Aa
merryBe
Please check out the slide set by Dr. Mitchell Shiffman released today at Clinical Care Options.
clinicaloptions.com
clinicaloptions.com
I don't remember that thread now, so perhaps a more accurate statement would have been that I told you that your medical team should have said something to you at week 4. You might re-read my response to you a month ago, here:
http://www.medhelp.org/posts/show/359691
Also, to correct what you're saying, you did not have a one-log drop at week 4, at least according to your post in the thread just mentioned.
In that thread, you state your pre-treatment viral load as 1.4 million and your week 4 viral load as 300,000. That is less than a one log drop. A one-log drop would have been 140,000 IU/ml.
Don't really have too much to add going forward from my last post, other than again, I'm pretty sure you will find out that your doctor really didn't understand what the article really said, and frankly, he should do more than "skim" an article where an important
tx decision may be concerned.
You have a real fighting spirit and I really do feel for you. I pray that your week 12 test will surprise us all.
All the best,
-- Jim
http://www.medhelp.org/posts/show/359691
Also, to correct what you're saying, you did not have a one-log drop at week 4, at least according to your post in the thread just mentioned.
In that thread, you state your pre-treatment viral load as 1.4 million and your week 4 viral load as 300,000. That is less than a one log drop. A one-log drop would have been 140,000 IU/ml.
Don't really have too much to add going forward from my last post, other than again, I'm pretty sure you will find out that your doctor really didn't understand what the article really said, and frankly, he should do more than "skim" an article where an important
tx decision may be concerned.
You have a real fighting spirit and I really do feel for you. I pray that your week 12 test will surprise us all.
All the best,
-- Jim
Jim, at 4 weeks I started a thread called "1 log drop at 4 wks"....woo woo I'll take it!!
and as I recall no one in here said one word to me, like that's not enough, or you need to talk to the doc or anything,....if someone had told me to get on that, believe me I would have...
all that doc Kent Benner said was...you are doing fine..
and come back in a month. So my assumtion, based on him, and no reaction in here was, well, "I guess I'm just a slow responder".....maybe I just posted on a day everyone was resting..? : 0
I remember thinking it was weird no one congratulated me in here....maybe they just didn't want to be the bearer of bad news...who knows...water under the bridge.
the ONLY reason I found out that I wasn't doing good is because I happened to get that infection and had to go in a little early....and you know what has ensued since. The VL had gone back up some, etc etc.
obviously the clinic RN excused everyone from alerting me at their end...and were not only reluctant but insistant that no changes would help!!.
However, as you pointed out I still need to see the article...as Jim pointed out, having someone quote it to me, who HIMself admitted he hadn't really read only skimmed it (due to his time constraints).....doesn't really help me in the decision process either.
If nothing changes in the PCR that I'll draw on the 26th, then It is my intention to just wean
myself off the INF
perhaps taking half a shot each week for 2 weeks...or what would you recommend??
and quit the Riba cold turkey is OK as per reading in here, right?
live to fight another day, believe me not a glutton for punishment here.
My only other choice would be to defy the docs and up my own dosing just because I could now with a 3 month supply...
and suffer the benefits or consequences if and or when they do find out....which without blood work would be stupider than hell...and so they would find out...which would basically disqualify me for any further treatments, being non-compliant with doc instructions.
My other option is to find someone to draw, freeze and mail my serum to Sweden...
just to discover how low my absorption may have been all this time.
Since I had many more Riba symptoms the first month, I wonder if when the symptoms all went away is when I stopped absorbing it well, for whatever reason.
Quest will not do this draw and mail my blood, already checked.
So does anybody have suggestions for how to wean off the INF dosage wise...
because my spleen is already inflammed and enlarged, I want to cause the least backlash possible.
I also think, because I had no pituitary function for years is why I gained a lot of weight.
(in rat experiments rats with no HGH grow to 3 times the size of normal rats on the exact same calorie count and excersise level).
This excess weight may be part of why they don't consider my chances good.
However, since going on the HGH i can now lose weight on 1200 calories a day, even though before I never could. So now I've dropped 40 lbs, and will get the other 40 off in another year I'm sure.
So, this should at least then give me a shot at retreating, which being too protective at this point never will.
this might also give me time to at least consider at stint in another city if I cannot find a flexible doc or good trial here.
It was a little impossible when at nine wks in tx folks said, you should have done something at 4 weeks.......and I'm dealing with "authorities" who basically have done it long enough to have their minds made up.....they've crunched the numbers....and there aren't enough exceptions to make adjustments is not only the felling I got, but the very core of their belief system.
Frankly in a field that despite infentesimal research funding is learning by leaps and bounds, it seems odd to have seen such resistance to anything but SOC.
However, assuming I might go on to become a liver transplant candidate at some point,
I have to assume that if I do not adhere to the Portland docs dosing restrictions and requirements that in and of itself may classify me a rouge and not a good candidate, even IF I was motivated by the latest research. Am I correct, if I mess with my doses without the Pope's blessing I'm skirewd right?
Mary
and as I recall no one in here said one word to me, like that's not enough, or you need to talk to the doc or anything,....if someone had told me to get on that, believe me I would have...
all that doc Kent Benner said was...you are doing fine..
and come back in a month. So my assumtion, based on him, and no reaction in here was, well, "I guess I'm just a slow responder".....maybe I just posted on a day everyone was resting..? : 0
I remember thinking it was weird no one congratulated me in here....maybe they just didn't want to be the bearer of bad news...who knows...water under the bridge.
the ONLY reason I found out that I wasn't doing good is because I happened to get that infection and had to go in a little early....and you know what has ensued since. The VL had gone back up some, etc etc.
obviously the clinic RN excused everyone from alerting me at their end...and were not only reluctant but insistant that no changes would help!!.
However, as you pointed out I still need to see the article...as Jim pointed out, having someone quote it to me, who HIMself admitted he hadn't really read only skimmed it (due to his time constraints).....doesn't really help me in the decision process either.
If nothing changes in the PCR that I'll draw on the 26th, then It is my intention to just wean
myself off the INF
perhaps taking half a shot each week for 2 weeks...or what would you recommend??
and quit the Riba cold turkey is OK as per reading in here, right?
live to fight another day, believe me not a glutton for punishment here.
My only other choice would be to defy the docs and up my own dosing just because I could now with a 3 month supply...
and suffer the benefits or consequences if and or when they do find out....which without blood work would be stupider than hell...and so they would find out...which would basically disqualify me for any further treatments, being non-compliant with doc instructions.
My other option is to find someone to draw, freeze and mail my serum to Sweden...
just to discover how low my absorption may have been all this time.
Since I had many more Riba symptoms the first month, I wonder if when the symptoms all went away is when I stopped absorbing it well, for whatever reason.
Quest will not do this draw and mail my blood, already checked.
So does anybody have suggestions for how to wean off the INF dosage wise...
because my spleen is already inflammed and enlarged, I want to cause the least backlash possible.
I also think, because I had no pituitary function for years is why I gained a lot of weight.
(in rat experiments rats with no HGH grow to 3 times the size of normal rats on the exact same calorie count and excersise level).
This excess weight may be part of why they don't consider my chances good.
However, since going on the HGH i can now lose weight on 1200 calories a day, even though before I never could. So now I've dropped 40 lbs, and will get the other 40 off in another year I'm sure.
So, this should at least then give me a shot at retreating, which being too protective at this point never will.
this might also give me time to at least consider at stint in another city if I cannot find a flexible doc or good trial here.
It was a little impossible when at nine wks in tx folks said, you should have done something at 4 weeks.......and I'm dealing with "authorities" who basically have done it long enough to have their minds made up.....they've crunched the numbers....and there aren't enough exceptions to make adjustments is not only the felling I got, but the very core of their belief system.
Frankly in a field that despite infentesimal research funding is learning by leaps and bounds, it seems odd to have seen such resistance to anything but SOC.
However, assuming I might go on to become a liver transplant candidate at some point,
I have to assume that if I do not adhere to the Portland docs dosing restrictions and requirements that in and of itself may classify me a rouge and not a good candidate, even IF I was motivated by the latest research. Am I correct, if I mess with my doses without the Pope's blessing I'm skirewd right?
Mary
Well put from someone that has been there. If you have time and inclination, you might want to check out this thread. I believe St George would be going on his 4th try. Maybe he should speak to someone like Shiffman.
http://www.medhelp.org/posts/show/381390
-- Jim
http://www.medhelp.org/posts/show/381390
-- Jim
MB, I can feel your pain. Been there, done that. I did so much interferon/riba, so many times because I didn't know (they didn't know), that null responders wouldn't respond no matter what you do. All it got me was some pretty bad bouts of autoimmune arthritis and a neutrophil count of 9. You don't want to go there honey. Please believe me on that. That will kill you qicker than the hep will.
The bottom line here, is I totally agree with what Shiffman has said, as well as Jim. Some of us will need better drugs to couple with those PI's.
Antibiotics should not interfere with SOC either. In fact both times I ended up with infections and had to take Cipro or one of the other antibiotics, I had a subsequent big, for me, reduction in VL. In fact I know someone who got their only undetected on Leva quin. Very odd.
The bottom line here, is I totally agree with what Shiffman has said, as well as Jim. Some of us will need better drugs to couple with those PI's.
Antibiotics should not interfere with SOC either. In fact both times I ended up with infections and had to take Cipro or one of the other antibiotics, I had a subsequent big, for me, reduction in VL. In fact I know someone who got their only undetected on Leva quin. Very odd.
MB: OK, I get that you don't think it will happen,
----------------------------------------------------------------------
Let me tighten that up a little.
First, as I mentioned before, in spite of the fact that you had less than a one-log drop by week 10, I thought it reasonable to do a few more weeks and do a week 12 PCR. Did you do that yet?
Now, if you're UND at week 12, or have at least a two log drop, then I also think it reasonable to continue on to week 24, with perhaps some medication tweaks to get you UND as soon as possible. In fact, I believe I suggested you do this at week 4, and the last time you posted at week 10.
What I am leery -- not sure if that's the best word -- but what I am lerry about is how far you should continue -- if at all -- past week 12, if you do not have a two log drop, because that would label you a non-responder, not a partial responder. And if in fact, you still have a one-log (or less) drop at week 12, well, that's really no response at all.
Now, I understand your argument that maybe some factors played into your non-response such as your bacterial infections or now the fiber thing. Personally, I wouldn't bet the house on either, but I'm not a doctor and I'm not a seer, and it's your liver, not my liver.
What I do believe however, is if you do indeed intend to enter very uncharted waters -- assuming less than a two-log drop at week 12 -- then you want to carefully examine your reasoning and you want to carefully monitor your viral load moving forward to see if any treatment adjustments are actually working.
Getting hold of that article would be part of "examining your reasoning" because I don't think it says what you think it says. And WEEKLY viral load test from here on out would be very reasonable IMO in terms of monitoring your viral load progress per any changes in treatment protocol.
Asssuming you keep going, at some point you will have to make a decision as to whether or not to continue based on these viral load tests.
All the best,
-- Jim
----------------------------------------------------------------------
Let me tighten that up a little.
First, as I mentioned before, in spite of the fact that you had less than a one-log drop by week 10, I thought it reasonable to do a few more weeks and do a week 12 PCR. Did you do that yet?
Now, if you're UND at week 12, or have at least a two log drop, then I also think it reasonable to continue on to week 24, with perhaps some medication tweaks to get you UND as soon as possible. In fact, I believe I suggested you do this at week 4, and the last time you posted at week 10.
What I am leery -- not sure if that's the best word -- but what I am lerry about is how far you should continue -- if at all -- past week 12, if you do not have a two log drop, because that would label you a non-responder, not a partial responder. And if in fact, you still have a one-log (or less) drop at week 12, well, that's really no response at all.
Now, I understand your argument that maybe some factors played into your non-response such as your bacterial infections or now the fiber thing. Personally, I wouldn't bet the house on either, but I'm not a doctor and I'm not a seer, and it's your liver, not my liver.
What I do believe however, is if you do indeed intend to enter very uncharted waters -- assuming less than a two-log drop at week 12 -- then you want to carefully examine your reasoning and you want to carefully monitor your viral load moving forward to see if any treatment adjustments are actually working.
Getting hold of that article would be part of "examining your reasoning" because I don't think it says what you think it says. And WEEKLY viral load test from here on out would be very reasonable IMO in terms of monitoring your viral load progress per any changes in treatment protocol.
Asssuming you keep going, at some point you will have to make a decision as to whether or not to continue based on these viral load tests.
All the best,
-- Jim
OK, I get that you don't think it will happen, but now I have to add to the infection quotient the fact that I eat a ton of fiber, albeit with fat added for my riba meals, no one told me not to,
And I had been adding simethicone because again until todays thread, I had no idea this would interfere and with inflammed liver and spleen, any normal gas was causing real discomfort.
So now I have not one, not two, but 4 possible reasons my Riba absorption was compromised and/or my viral resistance got lower.
If you had all those variables Jim, are you still saying you would not give yourself a couple more weeks to see if things change??
I have a call into Shwartz for the article. Hoping to hear back soon!!
And I had been adding simethicone because again until todays thread, I had no idea this would interfere and with inflammed liver and spleen, any normal gas was causing real discomfort.
So now I have not one, not two, but 4 possible reasons my Riba absorption was compromised and/or my viral resistance got lower.
If you had all those variables Jim, are you still saying you would not give yourself a couple more weeks to see if things change??
I have a call into Shwartz for the article. Hoping to hear back soon!!
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