Aa
Haven't visited the board in quite some time but....
was wondering if people here have begun to add Alinia to standard treatment? I did a few years back and it worked. I had treated 3 times before to no avail but the 4th time with Alinia added it worked. just wanted to pass this info along. Ask your docs about it. I was a guinea pig when i tried it and probably one of the first in this country to use it.
"As I see it, the stakes are too high to add unknowns with DAA's, especially when there is no history showing it will enhance treatment but a definate variable that.could be a factor in failure."
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Which stakes are you referring to as too high? Failure? As in liver failure?
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Which stakes are you referring to as too high? Failure? As in liver failure?
"certainly a subject worth discussing with a certified Hepatologist/transplant specialist"
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Exactly what we were discussing amongst each other, or so I thought. It would be pretty difficult for anyone to add any of these agents without getting clearance from appropriate medical providers, and it seemed pretty clear that WAS the context of the discussion: the responses we got when inquiring with experts in the field.
"May be the difference between life and death still doesn't make it so....
... the dynamics of treatment change with the addition of a DAA..."
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True on both counts, but may be the dynamic between life and death makes it so that the difference between gastro problems and really bad gastro problems doesn't add up to a hill of beans.
Certainly no-self proclaimed expert, but both my husband and his hepatologist can vouch for Alinia's efficacy and tolerability in terms of adverse events for at least one cirrhotic patient with liver cancer for a duration of 130 weeks.
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Exactly what we were discussing amongst each other, or so I thought. It would be pretty difficult for anyone to add any of these agents without getting clearance from appropriate medical providers, and it seemed pretty clear that WAS the context of the discussion: the responses we got when inquiring with experts in the field.
"May be the difference between life and death still doesn't make it so....
... the dynamics of treatment change with the addition of a DAA..."
-----------------------------
True on both counts, but may be the dynamic between life and death makes it so that the difference between gastro problems and really bad gastro problems doesn't add up to a hill of beans.
Certainly no-self proclaimed expert, but both my husband and his hepatologist can vouch for Alinia's efficacy and tolerability in terms of adverse events for at least one cirrhotic patient with liver cancer for a duration of 130 weeks.
Evangelin said:" but it probably would increase his chances of Teleprevir getting him an SVR".
That is what I based my commentary on, however, Evangelin went on to say she didn't think she explained herself sufficiently.
What I would like to see are statistics relating directly to Alinia and the DAA's before suggesting anyone add it to triple therapy which has been my point all along.
That is what I based my commentary on, however, Evangelin went on to say she didn't think she explained herself sufficiently.
What I would like to see are statistics relating directly to Alinia and the DAA's before suggesting anyone add it to triple therapy which has been my point all along.
May be the difference between life and death still doesn't make it so. As stated above, buyer beware but certainly a subject worth discussing with a certified Hepatologist/transplant specialist regarding the efficacy or potential adverse side effects of Alinia in those with cirrhosis or liver cancer. However, if one truly believes the benefits of Alinia outweigh the risk even without any established data saying yay or nay, that in my opinion makes it a moot point as well.
With the current standard of care gastro problems occur in many and it appears they can become more severe with Boceprevir. Adding Alinia could quite possibly cause such severe gastro problems that it would prevent the individual from continuing treatment. Alinia could be discontinued but having to stop treatment or dose reduce because of an adjunct, even if it's only for a short period of time may be the difference between acheiving SVR or not. As I see it, the stakes are too high to add unknowns with DAA's, especially when there is no history showing it will enhance treatment but a definate variable that.could be a factor in failure.
The dynamics of treatment change with the addition of a DAA, especially for those with cirrhosis. When it comes to adding any other agent I would personally feel the need for substantial proof, not just hearsay from self proclaimed experts.
With the current standard of care gastro problems occur in many and it appears they can become more severe with Boceprevir. Adding Alinia could quite possibly cause such severe gastro problems that it would prevent the individual from continuing treatment. Alinia could be discontinued but having to stop treatment or dose reduce because of an adjunct, even if it's only for a short period of time may be the difference between acheiving SVR or not. As I see it, the stakes are too high to add unknowns with DAA's, especially when there is no history showing it will enhance treatment but a definate variable that.could be a factor in failure.
The dynamics of treatment change with the addition of a DAA, especially for those with cirrhosis. When it comes to adding any other agent I would personally feel the need for substantial proof, not just hearsay from self proclaimed experts.
stef2011-
Joe took a probiotic called Culturelle while using the Alinia with SOC last time but unfortunately, it didn't stop the gastro trouble. He had been taking Culturelle for many months prior to starting the Alinia too. Joe is generally quite sick on TX anyway so it is pretty hard to say which drug is causing you which problem though. What you described above sounds very interesting. Thanks for calling my attention to it.
DoraExplora-
I probably didn't state it clearly enough but I wasn't meaning I would add the Alinia to Joe's TX without the Dr.'s consent. I was just enquiring of his Dr., whether or not it would be do-able because Joe has proven multiple times to be a poor responder to the interferon. We already know from his last TX attempt,that Alinia increased his response because the first two, without Alinia, didn't even get him a 2 log drop by 12 weeks. The Alinia did, but he still was unable to become nondetectable, even after 15 months straight. It is likely going to take more than one DAA to get the job done but I just had hoped that adding the Alinia to the PI might make the interferon response good enough to mop up the remaining virons after the Teleprevir. Joe doesn't qualify for any trials because of cirrhosis, low hgb and low platelets.. Maybe they will found out Alinia is compatable with the Teleprevir. We will see.
Eureka- What a wonderful support you are for your husband. You've been at this a long time now. There is only one place I know of to derive that kind of strength.
Remembering you,
Ev
Joe took a probiotic called Culturelle while using the Alinia with SOC last time but unfortunately, it didn't stop the gastro trouble. He had been taking Culturelle for many months prior to starting the Alinia too. Joe is generally quite sick on TX anyway so it is pretty hard to say which drug is causing you which problem though. What you described above sounds very interesting. Thanks for calling my attention to it.
DoraExplora-
I probably didn't state it clearly enough but I wasn't meaning I would add the Alinia to Joe's TX without the Dr.'s consent. I was just enquiring of his Dr., whether or not it would be do-able because Joe has proven multiple times to be a poor responder to the interferon. We already know from his last TX attempt,that Alinia increased his response because the first two, without Alinia, didn't even get him a 2 log drop by 12 weeks. The Alinia did, but he still was unable to become nondetectable, even after 15 months straight. It is likely going to take more than one DAA to get the job done but I just had hoped that adding the Alinia to the PI might make the interferon response good enough to mop up the remaining virons after the Teleprevir. Joe doesn't qualify for any trials because of cirrhosis, low hgb and low platelets.. Maybe they will found out Alinia is compatable with the Teleprevir. We will see.
Eureka- What a wonderful support you are for your husband. You've been at this a long time now. There is only one place I know of to derive that kind of strength.
Remembering you,
Ev
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