Tapering of interferon?

[flcyclist]

Several on the forum are familiar with the concept of tapering interferon at the end of trt, but it is new to me.  I’ve seen some minor mention in recent posts about tapering and the rationale for doing this sounds reasonable and worth consideration.

For those not familiar, the idea is to slowly taper the interferon so your immune system can gradually return to normal, producing its own interferon and better identify any stray virons floating around at the end of treatment potentially avoiding what we all want to elude - relapse. The other concern is abruptly stopping the injections could lead to potential withdrawal issues and post tx symptoms such as rashes, depression, etc.  

Sorry to rehash an old topic since it was discussed at length 2007-09 with a ton of posts.  I’m only at week 14 of 48, so I have plenty of time to consider this as a possible option.  

Are there any trials/publications to support the tapering of interferon?  There seemed to be some strong opinions on both sides and I’m wondering if there is any new information to support the possibility of avoiding relapse due to the sudden removal of interferon.  It didn’t sound like the tapering of riba was necessary due to its long half life.  I guess the other issue is getting your GI/Hepa to agree with this concept and having your insurance approve it.  

Any thoughts or opinions?   Anyone do it or plan on it?

[copyman]

I respect your opinion as well. To each his own.........

[Andiamo1]

I addressed both options in the last couple of posts.  As to extending beyond the prescribed duration, Interferon is a very dangerous drug and without concrete proof that a taper would help, I would not do it.  That's just my opinion.  I respect your opinion, but would not follow it.

[copyman]

Please read my original post more carefully.  

I wrote: "This is to be done after ALL REGULAR SHOTS ARE DONE"

I would do this ONLY if I was able to acquirer additional inf.  NEVER shorten the TX.

[Andiamo1]

I agree with you.  There is no scientific evidence that our immune system needs to taper off interferon.

Whether we are on a 24 or 48 week regimen, the duration is the result of many tests.  Starting to dose reduce before our prescribed end point introduces a known risk with an unknown benefit.

I tried to find some trough level graphs on the net, but most of the tests comparing interferon with pegylated interferon were done so long ago that I couldn't easily find a graph.

What I suspect you will find is that reducing the dose will leave you unprotected on day 5 or 6.  That means if you really needed the 24 or 48 weeks, the virus would start to replicate on those days when the trough level dropped lower than the required level to inhibit HCV.

[Trish77]

""it would seem to make sense to simply extend full treatment another four weeks or so rather than lesson inf"

The whole idea of tapering off is to allow the immune system to slowly adjust to fight on its own. I think more benefit would come from the tapering then adding 4 weeks of a full doses. "

There's the rub, aye?  I'm not convinced that tapering has the effect you're saying it does and that the immune system response is improved by tapering but I also can't say it doesn't.  It's an interesting discussion always and I wish there was more data on it and in the end, one goes with what makes sense to them based on their comprehension of available data and discussions with the treatment team.  

Andiamo, as someone left with "souvenirs" from interferon, I agree that one should proceed with caution on continuing interferon past the "stop" date and only with very good sound reason.  Cheers to you and hope your summer is going well.

[copyman]

Just to clarify,

I disagree with this statement:
"it would seem to make sense to simply extend full treatment another four weeks or so rather than lesson inf"

The whole idea of tapering off is to allow the immune system to slowly adjust to fight on its own. I think more benefit would come from the tapering then adding 4 weeks of a full doses.

As for not knowing what tweaking or tapering TX with the new PI's will do, I can only speak for the PI I did, Telaprevir. I didn't have any adverse effects from tapering off the inf.

[willbb]

I realize that many people did what they felt they had to do as far as their own particular tx.and that protocols were often altered and as you did above told the OP what you thought worked for you.Also ,you asked  your Hepa what his thoughts were and got the go ahead to step outside the box somewhat.

My point to the OP was that as  just laymen I would pass on to others personal experiences(like you did) however, personally would be very reluctant to advise anyone to take extra or less of anything,especially now with the new meds involved and nobody knowing yet how these will effect us in the long term....,as one of the posters above did by suggesting "it would seem to make sense to simply extend full treatment another four weeks or so rather than lesson inf"
I just personally would not be comfortable advising that to anyone treating.

Yes...all done on this...and apologies flcyclist...again congrats on your success.

Best to you
Will

[Trish77]

""If one thinks there might be remaining virons, it seems to make sense to simply extend full treatment another four weeks or so rather than drop the riba and lessen the interferon. "

This sentence seems like advice to me on how much medication to take "

No...simply a comparison between tapering over four weeks or doing full treatment over four weeks if the theory is to mop up any remaining virons by tapering.  I've explained my intent but you insist on accusing me of pushing my point of view and now prescribing medication! rather than sharing my own thoughts on the subject, no different than anyone else in this thread...or you in the many threads you post in.  This is twice now I've clarified and twice more than I should have, so I'll leave you to your own interpretations and I don't wish to interrupt this thread any further in response to your interpretations.

flcyclist.......my apologies.  :(   Scots wha hae.  

[copyman]

I don't consider taking an additional 1 & 3/4 shots extending tx. Extending tx to me would be doing 72 weeks. Many members here, especially the old timers became pro-active and "thought outside the box" when it came to "their" TX. No one followed a particular  protocol and did what they thought was right for them. Many did extra shots if they had them left over at end of tx. People come to the internet seeking help and opinions. They then decide what is right for them.
I'm not telling anyone to taper off. I felt it was right for me and gave my opinion on why I think it worked for me.
When I was treating I asked a hepatologist about the tapering off and he liked the idea. He told me go for it.

[willbb]

flycyclist..I know you were just looking at  theory"s and discussion.. good luck with tx..  ..I know you  are off to a great start.. a real good predictor of success.. hang in  ..:)

Will

[flcyclist]

Will/Trish,

I recognize all information provided here as opinions, taking everything with a grain of salt and would never change treatment protocol without discussing with the doctor.  I also recognize the depth of knowledge of some who have been fighting this battle and I appreciate and respect your input.  The information provided has helped me better prepare and understand the challenges of treatment.

Thanks again........

[willbb]

Any thoughts or opinions?   Anyone do it or plan on it?
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I gave you my best thought and opinion on this .not sure here who is giving advice.


"If one thinks there might be remaining virons, it seems to make sense to simply extend full treatment another four weeks or so rather than drop the riba and lessen the interferon. "

This sentence seems like advice to me on how much medication to take


As a matter of fact I would never give someone advice on or how much medication to take...as layman here I think that could be irresponsible and possibly dangerous.

best to you ..and yes flcyclist..it is always good to discuss.:).

Will

[flcyclist]

Thank you for the feedback.  Any yes, I'm not looking for advice from forum members, since I realize they aren't doctors/nurses, with maybe a few exceptions.  However, some have considered this issue and might have valid reasons to consider it in tailoring their treatment protocol.

Although the idea has some merit, I agree that without the data from trials to support it, I'd be very reluctant to seriously consider it.  I'm a bit surprised there have been no trials to explore this, along with some of the potential issues of abruptly stopping the inf injections.  

Since riba has such a long half-life and takes months (?) to clear the system, my initial concern of abruptly stopping the inf and any stray virons rebounding could be mute.   This is all very new to me, so thanks for indulging my curiosity.

Trish - the FL heat has created some challenges with heat/sweating and an angry rash which back under control.  Actually, FL looks cooler than most areas north, so hope the heat wave leaves us soon.  Other than that and some general fatigue, trt is going ok.  Thanks for your thoughts. :)

[Trish77]

To my understanding, you weren't looking for advice...you were looking for input and discussion.  I'm quite confident you have the ability to take the various contributions and come to your own credible conclusion together with your treatment team, who seem to have been doing a great job so far.  

Personally, I'm not suggesting you should extend treatment to allay any concerns you might have for virons that are laying low.  That might apply in some circumstances but in your case and in this thread, I'm merely talking theory and comparing approaches between tapering interferon vs extending treatment, if those concerns existed and were reasonable.  I think you know that, but I figured I'd make that perfectly clear in general.  As I've already said, I have not to date seen anything that supports tapering other than that one study and that's very vague to me and not credible enough on it's own, that was simply an abstract and the full study might show what their theory is based on.  

Aside from that, I think what matters most is the results of PCR's you've had to date, your adherence record and what is known about treatment results based on those things.  Hope you're managing the sides okay in this heat.

Trish

[willbb]

I would be very reluctant personally to give advice on whether to take more of a prescribed drug (especially one as powerful as INF.) without some clinical data to back up if there is a benefit or not.
The theory sounds plausible..however..why would it not be on the labeling ...was there any studies done?

There are many many people that post they are having serious long term side effects post treatment from all the INF. injected....personally I would want to have good data that supported it would help  before I did even more than the prescribed amount...but thats just me.

Will

[copyman]

flcyclist : Of course using a vial for more them one shot would be ok. I meant don't re-use syringe.

Trish: My thinking was not to "catch remaining virons"  but just in case any occult virus is lurking.
Of course to do this you had to be undetected all along otherwise just extend if you were a late responder.
I think it makes sense to allow the immune system time to slowly learn to "kill" virus on its own. After all it had help being amped up with interferon for 48 weeks and could be lazy when abruptly stopping the drug.

It just made sense to me, figured it couldn't hurt.

[Trish77]

Just a note on the overthinking stuff....I think that's my modus operandi...lol !!  I'm still thinking about it when everybody's moved on to the next topic...still might be a dust bunny that has some info that might shed some light, you know?  :)  Might as well laugh at one's own foibles, eh? :)

All the best.

Trish

[Trish77]

I'm going to bump this up so that maybe willing will see this.  

I confess I don't get the logic of tapering interferon to ramp up our own immune system to catch remaining virons.  If one thinks there might be remaining virons, it seems to make sense to simply extend full treatment another four weeks or so rather than drop the riba and lessen the interferon.  So on that note, I don't get the reasoning for it.

As for lessening the potential for depression, I'm not sure what to say about that.  Post-treatment depression doesn't hit everyone so I'm not sure where that comes from.  It's also relatively common in cancer patients also, not all of which are doing interferon.  Not sure tapering helps there either....but not discounting it.

I never did see logic in tapering but then there's this study from 1996:

http://www.ncbi.nlm.nih.gov/pubmed/8707264

I haven't seen much else on the subject but Shiffman is no slouch and clearly they had some kind of theory that made them decide to study this specifically.  I just don't know what it is.  I've been involved with tapering discussions in the past and don't recall reading any information that stuck with me as supporting it but perhaps, as Evangelin notes, willing has some thoughts on the subject.

Good luck with your treatment and hope you're managing with the ups and downs of it okay....always rooting for you.

Trish

[flcyclist]

Since Pegasys is also available by vial, couldn't you extract only what was needed rather than throwing out the remainder in the syringe?  Can you do more than one extraction from the same vial without contaminating?  

To all:
I don't like to overthink these things, but just exploring the options.  Thanks for the responses.

[copyman]

Sorry, actually was 4 extra doses with 1/4 dose included, 3/4, 1/2, 1/4, 1/8

[copyman]

I tapered off at end of my tx and felt it helped me attain SVR. This is to be done after all your regular shots are done.

I was able to get 3 extra doses of interferon, don't ask me how, you have to be creative :)

1st week 3/4 dose

2nd week 1/2 dose

3rd week 1/8 dose

Don't save and re-use any of the interferon, discard it and use new dose each time.

Best of luck

[evangelin]

Bali05 did research on this subject too.
Ev

[evangelin]

I don't have time to search for it right now but I think that Willing said there is now some good data  to back up this theory .  It was something that I just read recently, I think.  I was looking up some information on predosing Riba and it might have been with that. Maybe Willing could post it again but he is feeling lousy these days on TX.  Surely someone else will have also read it and chime in.  I don't think I dreamed it up but I often can't recall where I read things.
Life induced brain fog.  :>)
Ev