Aa
Tapering off the Interferon and Ribavirin at the EOT?
There seems to be a renewed interest in the Tapering off the Interferon and Ribavirin as some are getting closer to the EOT or are in the planing stages as to what to do. Most are aware that being on these meds for so long that the body had become adapted to the higher than normal levels of the interferon in the body and are concerned about when treatment is stopped what will be the lasting effects if any, after stopping abruptly. Also what will be the effects of the reversal or abrupt stoppage of the Ribavirin.
This has been discussed many times before with a lot of pro's and con's as to it's validity, of this unspoken controversial option. I think it is worth revisiting the subject again as more people are aware of the personal options to them in how to deal with the aftermath of treatment. "To me understanding this process one needs to understand the process of the meds in the body at the beginning of treatment to see the possible benefits at the end of treatment." This thread should be a good base builder for those looking for the best course of action knowing what they have been through personally while on treatment and a furture base for those looking for such information.
jasper
1. What would be the best way to stop the Interferon?
2. What would be the best way to stop the Ribavirin?
3. Taper both together?
4. taper just the INterferon?
This has been discussed many times before with a lot of pro's and con's as to it's validity, of this unspoken controversial option. I think it is worth revisiting the subject again as more people are aware of the personal options to them in how to deal with the aftermath of treatment. "To me understanding this process one needs to understand the process of the meds in the body at the beginning of treatment to see the possible benefits at the end of treatment." This thread should be a good base builder for those looking for the best course of action knowing what they have been through personally while on treatment and a furture base for those looking for such information.
jasper
1. What would be the best way to stop the Interferon?
2. What would be the best way to stop the Ribavirin?
3. Taper both together?
4. taper just the INterferon?
So good to hear from you.
Must run, sorry.
Must run, sorry.
Jasper, what do you base your statement on, that a taper is two injections worth?
As for the window of opportunity for the virus to resurface ... I'm not buying that as an argument for tapering. I don't want to promote FEAR as a reasonable argument for tapering when it's not based on any sound evidence that tapering has any impact on SVR. What week we went UND, whether this is our first round of treatment, what genotype we are, what our race is .. our weight...etc. etc.. okay. But on the basis that there just might be virons still floating around? That's based on fear and nothing sound.
Sometimes fear is a valid reason for that individual but I don't see that as valid as a reason to promote tapering across the board. I know a number of people have decided to take the extra 4 shots they have just to cement the deal. That's a personal decision and I totally understand that. I might have decided the same myself. That's different. That's a personal decision we all make, the same as any number of other treatment decisions we make as we go along. If I'd gone 72 weeks, had a liver transplant prior ... I think I just might go for a few extra injections myself to cement the deal! (Yo homie .. you know who I mean.)
How much is enough, after all? At some point you DO have to stop these bloody meds and then we all hold our breath so to speak and wait for our results and hope it worked.
All courses of drug therapy have a set time based on studies that have occurred. To continue taking antibiotics for a longer period than recommended simply because you're afraid that there might still be bugs left that the drugs didn't get but not based on any firm evidence is risky when it comes to any drug therapy. And when it comes to interferon and ribavirin, I think the risk of taking these meds LONGER than necessary is also a significant risk. They do nasty things to our bodies and the longer we take them, the higher the risk. So why take them longer based only on fear and not based on any studies or science? That HAS to be weighed out in the balance here.
Talking depression in particular... after going through the post-treatment side effect of depression but not while on treatment .. I would rather that people simply be aware that this can happen as a result of stopping treatment and be prepared to address it .... the same as we're aware that depression can happen as a result of being ON the treatment and we're prepared to address that as well. Maybe tapering will end up being the way to go to avoid post-treatment side effects. Remains to be seen.
I simply wish someone would pay more attention to what the impacts are on people post-treatment from having months and months of interferon and ribavirin in the body and then suddenly not anymore. I know my doc tells me not to change my eye prescription until 6 months post treatment, we're monitoring my thryoid to see what issues remain post treatment, etc. etc.
All I know .. is I'm glad to be off the bloody meds and I'm hoping that newer regimens are kinder to all of us.
Trish
As for the window of opportunity for the virus to resurface ... I'm not buying that as an argument for tapering. I don't want to promote FEAR as a reasonable argument for tapering when it's not based on any sound evidence that tapering has any impact on SVR. What week we went UND, whether this is our first round of treatment, what genotype we are, what our race is .. our weight...etc. etc.. okay. But on the basis that there just might be virons still floating around? That's based on fear and nothing sound.
Sometimes fear is a valid reason for that individual but I don't see that as valid as a reason to promote tapering across the board. I know a number of people have decided to take the extra 4 shots they have just to cement the deal. That's a personal decision and I totally understand that. I might have decided the same myself. That's different. That's a personal decision we all make, the same as any number of other treatment decisions we make as we go along. If I'd gone 72 weeks, had a liver transplant prior ... I think I just might go for a few extra injections myself to cement the deal! (Yo homie .. you know who I mean.)
How much is enough, after all? At some point you DO have to stop these bloody meds and then we all hold our breath so to speak and wait for our results and hope it worked.
All courses of drug therapy have a set time based on studies that have occurred. To continue taking antibiotics for a longer period than recommended simply because you're afraid that there might still be bugs left that the drugs didn't get but not based on any firm evidence is risky when it comes to any drug therapy. And when it comes to interferon and ribavirin, I think the risk of taking these meds LONGER than necessary is also a significant risk. They do nasty things to our bodies and the longer we take them, the higher the risk. So why take them longer based only on fear and not based on any studies or science? That HAS to be weighed out in the balance here.
Talking depression in particular... after going through the post-treatment side effect of depression but not while on treatment .. I would rather that people simply be aware that this can happen as a result of stopping treatment and be prepared to address it .... the same as we're aware that depression can happen as a result of being ON the treatment and we're prepared to address that as well. Maybe tapering will end up being the way to go to avoid post-treatment side effects. Remains to be seen.
I simply wish someone would pay more attention to what the impacts are on people post-treatment from having months and months of interferon and ribavirin in the body and then suddenly not anymore. I know my doc tells me not to change my eye prescription until 6 months post treatment, we're monitoring my thryoid to see what issues remain post treatment, etc. etc.
All I know .. is I'm glad to be off the bloody meds and I'm hoping that newer regimens are kinder to all of us.
Trish
I would like to say a “Word of Caution” here and it has been sounded quite often. This taper discussion (because I had posted this thread) is just that, a discussion in how one might taper off the interferon (for which I did) at the EOT. “It would be advised to at least discuss this with your doctor and not act upon this yourself without doing the investigative research of (drug information inserts, previous post, and all the aspects of the meds being used”. Some have shown a great interest in the taper process but it is not for the faint of heart and lack of understanding of the mechanics of it. I do not see any risk in the taper myself because after going 48 weeks of straight up 180 interferon, two more shots in a declining scale is not going to hurt any less UNLESS there are other medical complications, and that is up to individual judgment. That being said,
Epi,
There are several ways to complete the step down, the optimal one is to have enough interferon left over to do so, which many do not have at their disposal. I did have 4 shots left at the end to complete the taper but there is a way to be creative. I also was taking Procrit and had the extra clean needles to aid me in the process. If you have two prefilled vials left, they also come with a rubber tips just as the rubber insulator on the procrit, get my drift. Empty prefills are just as good and can be sterilized and instruction can be found on google. I don’t think you can re-infect yourself at this stage if undetected. The only draw back is the needle point may be a little dull upon reuse.
Eric,
You bring up a great point in your post and that being,
”They show a dramatic drop starting at 9 days. It is not a linear drop”.
This is the window of opportunity for the virus even in an undetected state to resurface. It would be interesting to see data of how many slow responders relapsed after the end of treatment.
jasper
Epi,
There are several ways to complete the step down, the optimal one is to have enough interferon left over to do so, which many do not have at their disposal. I did have 4 shots left at the end to complete the taper but there is a way to be creative. I also was taking Procrit and had the extra clean needles to aid me in the process. If you have two prefilled vials left, they also come with a rubber tips just as the rubber insulator on the procrit, get my drift. Empty prefills are just as good and can be sterilized and instruction can be found on google. I don’t think you can re-infect yourself at this stage if undetected. The only draw back is the needle point may be a little dull upon reuse.
Eric,
You bring up a great point in your post and that being,
”They show a dramatic drop starting at 9 days. It is not a linear drop”.
This is the window of opportunity for the virus even in an undetected state to resurface. It would be interesting to see data of how many slow responders relapsed after the end of treatment.
jasper
Well I have a couple of questions here.
"The Taper itself is no more that TWO additional shots spread out over 4 to 8 weeks depending on what scale one uses"
1. Could you please explain the mechanics of that? Are you saying we use half of one shot (vial or chamber), then reuse a quarter of what's left in syringe next time and so on (following the step down protocol)?
2. How does this work if one using the prefilled syringes? Do we reuse the same needle?! My prefills don't come with spare needles!
I am asking because I will have one extra shot left at the end and I could probably get another shot from the clinic and therefore, should I decide to do it, tapering would be a pretty easy option for me.
Thanks!
Epi :)
"The Taper itself is no more that TWO additional shots spread out over 4 to 8 weeks depending on what scale one uses"
1. Could you please explain the mechanics of that? Are you saying we use half of one shot (vial or chamber), then reuse a quarter of what's left in syringe next time and so on (following the step down protocol)?
2. How does this work if one using the prefilled syringes? Do we reuse the same needle?! My prefills don't come with spare needles!
I am asking because I will have one extra shot left at the end and I could probably get another shot from the clinic and therefore, should I decide to do it, tapering would be a pretty easy option for me.
Thanks!
Epi :)
I don't think the half life of interferon is 3 weeks. I didn't see Dr D's post, but take a look at the published graphs of Pegasys and Peg Intron. They show a dramatic drop starting at 9 days. It is not a linear drop.
I don't claim to have the answer, but anyone that takes a drug this toxic for longer than necessary should get some answers to what might happen as a result. It seems to me that some of you show a strong bias towards taking it, so you are accepting a supposition of less side effects after stopping without any proof. You are also overlooking the negative possibilities of taking it for a longer time at less than recommended dose levels/intervals.
I doubt I will change anyone's mind, but I feel better making sure that I have stated my concerns. Just the guilt my mother passed on to me - LOL.
I don't claim to have the answer, but anyone that takes a drug this toxic for longer than necessary should get some answers to what might happen as a result. It seems to me that some of you show a strong bias towards taking it, so you are accepting a supposition of less side effects after stopping without any proof. You are also overlooking the negative possibilities of taking it for a longer time at less than recommended dose levels/intervals.
I doubt I will change anyone's mind, but I feel better making sure that I have stated my concerns. Just the guilt my mother passed on to me - LOL.
If, as Dr.D says, there is a half-life of interferon of a few weeks, then it seems that there shouldn't be any on-off to the immune system from troughs in interferon level.
Several months ago I had my doctor read HR's argument on why someone should taper (what Gauf posted above), and she agreed with his logic. I still plan to taper with the intent of softening the transition for my immune system.
By then I'll have taken 88 weeks of the poison. Personally I don't think 7 more weeks of tapered interferon is much of a risk. But I do think that if there is any way to lessen the possibility of long-term sx from coming off of tx, I should give it a try.
As with so many other aspects of this stupid virus, there isn't enough research and individuals have to make their own decisions on courses of action.
smaug
Several months ago I had my doctor read HR's argument on why someone should taper (what Gauf posted above), and she agreed with his logic. I still plan to taper with the intent of softening the transition for my immune system.
By then I'll have taken 88 weeks of the poison. Personally I don't think 7 more weeks of tapered interferon is much of a risk. But I do think that if there is any way to lessen the possibility of long-term sx from coming off of tx, I should give it a try.
As with so many other aspects of this stupid virus, there isn't enough research and individuals have to make their own decisions on courses of action.
smaug
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