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Avatar universal

Double dose interferon

How many weeks do people usually DD if that's the path that they are to take?
59 Responses
Avatar universal
I'm talking about beginning of tx ,,,,,4 weeks?
Avatar universal
Until you are UND. No point doing it for longer.
So basically this would work out to be 4-8 weeks for G2s/3s.
Because you cant get the results of a 4 week PCR all that quickly, I would keep DD until you have the results.

CS
131817 tn?1209532911
Sounds right to me!  Get that UND, maybe it will only be in 2 weeks! Don't do both shots at once, I would do mid weeks.  Good luck with it!  That is what I would do too!..

Linda
Avatar universal
Since you reached undetectable at 4 weeks with standard dose interferon I wonder how this is relevant to your situation - particularly if you would stop the double dosing at the point that you are undetectable. I thought the Peg double dosing approach was aimed at treating those people who didn't reach RVR and/or EVR. You did so I am again perplexed by this question - but it sure isn't the first time. Mike
Avatar universal
In general, I have to agree with Mike and point out again the purpose of tx is to kill the virus and not the patient. That said, if you don't mind taking what some might consider unreasonable risks given your histology and prior RVR, then double-dosing in theory could hasten your RVR -- in other words getting you to UND in let's say 3 instead of 4 weeks which in spite of no study data, one could reasonably argue would give you a better chance of SVR.

This, of course, would require weekly testing, which I believe you had before? But again, I doubt this is the problem and what seems to be the answer is longer (48 weeks) of tx this time around and perhaps with a different Peg --  i.e. Peg Intron if last time you used Peagasys -- although one could reasonably argue to stay with the same Peg since it brought you RVR last time.

Curious, exactly what was your new doctor's original recommended tx program  in  terms of dosage and tx length? Also, how much of your input  -- Alinia, etc -- is being added to that recommendation or is it still a work in progress?

-- Jim
179856 tn?1333550962
You'd  be better off upping the riba if anything - it's my understanding that double dosing peg won't do much to you as a previous RVR except kill your thyroid and cause all sort of hellish autoimmune problems.

You can't just start doubling up on meds out of nowhere and add things on as if it was a game or you can expect pretty big problems.

I would seriously rethink the double dosing peg -you need more time and more riba.  Do the SOC of 48 weeks and maybe add one 200 to weight based but leave the peg along. As an RVR it's just not what you need at all.
Avatar universal
Remember the 6 months of interferon I just received? Well guess what? The boxes say 360mcg every week on it. I didn't realize that - who would think to look cause I was RVR last time. But my doctor says my immune system stinks being it came back and maybe thats why he wants to do this - who knows.

But anyhow,I called the pharma and he said the script that he received from the doctor was 360 for 3 MONTHS....I said , well that is news to me, cause he never told me that.

I emailed doc and told him and said I would call him today or tomorrow. I couldn't call him in the morning cause (get ready for this one) I had to go over NYC to my ENT cause he has the Cat Scan that I just had done to see if he sees anything.....got over there and winds up the guy didn't scan the part that he wanted scanned!! I'm still trying to get over that one. Ticked off, not that it was the doctors fault.  

Jim. Alinia through out treatment and I asked if I can taper down interferon at the end and continue Alinia for 3 months,,,he said yes to it all.
Avatar universal
Yeah so, maybe the script is a mistake, but maybe not.
179856 tn?1333550962
So therefore you are going to be double dosing on peg at 360 = that makes no sense to double the meds and the chance at reactions (especially in light of your GI issues) and do half the time.  You should seriously get a second with Dr. J.
Avatar universal
MO: But my doctor says my immune system stinks being it came back and maybe thats why he wants to do this - who knows.
-------------------------------------------------

I'm a little confused.  Are you saying you found out that your doc wants you to double dose by looking at the boxes and noticing that your're to take 360mg/week --  or did your doctor have this discussion with your prior? Because if it's the former, that's a h*ll of a way to find out. As to "who knows", I would make it my first priority to learn why your doc wants to do this, if indeed he does.

Obviously these are important issues, and if not already, I'd have a face-to-face - or at least a phone conversation -- with the doctor and make sure you know (and agree with) exactly what the treatment plan is -- doses, testing frequency, etc -- before you start to treat.

As you know from last time -- as we all know -- the best surprise in treatment is no surprise when it comes to getting from your medical team what you expect. And the best way to have no surprises is to make sure everyone's on the same page before you start.

And given what seems to be developing into a complex tx regiment, it might be prudent, after agreement between you and the doc, to write all of it down -- drugs, doses, test frequency, helper drug criteria, etc --  and then email it to him to once again confirm that you're on the same page.

Personally, if what I think you're saying is that you plan on double-dosing for 3 months -- I think it's overkill for someone like yourself with little or no liver damage in terms of risk versus rewards but I'm sure you knew I'd say that anyway.

-- Jim
Avatar universal
NY,

Our posts crossed. I agree 100% with your advice.
131817 tn?1209532911
As a relapser too, i sure would double dose for a while. Mistake or not, most likely not! Who prescribes 360mg a week?  Unless they mean it. We are in a different world, our chances of SVR are much lower. It it is too hard, do a half extra dose a week. With the Alinia and the DD, you are in uncharted waters, but I sure would do it! You sure don't want to do this again!

Linda
131817 tn?1209532911
As a relapser too, i sure would double dose for a while. Mistake or not, most likely not! Who prescribes 360mg a week?  Unless they mean it. We are in a different world, our chances of SVR are much lower. It it is too hard, do a half extra dose a week. With the Alinia and the DD, you are in uncharted waters, but I sure would do it! You sure don't want to do this again!

Linda
131817 tn?1209532911
As a relapser too, i sure would double dose for a while. Mistake or not, most likely not! Who prescribes 360mg a week?  Unless they mean it. We are in a different world, our chances of SVR are much lower. It it is too hard, do a half extra dose a week. With the Alinia and the DD, you are in uncharted waters, but I sure would do it! You sure don't want to do this again!

Linda
Avatar universal
JIm agree 100% with what? GI issues, meaning parasites? Thats a 6 day Alinia tx, re- scoped and tested negative. So thats a non issue at this point. Parasites aren't like having IBS or something. Once they are txed - thats it. I am on Alinia still just so there wasn't any gap in between the para tx to the hepc tx.

But anyhow, never discussed dd, but maybe he thought of it as he was writting the script, who knows. Or it could have been a mistake by the girl who called it in. I have a feeling this is what he wants to do and Yes SFbaygirl, I agree with you, I want to do it, I would rather do this and give it my all than to do this stuff again. My husband is concerned if this is what the doctor wants, but if this is what the doctor says to do, I will do it. I'm up for it.

But anyhow Jim,I will talk to the doctor prior to doing this, if this is what he wants me to do and its not an error. This all came about yesterday - before that I hadn't noticed it said that on the boxes, so I just haven't had the time to call yet. I was in the city most of the day,,ENT (as mentioned) and then hung out- ate etc,,,so just didn't feel like doing all this phone calling and not in the mood after being at ENT anyhow.

As far as sitting down and writting the plan,,,he doesn't give me a hard time on anything when I ask. (Alinia, taper down etc) So I see no problem in being on the same page or not. As far as I knew, we were on the same page, until this 3 month thing, but I will have to check with him tomorrow or maybe he emailed me back, I didn't check my mail.

So I'll try to find out more tomorrow. I'll ask Doubledose if I can have his nickname and I'll ask Labrat if I can have his nickname for my middle name:)
seeya later,
MO
131817 tn?1209532911
Good for you! So you are going to continue the Alinia, right?  Jim, if you had relapsed are you going to tell me you wouldn't have DD'ed too? I find that hard to believe, at least some half doses on top of the regular doses. I know you did some extra Riba, right?  Perhpaps a bit of extra Riba would be good...we don't want to kill the patient though!  Did you get anemia last time MO?  If not, I would ask for extra Riba!  Okay, MO you are ready for a name change anyway...you don't know what I am gonna call you! lol

Linda
Avatar universal
MO,

I agreed 100% with NYGirl's post where she suggested a `consult with Dr. J., for reasons both NYGirl and myself gave. As to the rest, it just seemed odd that on one hand you're very involved in your tx plan with Alinia, etc -- but on the other, you don't seem to know how much Peg the doctor is putting you on -- sort of like the forest for the trees thing.

SF,

I did double-dose the first time. But only for three weeks, and only because I was told I was between stage 3 and 4. My understanding is the same as Mike Simon's -- see above -- that double-dosing makes the most sense for prior non (or slow) responders. MO was a rapid responder. Also, the usual double-dose protocol is to double-dose either until UND or for the first 12 weeks. I'm unaware of a 36-week double dose protocol and felt it adds more risk than reward to someone like MO who does not have significant liver damage, because the tx drugs are not without risk.

Because of all this, I'm suggesting what NYGirl is suggesting -- and that is that MO run all this by another doc, specifically Dr. J, who happens to be one of the best in the world and right in MO's own neighborhood. Personally, I'd also run the protocol by Dr. A. in Boston, but I don't expect everyone to have triple consults.

Hope this clarifies my remarks and I hope this finds you well.

-- Jim
-- Jim
Avatar universal
I agreed 100% with NYGirl's post where she suggested a `consult with Dr. J., for reasons both NYGirl and myself gave.
-----------------------------------------------
Nah, as far as Dr. J,,,don't feel the need to do that. I am sick of running to doctors. I said to my husband, I should only know as many famous record producers as I do famous doctors.

"As to the rest, it just seemed odd that on one hand you're very involved in your tx plan with Alinia, etc -- but on the other, you don't seem to know how much Peg the doctor is putting you on -- sort of like the forest for the trees thing."

I did know the amount of peg as far as I am concerned cause he told me the only thing he would change was length of treatment.

I don't think I made myself clear though. When I said, do you remember the 6 months of interferon they sent me......yes it was 6 months worth at single dose, but not if its DD. It is 12 weeks worth. So you heard of 12 weeks being done for some?

If he did this and its not a mistake and after having a day to think about it, I am glad he did it cause I kept saying to him 'don't keep agreeing with me when I suggest something IF you think its a bad idea,,,,,you're supposed to be the genius, not me."

So anyhoo, in a way its good that he took it upon himself because he knows how I am and it shows it doesn't frazzle him. By that I mean "my obsessive behavior". Most doctors would have run it by me knowing how I am - neurotic. But this doctor takes me in stride just like my husband does and that's good and thats why I get along with this doctor so well. My husband thinks this doctor is the perfect match for me as far as being able to deal and he keeps his cool and has a great sense of humor. We are opposites as far as he doesn't cross all his T's nor dots all his i's,,but then again he has to deal with me double crossing T's and putting 2 dots on every "i."

So I'll see whats what. But Jim, I am trying to get out of my knee jerk approach to life. Its very unhealthy and I am starting to realize that. I was mad at first about not knowing about the dd, but now I am fine and yes I should have been told if this is really what he wants and is not an error,,,,but his good points far out weigh his bad and this is how I have to look at him, IF I expect people in life to do the same for me...cause we do reap what we sow..And I certainly need some slack cut now and then,,,and then,,,and then,,,,and then...............
Avatar universal
I will ask him about the extra riba maybe for the beginning. I hope he says no. lol
I just took a sip of what I thought was juice from my husband's glass. It wasn't juice. it was Gatoraide - yuk!  
Avatar universal
Yes, I have heard of twelve weeks double-dosing, but not in terms of previous rapid responders. But then again, I haven't had the opportunity to quiz your doctor on the "whys" of his treatment plan as perhaps you will assuming the spirit moves you.

Part of my response was because is due to articles I've read, part to a philosophical difference --  but part also was because I didn't want to see you going down the road of "surprise, suprise" as you did from time to time with your last doc and NP.

Again, the best way not to be surprised is not to assume, but to ask all the right questions before you start treating --  or at least before an event like a viral load test. If for example you expect  a particular test like a sensitive PCR instead of a CBC that might be on the requistion forum. Same with helper drugs, stop rules, extension rules, etc., etc. And if you expect to see the doctor instead of the NP, again, don't assume, ask, ask, ask, in advance.

Anyway, I've offered more than was asked, and it's your treatment not mine. I do wish you the best this time around.

-- Jim
Avatar universal
Anyway, I've offered more than was asked, and it's your treatment not mine. I do wish you the best this time around.
------------------------------------------------------------------------------------------------------
No I like to hear it all and it doesn't need to stay just on the topic.

I appreciate all that you offer - you should know that by now.

Jim, I didn't know you dd yourself. Thats the first time I ever remember reading that. I know you did alot of extra riba, but had no idea you had dd.

You also said to SF "I did dd the first time."  I didn't understand that. You went thru tx more than once?

And I will only be seeing the doctor. That has been established. They even called me one day that he wasn't going to be there and said I know you only want to see him and re-scheduled me.

So I will see whats what.

Thanks again. Good night.
MO
Avatar universal
No, I only treated once -- the wording of my post may have been confusing.

As to my own tx, it' been detailed here many times here the past -- but briefly,  I double-dosed between weeks 2 and 4, then went back to a single dose when I ended up in the ER from too much riba. (I also had over a four-log drop by then). The reason I started at week 2 was because that's when I switched docs.

Keep in mind that  I was under the impression that  I was between stage 3 and 4 and figured my odds of SVR were around 40% with SOC. Odds which didn't sit well with me.  The doc estimated that those odds could be increased maybe 10% with double dosing based on anecdotals from his practice.


-- Jim
131817 tn?1209532911
Okay Jim....I understand you thought you were stage 3-4 by a failed Bx. You DD'ed for a while. Yes, MO didn't say she was doing it for 6 mos...just asking.  I know you. I know you would DD for longer if you were a relapser, to make sure. Yes, MO was an RVR, but that doesn't mean she will be this time. She is a relapser...a total different catagory! She has much less chance of SVR and needs to be more aggressive in tx.  Think about what you would do? You DD'ed during your first tx, RVR'ed at 4 weeks, right?  So why would you be opposed to her doing this now?  I don't get it.  As I suggested, she should do it until she gets to UND. Not saying this is a medical policy, but HR said for relapsers he believes in at least a half dose more during tx, of interferon. Why not? Hopefully, it won't be so bad. If it is stop. Kalio did so and SVR'ed as a relapser. She didn't have the Alinia too, but did use Oxymatrine....It is hard to hear you say that you wouldn't do the same. You and I are on the same page...I don't believe in tx'ing with low stages etc. But if someone is going to do so as a relapser, she has to be agressive. You know the stats for relapsers, why would you be so passive now?  Yes, we don't want to kill the patient, but if they are going to do it anyway, I have to think what I would do? Know what I mean?

Linda
Avatar universal
SF: I know you would DD for longer if you were a relapser, to make sure.
---------------------------

My tx decisions were based on my stats and my advice to MO's is based on her stats. No, if I had MO's stats, I would not proceed as she outlined, without at least checking with one or two other doctors, as mentioned. We'll have to agree to disagree on this one.

-- Jim
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