Tapering off the Interferon and Ribavirin at the EOT?

[geterdone]

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?



  

[pkayzim]

You got that wrong jasper.  Depression is caused by certain body chemistry.  It's also inherited.  You need to do some more research before you make remarks such as "its all in the head'

[pkayzim]

Thanks for your posting.  I am 8 weeks off Ribavirin and Solvadi.  I am struggling with depression.  Am on antidepressants, but not out of dark yet.  I am sorry about your struggling and it sounds like you're putting up a good fight.  I keep trying to visualize myself before this depression set in.  I have a great psychiatrist and he told me that it can take a while before the depression leaves.  I'm so glad he told me that so that I don't feel so alone in this.
Phyllis

[Trish77]

I know you really mean that, wouldn't ever think otherwise!  You have been one of my rocks through treatment and your friendship continues to be valuable to me.  I'm just sorry that I've had to focus so much on "me" lately.  I'm doing MUCH better and I continue to reclaim my life and I'm emerging back out of the shadows.  Thank you, jasper...means alot.

Trish

[geterdone]

and I'm hoping your thyroid goes back to normal in the coming months and the depresstion lifts as well, I really mean that!

jasper

[Trish77]

"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."

That's a valid point and I included that in my "quid pro quo" .. that you take into account when you went UND, whether first round of treatment, genotype...since we know that Geno 3's are tougher to treat than was thought earlier...etc.  

Trish

[geterdone]

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.

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.

”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.

I was not promoting FEAR, but, if read several post in the thread inparticular HR's reason why tapering may be good is the fact there is a window which does exist and I was replying to eric's post to that effect as to the drastic drop starting at 9 days after stopping the interferon.

jasper

[portann]

So good to hear from you.

Must run, sorry.

[Trish77]

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

[geterdone]

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

[epiphiny]

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 :)

[Andiamo1]

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.

[smaug48]

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

[jmjm530]

Good point and that is one of the reasons I decided not to taper although my thought process was a little less scientific than yours. I was given an 80% chance of SVR without taper. My thinking was why try something untested with the possiblity of it backfiring. As to the "double dosing" comparision -- there are studies that show that double-dosing Peg can increase the chances of RVR so one has study information  to weigh the risks versus rewards.

[Andiamo1]

Has anyone that is going to taper looked at the trough levels of the type of interferon you plan to use for the taper?  It is possible that you will cycle low enough to turn off some of the immune system response and then take it back up enough to turn it back on.  You could be making things worse for yourself.  You will not reduce the dose in a steady decline as you seem to think.

In my mind, you are playing with fire  - as my mother used to say.

[Marcia2202]

'The Taper itself is no more that TWO additional shots spread out over 4 to 8 weeks depending on what scale one uses.'

Thank you.... that would actually seal it for me. 2 more shots spread over that time is not that much more poison.

If I had the possibility to wean myself slowly off this stuff, I would love to do it. Tapering has always sounded more attractive and logical to me... After having observed the pros and contras, a smoother transition back to 'normal' does sound more appealing to me than and abrupt stop. Unfortunately I will have no way of doing it...

[geterdone]

Thanks! for all who have posted to this thread it has been very interesting to say the least as with the other 300 + threads and of the many views on the subject. I dose spell out the many pro’s and con’s about the topic and a wide range of reasons as to why one should and should not consider tapering off the Interferon, it is amazing in itself. But, for all the controversy surrounding the Taper here is one interesting fact,

The Taper itself is no more that TWO additional shots spread out over 4 to 8 weeks depending on what scale one uses. Go figure! End of Story.

I would be more afraid of double dosing in the beginning even if there is much research supporting it but then again it is more appealing.

jasper  

[geterdone]

It is good to hear others have also gained the insight and the unknown advantages of tapering off the interferon as a logical last step of treatment for which very few tend to not understand on an individual basis. It would be interesting to hear from cruelworld as he also tapered off the meds around the same time I did but am not sure if it was just the interferon or both. In my case, I did taper off all four meds at the same time with the exception of the synthroid which took a little longer because of the bounce up in the INF and riba during the last four week of the soc portion of treatment but did taper that as well in the following month. My personal thought during this time was if I were going to do the one I would do the riba as well, not too sure if I got the step down dosages correct but close enough as they both worked hand in hand during the treatment and should end the process as well, (just my take on it). It should be a breeze in the taper phase if you start in the stabilized dosage range you have been accustomed to before hand and no other unseen colds etc creep in before hand. I did notice while tapering what could be call (my opinion) a step up stage of wellness, like a gently relief of nerve endings through out the body or melting effect but in a good way. I guess it is an individualized thing and wishing you the best. As I has said I hit the ground running but did have moments of fatigue past one month post and have my own opinion as to why that was but closing out the one year mark here I never did have to ask myself, what if. I only know of a few who have tapered but think you will be number 4 when completed, good luck to you in that endeavor.

jasper

[gauf]

Here is the original post from a year ago. (not that long ago) As for his credentials, well, those of us who know him... trust him.



http://tinyurl.com/98fstf

[portann]

I'm wondering if you could provide a date for HR's post (above), as well as contact him to ask him for input on this thread.

I'd especially like to know in which scientific journals he's published and whether we can have access to those publications.

Thank you.

[nygirl7]

I know that HR was playing with this idea a LONG time ago now and do think that Kalio did taper down perhaps..........but I don't know anyone else who did and before I kept those poisons going on into my system I'd see if perhaps HR will come on and explain if he did ever find ANY benefit.

For someone who's gone through the plethora of autoimmune problems caused by the IFN (and they came LATER in tx as it did build up in my body) i would really REALLY caution against taking these drugs any longer than you need to - these stupid AIs will be with me the rest of my life now and if I could have avoided them I would have (but being a late responder.........didnt have a choice).

If it hasn't helped anybody for SURE is it really worth the risk?

[Marcia2202]

Thanks for posting this... That's what I had understood and i couldn't remember where I had read it. Probably in your journal or on a previous post.

[gauf]

I like the idea of tapering and will do it. After the abrupt stop at EOT 2nd tox, my bloodwork never did stabilize. I had low WBC and Platelets that never improved much. Had to follow up with a hemotologist who ran lot's of tests. Why?, never did get an answer.  I will taper and hope my bloodwork will stabilize after this tox. here is an excerpt from an older HR post...

by HR

"It needs to be understood that when stopping IFN, a new form of antiviral defense against possible HCV remnants needs to take hold and establish itself - the adaptive Tcell response, that up to this point was greatly aided by the direct effect of IFN on the hepatocytes and the local intrahepatic immune cells.  With this IFN aid gone all the burden is on the Tcell response, that will typically get stronger if more remnant viruses are seen ( if they can be seen now, because new epitopes are now present)  - with incredible sensitivity, but it takes time to come to full swing and it can furthermore,  at this very critical moment,  be paralyzed by the prominent absence of innate signals needed to get adaptive Tcell  responses going  after IFN is abruptly missing from the equation. Here is one more specific EXAMPLE how the Tcell effect depends on the presence of some Interferon: The presentation of the viral epitopes is performed  - as described in detail in an earlier post- by the cellular proteasome and the class I MHC molecules that bind the peptide and bring it to the surface for recognition by the "cognate" Tcell receptors of the "cognate" Tcell patrolling the liver.

IFN has a strong influence on the intensity of expression - the number of proteins produced per cell - of the MHC class I proteins. Less IFN - less MHC, less presentations- less recognition - less killing of remnant virus infected cells, less general intrahepatic antiviral milieu by the gammaIFN secretion of these Tcells....
If you abruptly stop the enormous whipping up of the hepatocyte MHC production it will likely go into lower than normal mode for a while being so used to the whip...thus temporarily  HCV remnants become invisible to the Tcell system.
If you taper AFTER the end of the full standardized tx period, then you will never have to ask yourself in case you still relapse, if it was the premature tapering that caused it. Tapering in this fashion can certainly cause no propensity for relapse, rather the opposite. Then at least you have done all you could under the circumstances.


What type of tapering schedule?

Each week one half of the previous dose would get you down in a "geometrical" fashion, as opposed to a linear one. 16mcg    8   4   2    1    1/2     1/4   1/8   Stop.

From patients reporting the "feel" of tapering down, each reduction feels quite good. As a matter of fact, some who stopped abruptly reported negative side effects from the counterswings of the system used to all that IFN. The point is, that tapering is not a useless extension of tx sides, but rather a gentle readjustment of the complex immune regulatory pathways directly or indirectly depending on IFN."

[Proactive]

"I was afraid that "Cost" was the answer to my question." Funny you should mention cost, and it does seem doctors are cost conscious.
It will be interesting to see how "cost effective" docs will view the PI's to be..
"In a research note to clients Bernstein's Geoffrey Porges says after doing a detailed pharmacoeconomic (boy, is that a mouthful) analysis he estimates the companies could charge as much as 75-grand per course. "
http://www.cnbc.com/id/28316096/site/14081545?__source=yahoo%7Cheadline%7Cquote%7Ctext%7C&par=yahoo

[Kristina538]

The extender in the Peg was also my greatest fear;  not so much for the damage it would do, but more for any reactions to the IFN and how it would 'build up' over a number of days.   I wanted to know if they had an 'antidote' lol!!    

Nice thread and good to get some different views.