Be VERY careful upping your riba.
The "Lindahl" study group was closely monitored using HPLC (high performance liquid chromatography) serum riba testing, that to my knowledge is still not readily available in this country. That, and the fact that 2 out of the 9 active participants required two blood transfusions each.
The "tricky" part, if you want to call it that, is titering up the riba in a way that will get you to a preset therapeutic level (difficult to determine without HPLC testing but in theory possible using the level of anemia as a guide) without putting you in the ER, which is where I ended up when I added riba too fast based on my impatience of "catching up" to the Lindahl study after starting a week late.
You have to keeep in mind that it may take as long as 2 weeks to feel the effects of an increase in ribavirin, so the fact that you can tolerate, say an extra 200 mg, means nothing until you wait 2 weeks and see how you are affected. In other words, you don't want to add xtra riba on Friday just because you could tolerate the xtra riba you added on Monday (my faulty logic), because all of a sudden the xtra riba can catch up to you on a delayed time basis. For this reason, higher dose ribavirin should only be attempted in a very controlled manner and under the supervision of your treatment doctor who hopefully has done some research into higher dose ribavirin and ideally has contacted the Lindahl group for more current feedback on their protocols, etc. My doctor and NP were aware of my exact ribavirin dose at all points during treatment.
All the best,
Cruelworld, thats great advice you had from jmjm530,
The general "feeling" among liver docs (supported by many studies, but not a question specifically addressed at the outset of those studies) is that the more ribavirin a patient can tolerate, the better, in terms of eventual SVR rates. Obviously, doing this without careful monitoring, especially for small women, could be very dangerous. As jmjm530 implies the onset of ribavirin toxcity can be precipitous, and increasing your ribavirin dose beyond 'standard' doses should only be undertaken with the knowlewdge of your Doc and with very careful, frequent monitoring of your bloods.
Our posts crossed.
Do they use HPLC in your country? I'm suprised it's not available in the U.S. given all the papers on the importance of riba dosing.
From what I've read, weight-based riba dosing seems somewhat primitive compared to basing riba dose on constantly monitored serum riba level like the Lindahl group did in the Sweedish Pilot study.
My guess is that most of the resources are now focused on the newer and sexier drugs as opposed to tweaking what already exists. I'm certainly no fan of SOC -- esp the interferon part -- but I think many SVRs have been lost in those who really needed those SVRs, because of the underdosing of ribavirin. BTW glad to see you still posting after that little commotion below.
The reason I keep suggesting that your doc contact the Lindahl group is because that Pilot study is getting "old" (at least in HCV research years) and I haven't seen much published by them since directly relating to higher dose ribavirin (HDR).
I would want to know if they have more current data from a larger group, as well as if they've had success with HDR later in treatment, and if so, what doses they used, how long they extended treatment, and what SVR rates are they getting. You might also ask them if they are working with any U.S. doctors and/or know of a good HPLC lab here.
The way you feel about IFN is the way I feel about riba. If Cruel is in week 25 (?) and planning to extend (think he mentioned that a while back) then maybe he's not so late in tx. I just know that I wouldn't touch this plan with a 10 foot syringe. The effects of riba, while on tx, scare me. I must be at least partially copus mentus.
You are in the 'induction trial' and takeing higher doses of riba (think it was 1600, or so). Are they doing any 'special', other than cbc's to monitor your blood stuff?
i would think the extra riba would only be benificial in the beginning of tx. to knock the virus down early on. just my take on it .
Curious. I'm getting ready for an induction dosing trial because I'm early stage 3 fibrosis and feel I have to treat. But all this talk is giving me second thoughts.
Specifically, what I did -- in other words what NOT to do -- was to go from 1200 mg/day to 2000 mg/day by upping my riba 200 mg every 2 days. Even worse, this was very early in treatment -- week 2 -- when my body wasn't at all used to lower hemoglobin levels.
Your idea of upping the riba 200 mg, every 7 days, is obviously more sensible, but still has the potential for overdosing since it takes around two weeks for a change in ribavirin to fully impact your hemoglobin. But again, whatever you do, make sure your doctor is on board, and insist on WEEKLY CBC's at a very minimum (I had two CBCs per week several times) during the time you're increasing the riba and until you hemoglobin stabalizes. The thing you must firmly plant in your mind is that all the xtra riba in the world will do you no good if it forces you off treatment due to unexpected side effects.
Are you suggesting that you would attempt this without the sanction of the doc? You are nuts. As Jim mentions, and as the study report, these people were closely monitored during the trail. And, if I recall (did not recently look at it) these poor souls ran the course of tx at those riba levels. I think you are in week 25 or so? Where did those increase possibilities (50-70%) come from or are they wishful thinking? Why did you decide it was the riba that is lacking, why not the peg? If it was me, and I was a detectable slow responder, I'd look at the IFN first - at least that stuff won't kill you. There are people here (Jim, NYgirl, Bill1954, Fishdoc and currently Spacecst) who have had various experiences and results with increased riba. But, the doc (who has some knowledge) needs to be on board. The risk you are facing is the possibility of too much riba which might cause you to stop the riba altogether. Then where would you be? Then again, if going to 12 riba a day cuts down on the number of threads you open daily....maybe a plan.
You bring up an interesting point I wasn't aware of, as to the fact that "Cruel" is doing this later in treatment -- week 25 as you state.
That said, while the common wisdom in the U.S. is that increasing ribavirin late in treatment isn't helpful, I'm not sure I agree based on a few things I've heard anecdotally from at least one person in the field. In other words, I wouldn't discount it at all, and again, might want my doc to contact the Sweedish researchers and see if they have any data on late treatment high dose riba (HDR) intervention. As to increasing the Peg instead, not sure if that would be helpful since my understanding is that the role of the Peg is to knock the virus down and that already has happened with "Cruel". Not to mention the potential for more long term side effects from increased Peg. But of course you know, I'm no fan of interferon :)
This discussion is about how effecive/safe increasing the ribavirin dose might be with a late responder like "Cruel". I don't see any connection to someone entering an induction dosing trial where I assume you will initially receive higher amounts of interferon but a standard weight-based dose of ribavrin. Induction dosing has been shown to be more effective than SOC in prior non-responders, and my guess is that they are also trialing it for first-time treaters as well but really not sure.