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.
Can you please explain how you feel tapering off of interferon the way you're planning to after 72 weeks of treatment will help to avoid relapse? I'm interested in your thinking behind this one. I understand it from the perspective of easing your body off the drugs (not saying that I agree or disagree with that, just that I understand it on some level), just wondering how you see that tapering the interferon helps with avoiding relapse. Why not just go full strength and go extra shots? Why taper at all then?
Good question and I was thinking about it as well. This question was presented to HR and he was all for it. He said tapering would give the bodies immune sys a chance to start working on its own. The immune sys is use to all the help from the peg. This tapering should take place after all regular shots have been taken, so in reality you are getting a few extra shots but in tapered doses. I don't think there have been studies on this but the theory sure makes sense.
I will be stopping TX soon and will also use the tapering off method.
Pegasys is also available in a in vial.
One of my syringes was replaced by a 180 'single use vial', and disposable syringe. This might be a better option than numerous partial syringe usage, imo.
Ask your pharmacist if she can order vials for you.
I would recommend a new syringe for each injection so as not to contaminate the vial.
I don’t the pharmacy for their concern; there’s no evidence that ‘tapering’ off interferon benefits the patient in any way. This seems to be the flavor of the month for HCV treatment. Show us some published, peer reviewed documents, and then we’re beginning to practice evidence based medicine. Anything less than that is nonsense.
The tapering is more for the Riba than the interferon. When you get off of the drugs your body will practically scream out for more Riba but not the shots, at least that was my short experience. good luck
Tapering as a concept was intoduced to me as a concept by Hepatitis Researcher within this forum.
Roughly speaking he postulated that the immune system if gradually returned to normal would better identify any stray virons floating around at the end of treatment.
There is, as far as I am aware, no supporting evidence.
Hepatitis Researcher did for a time achieve guru status here and his every utterance enshrined as gospel.
He was clearly very erudite hoewver my own experience with the Fibroscan which was a HR cause celebre makes me a tad wary.
For all those considering tapering down on interferon I would say 'Have you actually been given any evidence?'
Additionally I am aware that tampering with pre-packed interferon and messing with dose can have dire side affects if the IFN is exposed to air and reused.
Bill and HCA, you both make very good points, hard to debate without any medical studies.
Somehow I think HR would be the first to admit this. Although, more than likely he has seen evidence to lead him to his opinion. But none the less it still is an opinion, not backed by medical studies.
Thing is, a little more time on very reduced tapering dose ifn, probably won't hurt, and there is a slim chance it could help. I did not tapper, but did have a dose reduction the last 2 shots, and it did 'feel' quite good to be reduced.
Please explain about the fibroscan, (pm me if you don't want it public) as I have had them done and very interested in any problems you might have encountered.
I asked my doctor about tappering off vs. stopping a while back. He told me straight out there is no need to tapper off.
He is also a leading doctor in the field named Dr. Rajender Reddy. He is the Director of Hepatology at University of Pennsylvania. I did not mention these articles in particular but he knows that I am up on things.
I will ask him again at my next appointment as it will be week 48 and EOT. I would also agree that the argument made is thought provoking. I am assuming that since they tend to determine the treatment outcome by EVR these days it may not be relevant. I have been UND since week 4. My guess is that any little virons in my body that might have been still lingering are long gone.
I will look to see if there is any newer studies thhat argue this point one way or the other.
I am not advocating one method over the other. Just mentioning my doctor said no to tapering.
"did for a time achieve guru status here and his every utterance enshrined as gospel."
Does seem to happen from time to time to time, regardless of the supporting evidence.
After 80+ weeks of interferon, imo, it makes no sense that the tapering off method will have any bearing on avoidance of relapse. With that amount of time on interferon either the immune system has done what it was supposed to do or it hasn't. At the very best, tapering may make you feel better because the immune system is gradually adjusting.
When starting treatment I couldn't allow my immune system to gradually become accustomed to the interferon so I won't be tapering. I'll go out with a bang just like I came in.
I've been contemplating this problem too of dividing doses and trying to find the most sterile technique to give myself 270 mcg of INF without contaminating the half dose or throwing it away altogether. The clinic suggestion is to draw off 90 mcg with a tuberculin syringe from one prefilled syringe, recap it the original one and shoot with the reloaded syringe. The other option was to pull back the plunger on one prefilled, add the extra 90 and give it in one shot. Too putsy and too hard to stabilize the plunger to shoot because it is so far out of the syringe and it goes in with jerky motions. I hate the thought of throwing out a half dose, but I don't want to run into problems with sepsis either. I willing to listen to all options to simplifiy this.
Copy: I like the theory and see no harm in trying it.
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.
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 too much of a cynic to place my faith in someone who posts on a Web site under a pen-name.
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.
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.
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!!
I can't think of any opinion I'd rather have than HR's. If I remember correctly, he discussed the whole idea of tapering with St. George who had just relapsed after 72 weeks. He didn't tell anybody to do it but he thought the idea could have some merit.
My husband was not expected to ever be well enough to treat again and was basically told to go home and wait until he was bad enough for the transplant list. (this was at a major teaching hospital that does lots of trials) HR's "opinion" on safe and possibly helpful supplements put my husband back in the game again . I wish HR would come back and share more of his "opinions" because Joe has been treating with Alinia in the mix since the first of last June and as of last month, he is still detectable. My only comfort at this point is that if he has to stop treatment, we will go back to HR's supplements which helped so much.
My humble opinion is that HR's opinion is very valuable. I know he isn't God but I personally consider him a genius and I'll be forever grateful that he shared his ideas with us.
I can not really comment either way about the tapering off the interferon or the ribavirin either separately or both together as it is an individual choice to do so. “Most” who did not go this route went on and have indeed achieved SVR, but at what price physically and then there are also many who have not, only to look at another 48 weeks or 72 because of it. I do agree with Jim on one point and that is if you were a slow responder and are going by their doctors treatment plan it may be advantageous to them, just as you did and to bring up and discuss this issue with him or her. It is not for everyone, for there are those who have and have not had any autoimmune problems from tapering that I’m aware of and can not do any more harm to a now toxic system. Unless someone who has tapered off the interferon and or ribavirin and has had the many problems as those here, they are just going by their own silos thinking. Common sense has to play a part in ones treatment plan instead of the heard mentally such has played out here on this site about this topic and it does not matter if there is “NO” present research data. Then again, the medical community, insurance companies and big Parma have no vested interest in the patients out come only that they were svr at the 6 month mark and are considered “CURED”, not! Until that changes it will be status Quo or until there is some well pumped “new” drug such as on the horizon but even that has interferon and ribavirin attached to it but everyone will buy into it just the same. Some many get to this point but very seldom go over the edge, for it is a good whipping post to get their frustrations out on because of the could have, should have but didn’t follow through only to second guess themselves if treatment should fail. Good Luck!
BTW, HR was one of the greatest researchers to visit this site, but I am sure there are thos who walk upon the water is some eyes, jmo.
thanks for all you remarks....my plan was to draw my last vial into 6 syringe...2 would have 1/4 dose, 4 would have one 1/8...
I had no idea this would be a sterility risk.
As far as HR's reasoning goes, when I taught anatomy...admittedly long ago, there was evidence of glands not coming on line right away when a substance replaced by a drug was withdrawn. Chief amongst these that I knew of were the thyroid and pituitary, which rarely begin to ever function again once they have become dependant on a hormone.
The spleen is not like that, but according to HR it is slow to come back on line.
HR worked in Hapatitis research. He saw thousands of labs, and invented the machine that detects the virus today.
So if anyone has observed how soon the spleen may return to normal, it would be him.
Please read the thread I gave above, where he explains his thinking.
I think one might think of this like going from a hard cast, and a crutch, to an ace bandage and a cane, to finally going to just a supportive shoe as a broken foot is healing...you need some support in the beginning....but eventually will return to full normal strength.
The immune system will have to return to making millions of it's own interferon molecules to fight not just HCV lingerers, but all the other viruses we are exposed to all the time...but because it has not been required to produce this INF on it's own for a year and a half....it just doesn't fire up to full strength all at once....
actually, we are lucky it returns to function at all. Most glands don't, once you need insulin, or thyroid, you are stuck needing it for life...
You of all people should know that by drawing for one sterile syringe into another the risk factor is very low or none existent. It is nothing more than drawing from a vial. The last shot you were going to use is the “vial” with a rubber cap just as a vial itself. The only thing that is different is that the rubber cap is thicker. So, if you buy 12 syringes and you only need 6 syringes to complete the taper it leaves you with 6 needles attachments to draw from your last shot. If you were thinking a head, as you were, (its all in the planning mb) you could have saved the caps from previous shots and sterilized them and reused them to replace the caps after each additional draw. The interferon itself would not be contaminated because after each draw with a new needle, a new/reused/sterile cap would replace the now punctured old cap and the refrigeration of all would keep the sterility risk very very low if any. Side note, after you have drawn from the syringe make sure the syringe chamber has no air left in it. Meaning push the plunger until the interferon fills the tip before capping.
The Spleen has been traumatized by the onslaught of the ribavirin over the many months of high doses placed upon it and will come back on its own once the ribavirin is finally filtered out of our systems and as you know it could take up to six months or longer to do so. The ribavirin is entrapped in the red blood cells for the life of the cell because of the enzymes can not break it down and when the spleen breaks the red blood cells down the ribavirin is then released back into the body and keeps it traumatized for however long it takes to filter out of the body either through the spleen or the kidneys and is why it has (the ribavirin) a long half life and a natural taper built in.
"Hepatitis Researcher did for a time achieve guru status here and his every utterance enshrined as gospel."
Good to see that HR no longer holds guru status, that criticism of his opinions is allowed. When I was fairly new to MH, I saw a member who dared to express her critical opinion of HR be so bullied by the other members so she left MH. I was too new to dare to intervene. I do hope MH of today has the capability of harboring people's differing views.
Good thread. I have been planning to taper and still plan to. I didn't und until week 28 and will tx 60 weeks beyond und to week 88. If I haven't killed the dragon by then, I don't think tapering will make any difference in my SVR chances.
I do, however, think that tapering might reduce the chances of long-term autoimmune problems that others on the forum have experienced. Any hard evidence that tapering will help? Very little. But who's going to fund studies on that?
My doctor is dubious but has given the OK to tapering. I feel that risk of tapering is lower than the risk of not tapering. But that is just me, everyone has to make their own decision.
"I do, however, think that tapering might reduce the chances of long-term autoimmune problems that others on the forum have experienced. Any hard evidence that tapering will help? Very little. But who's going to fund studies on that?"
I hope you don't mind me asking ... if interferon contributes to the emergence of autoimmune problems, how does tapering interferon prevent them, in your opinion? I would have thought that the sooner interferon is removed, the lower the risk of autoimmune issues rearing their heads. Interested where you're coming from there.
I'm coming from very thin ice! I have not done all my research yet, will look more into it in June when I have more time. I've read HR's comments on tapering, I've shown them to my doctor and she agreed with the logic, but of course wants hard evidence.
I think the shock of suddenly stopping the interferon has the potential of messing up the body's systems as it tries to readjust. I also think there is very little downside to tapering, so in weighing the risks of tapering or not tapering, tapering seems less risky.
I wonder sometimes too about the shock of suddenly stopping something as potent as interferon. I happen to agree, little downside to tapering. If I had to do it again (and here's hoping I don't!) I think I might taper just to allow my body to adjust more than anything else. Still wonder if the depression I went through post tx was partly from an abrupt stop of all meds. This discussion has made me all the more curious about the pharmacokinetics of interferon, if that's the right way of putting it.
Thanks for the reply, appreciated. Good luck when the time comes!
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