Last I heard there has been a test for serum riba levels available in Europe for many years now - just not available in the US.
People who are passionate about high dosing riba should treat with Dr. Karin Lindahl at the Karilinska Institute in Sweden. Just remember that her enthusiasm for riba is such, that a large proportion of her study subjects need transfusions :-)
You know what opinions are like...... with conventional SOC, (come to think of it, it may not be convention anymore) it is my belief the higher the dose you can tolerate, the better--guided by hgb levels. One size does not fit all. In my case, it took 1600 mg/day to get my hgb down to between 10-11. I weighed 160lbs, +/- 5 lbs during TX. So as you can see, I had a high tolerance for ribavirin. Starting hgb was 18.
I was lucky (well not really--72 weeks, but SVR in the end,yeah) I had a very good Hep doc, who was capable and willing to think outside the box, upping duration and riba doseage..I believe without the high dose ribavirin I would have relapsed. I also worked during tx.
Now how the new PI's effect the equation, is anyone's guess, but believe we have seen published evidence that the riba is still very important.
You are very wise, passionate and convincing about your information on Riba doseage. I am going to talk to my Dr on Monday, if it is not too late. By no means, do I want to jeopordize my chances of UND at week 4 ( and beyond)
There is definitely conflicting info out there. I copied something from a Ribavirin fact sheet which surmises basically what I have been reading. Please tell me if you all confer with what is stated, OR, if this is also in question. The difference seems to be if one is taking Pegusys or Peg-intron. Thanks so much for everyones caring and advice.
~Debbie~
Ribavirin comes in 200 mg tablets or capsules. The approved dose of ribavirin when used with Pegasys is 1,000-1,200 mg (5-6 tablets) daily, split into a morning dose (2-3 tablets) and an evening dose (3 tablets). The actual dose is based on body weight: people who weigh less than 165 lbs. take 1,000 mg daily, and people who weigh 165 lbs. or more take 1,200 mg daily. People with genotype 2 or 3 only need 800 mg daily, split into a morning dose (2 tablets) and an evening dose (2 tablets), regardless of weight.
The approved dose of ribavirin when used with Peg-Intron is 800 mg (4 tablets) daily, split into a morning and an evening dose. However most doctors would prescribe 1,000-1,200 mg, based on body weight, and expect the approved dose to change when more data is available.
Cando treated with Victrelis (boceprevir) and SVRd, I treated with Vic and so far I am und 12 weeks post, willing is taking Vic now, Will was in a trial and may very well have been on triple therapy also. We are not talking about soc alone.
This studies have been going on for several years and it is very clear that both Victrelis and Incivek rely heavily on soc according to the Vertex, Merck, the FDA and many years of trial data.
Unfortunately they don't test for ribavirin absorption. Hemoglobin, viral load decline, other blood levels etc are the only way currently they can even guess if we are getting enough or too much drugs.
As other's have said you can't undo not enough and there is only one chance at RVR per tx. It would be a shame if one's doctor stopped tx with Incivek at week 4 because they were over 1000 iu/ml and they didn't use enough ribavirin. It's different to lower someone's dose because they absorbed so much Ribavirin that their HGB dropped drastically then to start low to begin with. Personally I would still prefer to try procrit first before considering reducing ribavirin at all, at least early in tx or before und.
When I began tx I assumed the side effects would probably not be great and anything better would be a bonus, I resigned myself to a $hitty year. Of much more concern for me when treating with boceprevir was not getting to und and svr and as a result having long term resistance that may effect my future efforts at treating. Of course the main concern as with all of us was having the disease continue to progress.
Although the chance of success is much higher then with soc and for the lucky ones tx may be shorter, the stakes are high for those that fail triple tx. We can't just wait 6 months and retreat and currently little is known about those who will try again with a different DAA.
Some day there will probably be a combo of drugs that won't be so hard on us, but these are first generation PIs and we are not there yet. If one doesn't have to treat yet because their disease has not progressed to the point of it being urgent it might be wise to wait, it's a personal decision.
If your disease is progressing or you can't emotionally stand to wait any longer and have decided to treat, my unprofessional opinion is to jump in and fight this disease with all guns blazing, not by dipping ones toe in the water to see if it feels alright.
Good luck to everyone in their battle!
-Dave
RIBA dosage
http://www.drugs.com/dosage/ribavirin.html
you guys are the best. as someone on the verge of treatment, this discussion has been an education. perhaps in the future as more is learned about triple therapy, lower ribavirin doses will be the norm. i see the wisdom for early-adopters in sticking to the trial dosages.
blessings
eric