Well boys & gals, had to stop my riba today.

[orleans]

How long will I maintain a useful amount of riba in my blood? I was 100% compliant until 1/30, that is 26 weeks. I suffer migraines and they have progressively become more numerous the last 3 months. I decided I was gonna make 24 wks no matter what. Was intending to do 36 weeks as a RVR. Starting last tues. EVERY time I took my Riba I got a headache. Imitrex is the only thing that works for me but you are not supposed to take more than 4 doses per month. My Neuro. says 8 doses a month are safe. 1 or 2 doses a day is NOT good. Gonna see if I can get in to see him but he can be tough to get to. Soooo, back to my ???. I know riba has a very long 1/2 life. Anyone know how long I can go without it before re-starting it would be a waste? jerry  

[granitekonig]

bump

[orleans]

Thanks to all, what a great resource we have here, being able to air things out. This forum has always been such a help when trying to come to life impacting decisions. again, thanks, jerry ps  STILL not sure just what to do:)

[lbl1007]

good luck
lbl

[HectorSF]

Thanks CS. Great news. I am not familiar with Alinia...so it looks like orleans should be good to go.

I wish him the best.
HectorSF

[CockSparrow]

And then there is this bit
The only subgroup of patients who did not develop breakthrough or have an increased relapse rate after prematurely stopping ribavirin were those with an RVR.

Plus he is taking Alinia which has a low relapse rate anyway.

CS

[HectorSF]

You may want to read this paper which explains how Ribaviron works and how it effects the SVR rates if the dosage is not optimal. Basically it says that reduction if Ribaviron after week 12 has a big impact of SVR. The SVR rate declined from 67% among patients who received > 97% of their ribavirin dose to 36% among patients who received  60% to 80%, > 80% to 97%, and > 97% of the planned dosage. Among patients who received > 97% of their expected dose of ribavirin for 48 weeks, the SVR rate was 67% and the relapse rate was only 19%. On the other hand, among patients who received  97% of their ribavirin dose to 36% among patients who received < 60% of their ribavirin dose. Therefore, the use of full-dose ribavirin is important not only initially but throughout the duration of treatment. Clinicians should attempt to maintain adequate ribavirin exposure throughout therapy to give patients the best chance of achieving an SVR.

Best of luck
HectorSF

[orleans]

Hey lady, Just seem to have run out of wiggle room. 100-200mg of Imitrex a day is really the only other option I see right now. Maybe my Neuro. has a trick up his cuff! jerry

[orleans]

Did a 4 week lead in with the Alinia. If you add that it would 30 weeks. I have struggled with Migraines for 15 years. Around 6-8 per month for the last 3 years. (Funny note, before I was dx, 2/06 I was a moderate daily drinker. 3 drinks MAX. Back then I only had 2 or 3 headaches. After dx,not a drop. That is when the headahces got legs. Go figure!)
The reason I am convinced it is the riba enough to deviate from my plan (remember I have been 100% compliant up until this past fri. 100%) is that when I take my riba it gives me a funny feeling in my head and upper chest in about 30 min EVERY time. A week ago tonite an odd thing happened, at the same time the riba was doing it's thing I had a migraine on set, a feeling I unfortunatly KNOW only too well. I blew it off but it kept happening, for a week! I have taken over 1000mg of Imitrex in a week. That stuff can STOP a 55 year old mans' heart! I have to break this cycle and riba is by far the prime suspect. I am a RVR, 2weeks UND and ALMOST decided to stop tx at 24 wks any way (28wks w/lead-in) If I were not stage 3 I WOULD have as the DATA for this is overwhelming. I decided to go 36wks for good measure. It is rare for me not to meet my goals but I am not (try not!) foolishly inflexible. I see my Neuro. thurs. , maybe he can help. I dread telling my Hepotol. as his earlier comment was that maybe I should just not treat the migraines. Ofcourse, he has never had one. jerry

[Trish77]

The odds ARE in your favour with an RVR and low viral load combined and solid full adherence all the way to Week 30.  It's a helluva roll of the dice just the same and I hope you win big.  

Trish

[geterdone]

You maybe one of the ones that just can not tolerate both compounds in your system at the same time, kind of like a magnet with their polar ends, instead of embracing they are repelling and it is just not working for you. I think your running the danger of losing what you have worked for up till now. As others have said, ditch the alinina hold the riba at 600mg and see what happens but to stop the riba all together at this juncture may or may not jeopardize you achieving SVR but are you really sure the dice are in your favor even with the RVR?

jasper

[geterdone]

I have a question for you, when did you start the alinina? I am reading the intor and you said you have completed 26 weeks and the headaches started about 12 weeks ago and came on slowly and then progressed to this point of reducing the riba thinking it may be the problem. But you are still having problems with the headaches and you have reduced the riba down to 600mgs and are saying the problem still persists. I don’t think it is the riba or the interferon but the alinina. Just my 2 cents but maybe you can clear it up for me.

jasper

[orleans]

my dr gets offended if you mention a study. he's the expert ya know. i have had to make my own decides. he was supposed to be a big wig, professor, text book writer etc. etc. my belief is that there are just too many patients on the conveyer belt because of this epidemic. already changed drs once so i'm just gonna muddle through

[jmjm530]

oh, I forgot me just got a record "snow blizzard" in London -- what was it, ten inches -- in parts of the United States we call it a light dusting :)

[jmjm530]

afraid you'll win the snowball fight, given my tendinitis :) I wasn't aware this was a "fait accomplit" .and i do appreciate your studies and input. Just playing devil's advocate because does not appear to be black-and-white issue and hopefully anyone considering dose reduction will grab as many of these fulltext studies as possible, pour over them, then bring them to their doctor.

[jmjm530]

our posts crossed, but shiffman makes my argument a lot better :)

[HCA]

Sure-you get conflicting studies as well.
Just trying to provide some scientifically based comfort in the face of a treatment decision which is a fait accomplit in any event.
We can always settle it with a snowball fight!

[jmjm530]

I mean, RVRs may indeed be a unique subset. But still unclear how this would affect someone who stopped riba completely as opposed to dose reduced and therefore still kept some serum rebel levels.

[CockSparrow]

According to Shiffman, it is almost impossible to get Riba dosing below the 80 80 80 Rule unless you stop taking Riba. When this happens breakthrough and relapse rates are significantly high.
Except for one little subgroup, RVRs.

CS


Optimizing the Current Therapy for Chronic Hepatitis C Virus: Peginterferon and Ribavirin Dosing and the Utility of Growth Factors. Clin Liver Dis 12 (2008) 487–505
Mitchell L. Shiffman, MD

Prematurely discontinuing ribavirin leads to breakthrough and a higher relapse rate, even if the peginterferon dose remains unaltered. In a recent study, patients who were HCV RNA undetectable at treatment week 24 were randomly assigned to stop ribavirin and continue peginterferon alone or to remain on both drugs [8]. Within 6 weeks of stopping ribavirin, breakthrough began to occur and this increased stepwise over time. At treatment week 48, 24 weeks after stopping ribavirin, breakthrough had developed in 12% of patients. In contrast, breakthrough occurred in only 3% of patients randomized to continue peginterferon and ribavirin, and each of these patients prematurely discontinued ribavirin or both drugs in response to adverse events.

The only subgroup of patients who did not develop breakthrough or have an increased relapse rate after prematurely stopping ribavirin were those with an RVR.

As opposed to interrupting or prematurely stopping ribavirin, which enhances breakthrough and relapse, recent data suggest that merely reducing the dose of ribavirin in response to adverse events does not significantly affect these milestones, and therefore has little impact on the SVR.

It is therefore apparent that patients could not have received less than 80% of their ribavirin dose in this study through dose reduction alone. The only way this could have happened was for patients to have missed doses.

Missing just 3 days of ribavirin reduced cumulative ribavirin exposure at week 12 to 81%, and missing 7 and 14 days reduced this to only 77% and 71%, respectively. A more recent analysis has evaluated the impact of stepwise ribavirin dosing, from greater than 97% to less than 60% of the total expected cumulative dose, on virologic response and SVR [9]. It is important to note that this study included only those patients who remained on full-dose peginterferon for 48 weeks, and therefore evaluated the impact of reducing only the ribavirin dose. No significant impact of ribavirin dose on virologic response was observed. A significant decline in SVR (from 57% to 67% to only 34%) did occur but only when the total cumulative ribavirin dose declined to less than 60%. As illustrated in Fig. 5, this can only occur by interrupting or prematurely discontinuing ribavirin dosing.

[jmjm530]

yes, both quotes seem on "unequivocal" and therefore this study and others like it really have to be carefully combo over in full text before basing any kind of treatment decision on it.

[HCA]

This qoute is fairly unequivical tho'
'Ribavirin dose reduction had a minimal impact on SVR in the subset of patients who achieved rapid virological response (RVR) by four weeks, even if they received less than 60% of the intended cumulative dose'

[jmjm530]

this study really has to be gone over with a fine tooth comb and also compared to other studies with the 80/80/80 rule. Also, unclear if the 60% is broken down into those who stopped riba completely or just some sort of average.

From the same study mentioned:

"To address the issue of the impact of dose reductions after week 12, we evaluated patients who had greater than 97% ribavirin exposure up to week 12 and then a reduced dose during weeks 13-48. Table 4 shows that ribavirin dose reductions after week 12 for patients with earlier optimal exposure had a negative impact on SVR when the cumulative exposure during weeks 13-48 was 80% or less (P = .0372; odds ratio, 0.79)."
http://www.natap.org/2007/HCV/012607_02.htm

[HCA]

Found another version of the same thing.
http://www.hcvadvocate.org/news/newsRev/2007/HJR-4.3.html#1

[HCA]

Quote for you;
'The volume of distribution of ribavirin is large (2000 L/kg) and the length of time the drug is trapped varies greatly from tissue to tissue. The mean half-life for multiple doses in the body is about 12 days, but very long-term kinetics are dominated by the kinetics of RBCs (half-life 40 days). RBCs store ribavirin for the lifetime of the cells, releasing it into the body's systems when old cells are degraded in the spleen.'
I'll try and find the study.

[jmjm530]

again, I'm not disagreeing with you, but I think you would agree that Jerry would be best served if he tried to dig up the actual study, in full text version,  to go over with his medical team.

Jerry, as mentioned earlier, your rebel levels will decline probably within days. How much of an effect this will have at your treatment juncture, with alinina , I really have no idea