Aa
72 weeks killer dose of Riba
I became negative at 24 weeks, Sep 06, ( strain 1A ) and decided to treat for 72 weeks. In october I increased my Ribavirin from 1,200 mg to a whopping 2,000mg. I am still on this dose and will be treating until July or August. This large amount is tough on my body. Has anyone else out there increased their dosage to this extreme halfway through treatment?
My doctor had read the same study and since I was a chronic non-responder to all my previous treatments, he increased my Riba up to 1600mg a day, back when I was doing treatment. I was on this for 7 mon. I was also on the Procrit and in the last 2 mon. Neupogen. Unfortunately, for me, even this did not get me a SVR, undetected, cleared, status. But, my doctor is aware of this study, and that's the only reason why he suggested this to me, (off-label).
Susan
Susan
Do you take the riba with a high fat meal? The riba binds TO fat - so it doesn't wash out.
Are you taking the pills with water?
I don't know just grasping at straws.
Are you taking the pills with water?
I don't know just grasping at straws.
I might back off the riba some. The fact that you are already doing 72 weeks weight based might be enough in itself for you to svr this time. You are close to finishing the 72, and it would be a shame if you developed complications and had to be pulled off for taking way more riba that you might need. I cleared at 22 weeks on 1200 mg and am half-way to the 72 weeks I will do; I am your size and could not imagine doing 72 at 2000 mg a day. Every week gets tougher and tougher even at my average riba dose.
Good luck to you.
Good luck to you.
I figure the worst which may happen is I develop anemia which I doubt since I am taking weekly procrit. I have treated twice before with bad results so this time I'm going full guns a blazing as long as I can stand it.
Max safe dose for your weight is 1400mg.
You should not self prescribe toxic drugs.
The action of Ribavrin is most important during the early weeks when it helps prevent the creation of a mutant strand which can later cause relapse.
As I said before you are literally playing with fire by experimenting on youself in this way,particularly as I don't think you understand the mechanisms involved.
You should not self prescribe toxic drugs.
The action of Ribavrin is most important during the early weeks when it helps prevent the creation of a mutant strand which can later cause relapse.
As I said before you are literally playing with fire by experimenting on youself in this way,particularly as I don't think you understand the mechanisms involved.
If high dose riba is only important initially why then did the Swedish researchers continue with the high doses all the way through treatment? MY theory is that the virus can hide in any of the tissues in the body ( intestines,kidney tissue, spinal ganglia, etc.) so why not super saturate the tissues with the ribavirin so as to completely disable the virus. FRom my understanding most patients don't acheive svr due to being under dosed with Ribavirin. By the way I have an extensive science background.
The virus uses liver cells to replcate which is where the build up of ribavirin is required.Anyway I have given you my input,so good luck!
I made the mistake of upping my riba BIG in the beginning of treatment. It was only a little pretty pill after all.
That is how I had a six point drop in hemo in just over a week. I perserved and took WAY too much Epogen (it has it's OWN bad set of sides you know, serious things such as the body becomes unable to make it's OWN portion of epo so you die ...)
I kept it up and as skinny as I am was probably taking 1200 - 1400 a day most days.
Then I realized it was killing me literally and cut back to what I had talked the doctor into, 1000 a day.
I never really got "better" but it wasnt desperately as bad.
When I went to Jacobson he went sort of mental (for such a quiet guy) about what I was doing and insisted I drop to 800 weight based. He said that studies had proved this was optimal and taking more would not help and that my body could stop producing the stuff.....that I was playing an extemely dangerous game and I should not be.
So at week 46 I went down to 800 where I should have been all along.
Within a week I felt MUCH better than I had even at 1,000. I can't imagine how I ever was taking 1,400.
I made it to 72 but don't know how I would have faired at that much riba. It's not good for us to take that much that was apparent to me fully.
I wish I had taken 800 all along but I thought being a 1a/1b it would help me.
From what Dr. J. said no, not much.
Of course it's our own lesson to learn. I just wouldn't advise od'ing on the stuff having been there and done that. I can't WAIT to get it all out of me, just can't.
That is how I had a six point drop in hemo in just over a week. I perserved and took WAY too much Epogen (it has it's OWN bad set of sides you know, serious things such as the body becomes unable to make it's OWN portion of epo so you die ...)
I kept it up and as skinny as I am was probably taking 1200 - 1400 a day most days.
Then I realized it was killing me literally and cut back to what I had talked the doctor into, 1000 a day.
I never really got "better" but it wasnt desperately as bad.
When I went to Jacobson he went sort of mental (for such a quiet guy) about what I was doing and insisted I drop to 800 weight based. He said that studies had proved this was optimal and taking more would not help and that my body could stop producing the stuff.....that I was playing an extemely dangerous game and I should not be.
So at week 46 I went down to 800 where I should have been all along.
Within a week I felt MUCH better than I had even at 1,000. I can't imagine how I ever was taking 1,400.
I made it to 72 but don't know how I would have faired at that much riba. It's not good for us to take that much that was apparent to me fully.
I wish I had taken 800 all along but I thought being a 1a/1b it would help me.
From what Dr. J. said no, not much.
Of course it's our own lesson to learn. I just wouldn't advise od'ing on the stuff having been there and done that. I can't WAIT to get it all out of me, just can't.
I treated with 1600 a day for the first 12 weeks of this tx. Taking that much is risky because it can cause anemia and could cause you to have to stop or add rescue drugs or reduce your dose, so I'd watch your bloodwork very closely.I wouldn't do it at all without any evidence it will help.
It does make you feel cruddy on such a dose,at least 1600 made me feel horrid, I did it and my Hgb hovered around 10. I reduced it to the prescribed amount after the first 3 months. I was UND at week 4.
I have read that the Riba is far more important in the beginning of treatment rather than the end and that after you are UND, late in treatment, it is even OK to reduce it, but I have never heard of using huge doeses in the end portion of treatment and I do not think there is any evidence it will do any good.
High doses in the beginning have shown encouraging SVR results.
I plan on reducing the Interferon slowly when I end treatment and "wean" myself off it rather than just stopping the shot from one week to the next other than that I am following the SOC protocol but I take 1200 Riba a day, the doc wanted it at 1000 a day but I was able to convince him to give me a bit more since I had relapsed. Who knows if any of it will help me SVR.
I also double dosed IFN for the first month of tx this time. That didn't seem to add side effects, one shot or two a week seemed no different to me side effects wise.
The Riba however was a different story, that kicked my a$$.
Im wondering why you would up the dosage so radically at this point in treatment?
It does make you feel cruddy on such a dose,at least 1600 made me feel horrid, I did it and my Hgb hovered around 10. I reduced it to the prescribed amount after the first 3 months. I was UND at week 4.
I have read that the Riba is far more important in the beginning of treatment rather than the end and that after you are UND, late in treatment, it is even OK to reduce it, but I have never heard of using huge doeses in the end portion of treatment and I do not think there is any evidence it will do any good.
High doses in the beginning have shown encouraging SVR results.
I plan on reducing the Interferon slowly when I end treatment and "wean" myself off it rather than just stopping the shot from one week to the next other than that I am following the SOC protocol but I take 1200 Riba a day, the doc wanted it at 1000 a day but I was able to convince him to give me a bit more since I had relapsed. Who knows if any of it will help me SVR.
I also double dosed IFN for the first month of tx this time. That didn't seem to add side effects, one shot or two a week seemed no different to me side effects wise.
The Riba however was a different story, that kicked my a$$.
Im wondering why you would up the dosage so radically at this point in treatment?
PS After the first 12 weeks of treatment it's not that important as it was in the beginning. So if I was you I would totally and completely just take what you should for your weight.
I started to fear I would end up with anemia forever - if my body didn't produce enough because I overdid it and it forgot how...it would be a long life on epo or a short life dying.
It helped me to stop the riba addiction.
How much epo do you take, what is your hemo?
At fix feet you are so far over the overdoing it line I worry about you.
It's just like taking double and it doesn't sound safe at all to me.
(PS I only took 1400 on the weekends, mental problem I thought it would double whammy the virus even though I KNEW it built up to a serum level and didn't matter. I was seriously mental and wish I never had.)
PS I've never read this Swedish study but Dr. Jacobson says the exact opposite and that it SHOULD be WEIGHT BASED.
I am a bit unsure of one Swedish study over riding this man with his excellent career and reputation.
I started to fear I would end up with anemia forever - if my body didn't produce enough because I overdid it and it forgot how...it would be a long life on epo or a short life dying.
It helped me to stop the riba addiction.
How much epo do you take, what is your hemo?
At fix feet you are so far over the overdoing it line I worry about you.
It's just like taking double and it doesn't sound safe at all to me.
(PS I only took 1400 on the weekends, mental problem I thought it would double whammy the virus even though I KNEW it built up to a serum level and didn't matter. I was seriously mental and wish I never had.)
PS I've never read this Swedish study but Dr. Jacobson says the exact opposite and that it SHOULD be WEIGHT BASED.
I am a bit unsure of one Swedish study over riding this man with his excellent career and reputation.
It was Swedish not Swiss and they were under full time medical supervision.
Have you self prescribed this dose?
If so you are playing with fire.
Have you self prescribed this dose?
If so you are playing with fire.
I think I can understand your motivation since you have treated twice before and you're geno 1. I can imagine that 'desperate times call for desperate measures'. Others here have also gone to 'extreme tx-ing' and with mixed results. Just be careful out there. I couldn't do what you're doing. But then again, your moniker defines your apporach. Good luck.
Reading these extreme tales, all I can say is, OMG!!!!
I'm definitely in the wrong league.
You sure you guys are human??? :)
My hats off to all for perservering.
The more I go through the less sure I am that I'll be able to do the same.
I'm definitely in the wrong league.
You sure you guys are human??? :)
My hats off to all for perservering.
The more I go through the less sure I am that I'll be able to do the same.
My Ribavirin dose was raised from 1200mg/day to 1400mg/day for the last month, and that was bad enough. 2000mg/day sounds excessive to me. I hope your Dr. is closely monitoring your blood chemistry.
i agree that this sounds like it could be potentially very dangerous w/o close medical supervision & collaboration (might even be that way with it) from what i've read re dosages/ sx etc.
First, I agree with those that say you should only high-dose ribavirin with a doctor's unknowledge and under their supervision.
Assuming thus, I think it's a gustsy and well-calculated move given your past history of two previously unsuccessful attempts and what I assume either to be significant liver damage. I planned on high-dosing myself and actually did 2000mg/day until I ended up in the ER. A little too much too soon for my individual chemistry as apparently I'm very sensitive to ribavirin.
Yes, most doctors here subscribe to the principle that riba is most important early on, but the Sweedish researchers moved in a different direction and they have quite a lot of experience with ribavirin. It must be noted that they also had the advantage of HPLC testing for serum riba levels and were ready to jump in with both Procrit and transfusion when necessary. They also went much higher than 2000mg/day with some patients -- again HPLC testing as a safety gauge -- so that must have to be figured into their 90% success figure.
Personally, I think the peg is more harmful long-term, than the riba, but I'm no doctor and can't back this up medically.
But all in all, I say go for it. Riba till the d*mn virus drops!
What do they say, the third time the charm.
All the best,
-- Jim
Assuming thus, I think it's a gustsy and well-calculated move given your past history of two previously unsuccessful attempts and what I assume either to be significant liver damage. I planned on high-dosing myself and actually did 2000mg/day until I ended up in the ER. A little too much too soon for my individual chemistry as apparently I'm very sensitive to ribavirin.
Yes, most doctors here subscribe to the principle that riba is most important early on, but the Sweedish researchers moved in a different direction and they have quite a lot of experience with ribavirin. It must be noted that they also had the advantage of HPLC testing for serum riba levels and were ready to jump in with both Procrit and transfusion when necessary. They also went much higher than 2000mg/day with some patients -- again HPLC testing as a safety gauge -- so that must have to be figured into their 90% success figure.
Personally, I think the peg is more harmful long-term, than the riba, but I'm no doctor and can't back this up medically.
But all in all, I say go for it. Riba till the d*mn virus drops!
What do they say, the third time the charm.
All the best,
-- Jim
Oops forgive the slip, meant with your doctor's KNOWLEDGE, not "unknowledge". LOL. FWIW my doc knew I was taking 2000mg/day of riba (he initally recommended no more than 1400 but gave me an upper limit of 2000) and to this day I still think he smiles about my ER/crash visit. Black humor some of those docs.
I have a completely different take on your situation. Some people do not metabolize Ribavirin very well, and hence do not get enough into the blood and liver cells to be effective. If your red cell counts remain fairly strong, and you are on 2,000 mg. then I would think you are a low metabolizer (even though you are on Procrit).
I used Procrit twice a week, and took only 1,200 mg. of Riba, and still kept going down to the high 8's on my Hemo counts. I was likely a very high metabolizer, and could barely get by at 1,200 mg/day, with massive Procrit. I weighed near 180 lbs. on starting tx, and am male. I was a type 1-b, previous relapser using daily intron, and then daily infergen, high dose, plus Riba. I reduced the Riba on the first go round, to 800, then 600, due to dropping red counts, and promptly relapsed one month after ending a 14 month daily tx. My second round did the trick, using twice the weight based amounts of Peg-Intron, using 1,200 mg. of Riba daily, and lots of Procrit...all for 72 weeks.
Desperate times indeed call for desperate measures, especially when they are sensible measures, carefully monitored. Your Riba tolerance leads me to believe that maybe 2,000 mg. for you is similar to 1,200 for the average person at your weight. BUT, it is now important to regularly monitor your red cell counts, in case they begin to sink like a rock for some reason. You need to be ready to salvage your tx, and remain safe from deadly consequences. When the RBC's drop under 9.5,or 9.0 you probably need either a little more Procrit, or a reduction to 1,800, or 1,600, or 1,400....etc. depending on the severity of the drop. You want to be early in catching any new pattern with the red cell counts.
Otherwise, if you continue to tolerate the Riba, more power to you. It may just help to bring you the sustained response. You seem to know what you are doing.
And, indeed, Ribavirin is critically important to getting SVR, versus just ETR.
Good luck!!! I think you will succeed and get the SVR!
DoubleDose
I used Procrit twice a week, and took only 1,200 mg. of Riba, and still kept going down to the high 8's on my Hemo counts. I was likely a very high metabolizer, and could barely get by at 1,200 mg/day, with massive Procrit. I weighed near 180 lbs. on starting tx, and am male. I was a type 1-b, previous relapser using daily intron, and then daily infergen, high dose, plus Riba. I reduced the Riba on the first go round, to 800, then 600, due to dropping red counts, and promptly relapsed one month after ending a 14 month daily tx. My second round did the trick, using twice the weight based amounts of Peg-Intron, using 1,200 mg. of Riba daily, and lots of Procrit...all for 72 weeks.
Desperate times indeed call for desperate measures, especially when they are sensible measures, carefully monitored. Your Riba tolerance leads me to believe that maybe 2,000 mg. for you is similar to 1,200 for the average person at your weight. BUT, it is now important to regularly monitor your red cell counts, in case they begin to sink like a rock for some reason. You need to be ready to salvage your tx, and remain safe from deadly consequences. When the RBC's drop under 9.5,or 9.0 you probably need either a little more Procrit, or a reduction to 1,800, or 1,600, or 1,400....etc. depending on the severity of the drop. You want to be early in catching any new pattern with the red cell counts.
Otherwise, if you continue to tolerate the Riba, more power to you. It may just help to bring you the sustained response. You seem to know what you are doing.
And, indeed, Ribavirin is critically important to getting SVR, versus just ETR.
Good luck!!! I think you will succeed and get the SVR!
DoubleDose
No I'm not heavy but there was a Swiss study where 90% of the participants acheived svr using between 2000-3000mg ribavirin for 48 weeks. I currently take procrit and my red blood count is doing OK.
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