INS may not approve....she says these are manufacturer standards...
I trust my pharmacist, but is this just the manufacturers way of getting more $$$$
my method for dealing with the 3/4 reduction was to inject 3.4, pull the needle out of my skin, then remove quickly the needle, then and ONLY then, to back the syringe up a smidge, reattach the plug and put back in fridge promptly.
I feel I was very careful in removing the needle, so that no contamination from blood product could have backed up into the syringe....Also I DO NOT try to pull some blood into the syringe like they say to....because I have a very LARGE supply of FAT on my thighs I am not worried at all about hitting a big vein in that mass...
so I think I'm ok so far....but I cannot see how I can get down to 1/4 or 1/8 dose with this method...I need a more accurate sysringe with more delineated meeasurements.
I'm open to any ideas, but hoping to avoid buying 2 more boxes of interferon to complete this process.
mb
I explained first that I was coming off of my pegasus with the tapering off method to avoid relaspe and allow the spleen time to come back on line...she was fine with that...
but then called back saying look, we aren't even allowed to mix this drug under a sterile hood...so I'm concerned you dividing one peg syringe into several other containers will open you up to possible contamination or infection.
Ideas here? I could throw out the extra...but that's going to get spendy when I get down to needing 1/8////
could ask for interfergen...not very familiar with it's use..
chances are either way INS may not approve....she says these are manufacturer standards...
I trust my pharmacist, but is this just the manufacturers way of getting more $$$$
my method for dealing with the 3/4 reduction was to inject 3.4, pull the needle out of my skin, then remove quickly the needle, then and ONLY then, to back the syringe up a smidge, reattach the plug and put back in fridge promptly.
I feel I was very careful in removing the needle, so that no contamination from blood product could have backed up into the syringe....Also I DO NOT try to pull some blood into the syringe like they say to....because I have a very LARGE supply of FAT on my thighs I am not worried at all about hitting a big vein in that mass...
so I think I'm ok so far....but I cannot see how I can get down to 1/4 or 1/8 dose with this method...I need a more accurate sysringe with more delineated meeasurements.
I'm open to any ideas, but hoping to avoid buying 2 more boxes of interferon to complete this process.
mb
I really wanted to taper off as well, as I thought the concept was sound and made sense... I only had one syringe left and I couldn't come up with a suitable plan of how to precisely measure out the meds and I could not solve the problem of additional sterile needles required. It all seemed too hard at that late stage of the game and in the end I ended up just going full strength on the extra shot and extending my riba by a week as well, giving me a total of 49 weeks.
To be honest, I had had enough and now I realize that I really couldn't have handled another month of meds and treatment brain. In retrospect I wish I had planned in advance to do the taper system and had it organized well before I lost my brain to the meds and making decisions became so hard. Today is my first day of no meds and I am grateful for it. I was over it.
Anyway, merryBe, which ever way you decide to go, all the best to you! Wishing you SVR!!
Epi x
To be honest, I had had enough and now I realize that I really couldn't have handled another month of meds and treatment brain. In retrospect I wish I had planned in advance to do the taper system and had it organized well before I lost my brain to the meds and making decisions became so hard. Today is my first day of no meds and I am grateful for it. I was over it.
Anyway, merryBe, which ever way you decide to go, all the best to you! Wishing you SVR!!
Epi x
Not only unproven, but the cost burden to society needs to be analyzed as well. The additional injections required do cost money; and clinicians as well as insurance companies are constantly trying to manage these outlays. I’m not certain simply liking a certain treatment protocol is sufficient.
Bill
Bill
I'm too much of a cynic to place my faith in someone who posts on a Web site under a pen-name.
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In defense of HR, many of us do know who he is, and I'm pretty sure the consensus would be that his credentials are impressive.
That said, my understanding is that he's primarily a Hepatitis B researcher and relatively new to HCV and does not have a large, clinical practice to draw from.
The other thing is that a researcher can be wrong 99 out of 100 times and still win the Nobel Prize for an earth shaking discovery for the one-time he or she is correct. A good clinician on the other hand probably will never get close to a Nobel Prize but nor can they afford to be be wrong 99 out of 100 times because their patients would be too much at risk.
Not saying HR is right or wrong here, just that tapering is only an unproven theory at this point.
-- Jim
---------------
In defense of HR, many of us do know who he is, and I'm pretty sure the consensus would be that his credentials are impressive.
That said, my understanding is that he's primarily a Hepatitis B researcher and relatively new to HCV and does not have a large, clinical practice to draw from.
The other thing is that a researcher can be wrong 99 out of 100 times and still win the Nobel Prize for an earth shaking discovery for the one-time he or she is correct. A good clinician on the other hand probably will never get close to a Nobel Prize but nor can they afford to be be wrong 99 out of 100 times because their patients would be too much at risk.
Not saying HR is right or wrong here, just that tapering is only an unproven theory at this point.
-- Jim
I think the ultimate point is that you've got nothing to go on here but the comments of one anonymous researcher on a Web discussion board plus a single study.
I'm sure in the worlds of cancer treatments and HIV you have people pushing the envelope all the time and trying things. I don't know whether they ultimately advance science. I would guess in some cases they have, but in part because the medical establishment in those areas has bought into the alternative efforts.
It's pretty clear in this case that this approach amounts to nothing more than message-board rumors and won't have any validity in terms of advancing the science of HCV treatment. Whether an individual tapers and then achieves SVR doesn't mean anything. There is no critical mass of patients doing this. No treatment centers endorsing it. It's just a rumor.
I'm too much of a cynic to place my faith in someone who posts on a Web site under a pen-name. But that's just me. Who knows in the long run whether my attitude will be successful for me. It's just the cautious way I weigh information.
I'm sure in the worlds of cancer treatments and HIV you have people pushing the envelope all the time and trying things. I don't know whether they ultimately advance science. I would guess in some cases they have, but in part because the medical establishment in those areas has bought into the alternative efforts.
It's pretty clear in this case that this approach amounts to nothing more than message-board rumors and won't have any validity in terms of advancing the science of HCV treatment. Whether an individual tapers and then achieves SVR doesn't mean anything. There is no critical mass of patients doing this. No treatment centers endorsing it. It's just a rumor.
I'm too much of a cynic to place my faith in someone who posts on a Web site under a pen-name. But that's just me. Who knows in the long run whether my attitude will be successful for me. It's just the cautious way I weigh information.
Copy: I like the theory and see no harm in trying it.
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But what if in fact a gradual tapering of interferon actually did the opposite of what HR said it was supposed to do? In other words, what if a more abrupt changeover from an interferon-fueled immune system to one's natural immune system actually produced more SVRs because the immune system was in effect pushed to act on its own?
I should say that I doubt if the above is true but something like that did go through my mind when it came time to decide whether to taper or stop the drugs all at once. Given the fact that I was RVR with around an 80% chance of SVR, my reasoning was why monkey around with a proven and studies formula, in other words I'll take my 8 out of 10 chance and stop all at once per protocol. Now, on the other hand, had I been a slower responder, my reasoning might have been something like -- well, my odds aren't so hot anyway, so maybe I'll try something unproven and hopefully it might make some difference.
-- Jim
---------
But what if in fact a gradual tapering of interferon actually did the opposite of what HR said it was supposed to do? In other words, what if a more abrupt changeover from an interferon-fueled immune system to one's natural immune system actually produced more SVRs because the immune system was in effect pushed to act on its own?
I should say that I doubt if the above is true but something like that did go through my mind when it came time to decide whether to taper or stop the drugs all at once. Given the fact that I was RVR with around an 80% chance of SVR, my reasoning was why monkey around with a proven and studies formula, in other words I'll take my 8 out of 10 chance and stop all at once per protocol. Now, on the other hand, had I been a slower responder, my reasoning might have been something like -- well, my odds aren't so hot anyway, so maybe I'll try something unproven and hopefully it might make some difference.
-- Jim
If you do your full tx, every dose then taper off using additional meds what harm could come from it. NONE. I like the theory and see no harm in trying it.
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