Aa
fishdics consults-interesting
OK, everyone in the area of Albuquerque, Dr. Arora is the real mccoy. I put 11 years of labwork into a spreadsheet, my list of questions, and this is the skinny. Just to update those that don't remember, baseline 2,890,000 12 week was 38,700. His resident said "thats close enough", and I was thinking HUH UH< I have read the literature... Dr. came in with two students, and said. You failed to achieve a 2 log drop. If you continue the current course, you have a 5% or less chance of SVR. However, it may be that you are not a true nonresponder, because your hemoglobin has remained virtually unchanged, which tells me you are one of less than 5% of patients that hypermetabolize ribavarin. ( he has conducted 17 clinical trials with ribavarin) Essentially, you are on monotherapy. Options: increase ribavarin, 6 weeks at 1400, then up to 1600 for another 6 weeks, redo the PCR. If you are undetectible at the 12 week, you have a 65% chance of SVR. If you fail to hit undetectible, then stop the treatment. If I am undetecitible, my 48 weeks starts today. If I stop, and start again in 6 months, you start out with the same odds as this time (I wondered about that). He also said that he has a VX-950 trial coming up for....... nonresponders. You have to have failed to achieve a 2 log drop, and failed to hit undetectible at 24 weeks. Starts in 6 months or a year. So trip was well worth it. Cops came and hauled the crazy uncle off while I was gone, man, I'm a making progress. Thanks for all your well wishes, I could feel the vibes...
OK, I originally weighed 238 lbs, lost 58 lbs to start treatment, I'm 5.6. I am now on the cusp between BMI index of obese and overweight, technically "overweight", bmi 29. But that said, if you follow obesity research, it appears that you never technically lose the fat cells, they just shrink and expand. Don't know if that is real or bullhockey, but its probably not good in reference to clearing the virus.
strator, I'm a telling ya ichthamol is the sh!t. Looks and smells like axle grease, but it will undo a boil in 24 hours, without pain... my son called me into the bathroom a couple of years ago and said "I want you to look at this"... and started unzipping his pants, and of course I said, I know what that looks like.. and he said NO, mom, at this... and he had a huge boil/ingrown hair/ pimple,, it had been driving him crazy for a week (obviously if he was hard up (no pun intended) enough to bare his all to his mom..) 12 hours later, he acknowledged I was a god among women..
Thanks for all the brain amplification going on, it does present some interesting food for thought...
strator, I'm a telling ya ichthamol is the sh!t. Looks and smells like axle grease, but it will undo a boil in 24 hours, without pain... my son called me into the bathroom a couple of years ago and said "I want you to look at this"... and started unzipping his pants, and of course I said, I know what that looks like.. and he said NO, mom, at this... and he had a huge boil/ingrown hair/ pimple,, it had been driving him crazy for a week (obviously if he was hard up (no pun intended) enough to bare his all to his mom..) 12 hours later, he acknowledged I was a god among women..
Thanks for all the brain amplification going on, it does present some interesting food for thought...
Yay! you are undetectable! I hope that means I am too (wont find out until end of august)
Winter is great here. I found it hard when I started Tx in summer. Breathing in that hot desert air didnt help my dry mouth and eyes. and those hot nights exacerberated my insomnia. Now it is winter I keep warm, sleep heaps and dont feel so bad that i am a recluse.
Winter is great here. I found it hard when I started Tx in summer. Breathing in that hot desert air didnt help my dry mouth and eyes. and those hot nights exacerberated my insomnia. Now it is winter I keep warm, sleep heaps and dont feel so bad that i am a recluse.
Still pluggin along lioness, went undetecable on a <600 pcr test from mayo medical lab. Could still have a few bugs but don't know for sure.
I ha d a few nightmares when I started tx but that kinda went away, at least for now. Winter there bad lioness?
I ha d a few nightmares when I started tx but that kinda went away, at least for now. Winter there bad lioness?
Kalio says: Exactly, but if the riba isn't inducing anemia at this level, should I increase it even more or can that cause other health consequences. Or is it that my body will aways throw off the riba and not go medically anemic?
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That's sort of what I hoped Fishdoc would ask her doctor, if you read back at some of my comments. However, the feeling I have is that the answers at this point are somewhat conjecture.
Putting that aside, I think the other important barometer in your case would be how fast your ridding yourself of the virus. I don't remember what happened first time, but hopefully you're taking frequent and sensitive viral load tests this time so you can get a better indication how things are working -- both to cheer you on and help with an EOT point if responding; or, to help you cut losses if not responding.
I also forgot if you're seeing a hepatologist or a gastro? But if the latter, maybe Fishdoc's experience will motivate you into seeking the opinion of someone in the forefront of hep c research and treatment. Notice how this guy works out of the box and picked up stuff that none of us here did -- even something his residents missed. Keep in mind, however, he had the benefit of Fishdoc's complete medical records in front of him, which we do not here.
All the best!
-- Jim
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That's sort of what I hoped Fishdoc would ask her doctor, if you read back at some of my comments. However, the feeling I have is that the answers at this point are somewhat conjecture.
Putting that aside, I think the other important barometer in your case would be how fast your ridding yourself of the virus. I don't remember what happened first time, but hopefully you're taking frequent and sensitive viral load tests this time so you can get a better indication how things are working -- both to cheer you on and help with an EOT point if responding; or, to help you cut losses if not responding.
I also forgot if you're seeing a hepatologist or a gastro? But if the latter, maybe Fishdoc's experience will motivate you into seeking the opinion of someone in the forefront of hep c research and treatment. Notice how this guy works out of the box and picked up stuff that none of us here did -- even something his residents missed. Keep in mind, however, he had the benefit of Fishdoc's complete medical records in front of him, which we do not here.
All the best!
-- Jim
Obesity is a medical term, you therefore don't have to look "obsese" to be obsese in the medical sense. Obsesity is also an independent negative predictor of SVR and something you might want to consider should you not clear this time.
Regarding 3X a day riba dosing. I don't think it will do any harm -- it may even do some good -- as long as you take it with enough food and fat. However, based on what I read, I don't think it's necessary at the levels you're taking riba which I believe is 1600 mg/day. I don't have the other study in front of me -- actually don't have it -- but I believe it has been stated that 3X a day riba dosing is when you take over 2000 mg/day, but not sure.
As far as folks not feeling the difference when they up the riba, not sure this is necessarily a good thing. Sometimes what people "feel" are the sides of anemia -- and going back to what Fishdoc's doctor says (as well as the Sweeds) anemia may be a positive predictor for SVR in the sense that it's a crude barometer of riba entering the system.
-- Jim
Regarding 3X a day riba dosing. I don't think it will do any harm -- it may even do some good -- as long as you take it with enough food and fat. However, based on what I read, I don't think it's necessary at the levels you're taking riba which I believe is 1600 mg/day. I don't have the other study in front of me -- actually don't have it -- but I believe it has been stated that 3X a day riba dosing is when you take over 2000 mg/day, but not sure.
As far as folks not feeling the difference when they up the riba, not sure this is necessarily a good thing. Sometimes what people "feel" are the sides of anemia -- and going back to what Fishdoc's doctor says (as well as the Sweeds) anemia may be a positive predictor for SVR in the sense that it's a crude barometer of riba entering the system.
-- Jim
That sounds wonderful and Cheers to New Beginnings! Its nice when the dr pulls out of traditional cookie cutter tx and pull their sleeves up and figure out a new stragedy! Best Wishes to you!
Yep, good job at clarification...all the confusing things in life, I got this one. thanks
Paris says: I am concerned about your comment...How do you 'flag someone?"
I believe I understand you connection to get his attention, but is there a place you go to ..to alert someone of a thread that might be of interest?
S
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The software here is pretty, ah, errr...basic :) Other discussion groups have ways to notify people but not here.
So unless you happen to have someone's email address, the only way to get their attentiont that I know of is to put their name in the "comment" line. That's what I meant by "flagging" someone. Hope this clarifies.
-- Jim
I believe I understand you connection to get his attention, but is there a place you go to ..to alert someone of a thread that might be of interest?
S
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The software here is pretty, ah, errr...basic :) Other discussion groups have ways to notify people but not here.
So unless you happen to have someone's email address, the only way to get their attentiont that I know of is to put their name in the "comment" line. That's what I meant by "flagging" someone. Hope this clarifies.
-- Jim
Hooray - came on looking for this post. So he did think it was a riba saturation problem. Well, howdy doody! I am excited about your new beginning. Now, unfortunately (probably) you will get to experience the wonderful world of anemia along with the rest of us. I am so glad you have a plan. Is your local doc on track with this (I know you like him) so you can get your labs locally or do you goto Albuquerque for everything. I am especially excited about you being on track for a trial as a fail safe. My doc is letting me extend for 8 weeks. My new end date is Aug 4th.
Later, kath
Later, kath
Anyone remembers one of the presentations at the FCO AASLD conference that dealt with using Procrit at the onset of tx, which yielded higher SVR rates? How would anyone in a study like the one mentioned, know of hypermetabolization of Riba if Procrit is used from the begining?
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I remember the study and a number of docs have been using that strategy for some time. You make a good point but Fishdoc's doc suggested that hypermetabolism of riba only affects 5% of people who take riba. Therefore, the advantages of pre-dosing may statiscally outweigh the disadvantages of missing the 5% who hypermetabolise. Also, maybe using current (or future) data they can come up with a predictable hgb curve with different levels of Procrit that can differentiate betwen normal riba absorption and hypermetabolized absorption.
Speaking of studies, remember the one that pre-doses riba before the first shot of Peg -- I believe they start pre-dosing a couple of weeks early to get riba levels up. If I ever had to treat again with current drugs -- hopefully NOT -- I'd consider discussing with my doc pre-dosing riba while using Procrit prior to treatment. Kind of a double whammy approach. My more likely scenario should I relapse will be to stay glued to the Vertex trials and jump in when appropriate.
-- Jim
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I remember the study and a number of docs have been using that strategy for some time. You make a good point but Fishdoc's doc suggested that hypermetabolism of riba only affects 5% of people who take riba. Therefore, the advantages of pre-dosing may statiscally outweigh the disadvantages of missing the 5% who hypermetabolise. Also, maybe using current (or future) data they can come up with a predictable hgb curve with different levels of Procrit that can differentiate betwen normal riba absorption and hypermetabolized absorption.
Speaking of studies, remember the one that pre-doses riba before the first shot of Peg -- I believe they start pre-dosing a couple of weeks early to get riba levels up. If I ever had to treat again with current drugs -- hopefully NOT -- I'd consider discussing with my doc pre-dosing riba while using Procrit prior to treatment. Kind of a double whammy approach. My more likely scenario should I relapse will be to stay glued to the Vertex trials and jump in when appropriate.
-- Jim
I am concerned about your comment...How do you 'flag someone?"
I believe I understand you connection to get his attention, but is there a place you go to ..to alert someone of a thread that might be of interest?
Still trying to figure out the forum
I wish there was a way to get to the forum and hit a button...and see "newest posts since last visit'
I believe I understand you connection to get his attention, but is there a place you go to ..to alert someone of a thread that might be of interest?
Still trying to figure out the forum
I wish there was a way to get to the forum and hit a button...and see "newest posts since last visit'
Fish says: I specifically asked if I should take it more often, and he said no
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At 1400 mg/day or even 1600, I'm guessing that more frequent dosing wouldn't matter until you get over the 2000mg/day mark which I don't think your doctor will take you. Plus other studies show that riba is absorbed better with meals with fat so taking it with your biggest meals of the day may have some advantages as well.
Another subject, and please don't take this the wrong way, but you did infer in a recent post that you were overweight although you didn't specify how much and I'm not really asking. But in case, being very overweight has been associated with a lower chance of SVR. In fact, some doctors have their patients lose weight prior to treatment to give them a better chance. Bronx, for example, I believe was told to lose close to 30-40 lbs. For now, this is probably academic since you decided not to take a break before upping the riba, but should things not work out -- you might consider getting down to your ideal weight before re-treating.
-- Jim
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At 1400 mg/day or even 1600, I'm guessing that more frequent dosing wouldn't matter until you get over the 2000mg/day mark which I don't think your doctor will take you. Plus other studies show that riba is absorbed better with meals with fat so taking it with your biggest meals of the day may have some advantages as well.
Another subject, and please don't take this the wrong way, but you did infer in a recent post that you were overweight although you didn't specify how much and I'm not really asking. But in case, being very overweight has been associated with a lower chance of SVR. In fact, some doctors have their patients lose weight prior to treatment to give them a better chance. Bronx, for example, I believe was told to lose close to 30-40 lbs. For now, this is probably academic since you decided not to take a break before upping the riba, but should things not work out -- you might consider getting down to your ideal weight before re-treating.
-- Jim
anyone remembers one of the presentations at the FCO AASLD conference that dealt with using Procrit at the onset of tx, which yielded higher SVR rates? How would anyone in a study like the one mentioned, know of hypermetabolization of Riba if Procrit is used from the begining? I guess none of the subjects experienced that situation, given the high SVR results. I can't believe how complicated this treatment can be!
My mom told me a story when she was little she got a piece of glass in her hand well it kept moving deeper into her skin and was getting infected really bad infected , my great grandma put the salve on her infection and within 2 days it had pulled the glass right out of her hand and she was healed, must be good stuff.......
I believe it takes about approx 2-weeks for a change in riba dosage to reflect itself in a change of hemoglobin levels. So, personally I'd ask for a hemoglobin test in another two weeks -- and if the hemoglobin hasn't moved downward much, I'd speak to him about upping the dosage even more so you don't have a repeat of last time, and see what he says. Anyway, I'm calling it a night. Have a great weekend and glad you found someone who is knowledgeable and will work out of the box with you.
-- Jim
-- Jim
sounds like yu got some answers,hope this does the trick and you lose the vrus like the crazy ol uncle...Goodluck
No doubt fishdoc , the 1st rd the riba wasn't dosed high enough. From the post I've seen, others whose hmg dropped from base , got anemic , seemed to have the best results. In other words , the more redblood it's killin, the more hcv goin down too. How close is that clinical study the new consult mentioned?
You know me cat, I wake up in the middle of the nite , everynite . Riba really speeds my a-- up. Straight jacket time dude, hmg is 10.4 , 5 pts down from base. They put me on paxil thursday , the men in the white coats said it would settle the dyce down. Shot 13 is chickin wiggin me right now too. Got arond 7 hours a snooze , so I'm all ribbaed up, guy , but it feels like I built some blood by restin. Me alt is 28 and the ast is 30 , ggt came down ta 112 from 180 sumthin. Riba diba daba dooooooooo!!!!!!!!!!
Well, I'm up too. It's 4AM and I'm up, only 3hrs sleep again. Wonder if it's the new blood.
Dyce you have a point, that's what I was trying to figure out. From other posts those that had their HGB drop from base line seem to have the best results because the more red blood cells it's killing the more HCV bugs are being killed, so why would it be a different approach for fishdoc or the 5% or less of the population with HCV who HGB doesn't drop from baseline.
BEAGLE
Dyce you have a point, that's what I was trying to figure out. From other posts those that had their HGB drop from base line seem to have the best results because the more red blood cells it's killing the more HCV bugs are being killed, so why would it be a different approach for fishdoc or the 5% or less of the population with HCV who HGB doesn't drop from baseline.
BEAGLE
As you all know, I'm on the 8 Riba's a day. I haven't been able to tell a whole lot of difference in how I feel compared to 4 a day. As far as my hemoglobin/RBC, my doctor just put me on Procrit and has been following my labs closely. So, that hasn't been an issue either.
Susan
Susan
he said six months or a year, so perfect timing to give me another 3 months pass or fail.....of course, now I'm wondering...if 6 of the damm things weren't helping, why would adding one more help... or two more..my mind is my worst enemy at times....how you doing? Yeah, had a big stink at home-Uncle saw our suitcase, Bill was taking me to the appt. and we were going to stop ata motel up in the mountains, and just spend some time this morning hanging out in the cool hills. He was wanting us to take him to relatives in phoenix, so after we left, he had a huge fit at my mom....who is 78... a true bully. He took off walking down the road, cops brought him home, and said he was dangerous, and he is sitting in a mental care facility this morning, which is where he should have been right from the start....
You got your hands full with with your uncle, at least when you get home he won't be there.
I agree with you, if 6 didn't work why would adding just 1 more at this point make a differents. I was always lead to believe that the first 3 months of treating was the most important time in the treatment stage. Like dyce pointed out that low HGB durning tx shows that the virus is being killed at least that's what some studies have shown. I got to say I'm confused,but these days it doesn't take much to confuse me.
BEAGLE
I agree with you, if 6 didn't work why would adding just 1 more at this point make a differents. I was always lead to believe that the first 3 months of treating was the most important time in the treatment stage. Like dyce pointed out that low HGB durning tx shows that the virus is being killed at least that's what some studies have shown. I got to say I'm confused,but these days it doesn't take much to confuse me.
BEAGLE
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