Aa
Riba reduced - hmg hitting 9
Had a bout of diahrrea for a week then went to see my Doc. Weight went down to 106lbs at 5''7". I am weak and nasty. I called the doctor because the flipping and flopping in bed was driving me crazy at night. The Doc told me he had been trying to reach me for a week because my blood results showed my hmg was close to 9 and he wants me to take only 3 riba a day instead of my usual 5. Didn't change the albumininterferon of 900. He also suggested Tylenol/PM to fall asleep. He wants me to come in for blood only the day after Thanksgiving.
I feel like this was a major set back for me. I dislike the idea of reducing my meds. I was undetectible at week 12 and thought I was on my way. Now at week 17, everything has changed. My question is - How should I feel about this?
I feel like this was a major set back for me. I dislike the idea of reducing my meds. I was undetectible at week 12 and thought I was on my way. Now at week 17, everything has changed. My question is - How should I feel about this?
Sorry about that lap top!
Good post above and I had more to say but I am too d*m tired to remember it all because I need a procrit or epogen shot and can't have one, LOL!!
You do seem to have really good Dr.'s, care in your tx, problems and thank God as all your dealing with in this.
While I have a great Dr., (and my sides, labs are still doable and nowhere near your problems), I am fast learning a trial is a trial! Rules are rules and so on. A lot makes NO sense as when these trial drugs are out...they'd need all the rescue drugs than, right? I understand the reasoning, but yet.... I don't!
My Dr. did reduce 'outside of a clinical reason' before labs got back 2 weeks ago, but he knew what was up, and he was right.
Lizbo has to get the Hgb and the only way, in this, I think is reducing Riba.
I have wondered if they'd know if we snuck some in :} !!
I give up, going to sleep, back on this thread tomorrow!
LL
Good post above and I had more to say but I am too d*m tired to remember it all because I need a procrit or epogen shot and can't have one, LOL!!
You do seem to have really good Dr.'s, care in your tx, problems and thank God as all your dealing with in this.
While I have a great Dr., (and my sides, labs are still doable and nowhere near your problems), I am fast learning a trial is a trial! Rules are rules and so on. A lot makes NO sense as when these trial drugs are out...they'd need all the rescue drugs than, right? I understand the reasoning, but yet.... I don't!
My Dr. did reduce 'outside of a clinical reason' before labs got back 2 weeks ago, but he knew what was up, and he was right.
Lizbo has to get the Hgb and the only way, in this, I think is reducing Riba.
I have wondered if they'd know if we snuck some in :} !!
I give up, going to sleep, back on this thread tomorrow!
LL
I guess a lot of docs, including the one at our clinic are dosing everyone with RIBA at top dose regardless.
It makes no sense to me, a little 106 lb woman is double saturated compared to a 230 lb hulk....but they are dosed the same.
I think smaller women should get blood drawn more often, since small frame means less marrow to make new blood, they are at greater risk.
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REALLY agree on that! Going from 800mg to 600mg, about 2 weeks now, I can get out of bed!
(some!!) We'll see if it changed the labs next week.
I tend to agree with, and the studies show, the higher dose at start of tx important, but should be more 'monitored' per weight.
LL
It makes no sense to me, a little 106 lb woman is double saturated compared to a 230 lb hulk....but they are dosed the same.
I think smaller women should get blood drawn more often, since small frame means less marrow to make new blood, they are at greater risk.
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REALLY agree on that! Going from 800mg to 600mg, about 2 weeks now, I can get out of bed!
(some!!) We'll see if it changed the labs next week.
I tend to agree with, and the studies show, the higher dose at start of tx important, but should be more 'monitored' per weight.
LL
I 'drew' the pegasy, but the dosing was to be every 2 weeks if Albumin. There was also a monthly dose study but, and not positive, I think they weren't doing anymore of the 1/4 arm (or what that is called!! The monthly!! D*m, getting major dose of the fog this week!!)
LL
LL
I have to agree, reduce now. The levels aren't going to go up without meds. and the same dose of Riba will continue to drop Hgb. (right??) and even IF it stabilized, still awfully low.Too close to the 'hold dose's' stage. And I know we can't get rescue drugs but don't know about transfusion!! I just figured yes as that's at the point of......need it now! Will be checking that in AM.
(Memory??? They must have told me as all my sons getting blood screens in case I needed their blood!) Time for bed!
LL
(Memory??? They must have told me as all my sons getting blood screens in case I needed their blood!) Time for bed!
LL
Dam*it...to tired to keep up with these post this week!!
Eyes crossing again and trying to read all this! Words not coming out right *&%$#!
Lizbo......if I am correct your in the Albumin trial and can't get rescue drugs, right?
I am in that also and going thru the Hgb drops, etc. and they did reduce Riba. Mine quite different tho as I got the Peg in the trial and am 2b, but same as in no Res. drugs, 'rules'.
Am NO pro in this, but when they reduced mine, many here posted, I read, researched on my own and bottom line -for me-came to if I drop anymore in Hgb it was-is-going to be 'hold dosing', or out of trial. My choice became reduce or risk the hold dose's, which I felt would be worse. Got labs today, will know next week if reducing has helped.
Tough choices when no rescue drugs and concerned as you down to 9 (and type 1in this). You said your RVR at week 12, did you get to find out if you were at week 4 (as per trial rules? I did get to 'find out' -and only in week 8). Again..NO PRO, but you are very small, 5 pills would be 1000mg (?). I'm 125ish and on 600 now, but whole different deal with geno 2 there also.
In the trial tx the risk of being taken off and/or holding dose's is a huge concern. And knowing the Riba is causing the drops....what to do???
A question for the 'pro's'.....heard much on my size, Riba with geno 2. Would this apply to Lizbo with geno 1? With no rescue drugs, the lesser of 2 evils of reducing Riba or holding dose's would be reducing for her?
Really sorry, wish I could help more and hope you get this figured out and keep on tx and trial.
P.S. A few weeks ago I believe you were handling the albumin okay? (memory). How is that going?
LL
Eyes crossing again and trying to read all this! Words not coming out right *&%$#!
Lizbo......if I am correct your in the Albumin trial and can't get rescue drugs, right?
I am in that also and going thru the Hgb drops, etc. and they did reduce Riba. Mine quite different tho as I got the Peg in the trial and am 2b, but same as in no Res. drugs, 'rules'.
Am NO pro in this, but when they reduced mine, many here posted, I read, researched on my own and bottom line -for me-came to if I drop anymore in Hgb it was-is-going to be 'hold dosing', or out of trial. My choice became reduce or risk the hold dose's, which I felt would be worse. Got labs today, will know next week if reducing has helped.
Tough choices when no rescue drugs and concerned as you down to 9 (and type 1in this). You said your RVR at week 12, did you get to find out if you were at week 4 (as per trial rules? I did get to 'find out' -and only in week 8). Again..NO PRO, but you are very small, 5 pills would be 1000mg (?). I'm 125ish and on 600 now, but whole different deal with geno 2 there also.
In the trial tx the risk of being taken off and/or holding dose's is a huge concern. And knowing the Riba is causing the drops....what to do???
A question for the 'pro's'.....heard much on my size, Riba with geno 2. Would this apply to Lizbo with geno 1? With no rescue drugs, the lesser of 2 evils of reducing Riba or holding dose's would be reducing for her?
Really sorry, wish I could help more and hope you get this figured out and keep on tx and trial.
P.S. A few weeks ago I believe you were handling the albumin okay? (memory). How is that going?
LL
The latest news on ribavirin is that it's importance to SVR has been way underestimated. You need it at the end of treatment as well as the beginning. I hate to see anyone have to reduce that. And while EPO does take time to work, aranesp is much faster if the patient's insurance will pay. And it is only dosed every 2-3 weeks.
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