Aa
Some good news
Just came back from seeing my GI and received some good news for a change.
I get to keep my Gall Bladder. The polyps hadn’t changed so no need to worry about cancer - Yay.
Spoke to my Doc about retreating and he said he would take some convincing, so I gave him a doco I had written which contained large chunks from the following article from Clinical Care Options by ML Shiffman “Understanding HCV Nonresponse and Identifying Candidates for Retreatment” and now he his giving this some consideriation. He even downloaded the full article.
So now the wait begins again. Retreating in Australia aint that easy.
Probably not that easy anywhere when you have failed Peg Combo.
Now I should come up with a detailed plan (kinda have a high level plan) of how I want to retreat, especially the stop points. About the only things I have dismissed are Jim High doses of Riba and taking Pegasys every three days.
Wonder if I can find any detailed info on Alinia.
Been a good day, I’m pretty happy.
CS
I get to keep my Gall Bladder. The polyps hadn’t changed so no need to worry about cancer - Yay.
Spoke to my Doc about retreating and he said he would take some convincing, so I gave him a doco I had written which contained large chunks from the following article from Clinical Care Options by ML Shiffman “Understanding HCV Nonresponse and Identifying Candidates for Retreatment” and now he his giving this some consideriation. He even downloaded the full article.
So now the wait begins again. Retreating in Australia aint that easy.
Probably not that easy anywhere when you have failed Peg Combo.
Now I should come up with a detailed plan (kinda have a high level plan) of how I want to retreat, especially the stop points. About the only things I have dismissed are Jim High doses of Riba and taking Pegasys every three days.
Wonder if I can find any detailed info on Alinia.
Been a good day, I’m pretty happy.
CS
thank you for the referenced article, my file is getting full!!!! Hope not to need the info but still good to store.
glad you get to keep your GB, it's not the needless organ some say it is.
glad you get to keep your GB, it's not the needless organ some say it is.
So happy your doctor's visit went well, and that your doc is considering, and actually putting some thought into, retreating. It must be so frustrating to have gone through a failed tx without VL tests being done, which makes you unable to really evaluate what happened during tx. I would also want to give it another try with the full artillery next time.
This double-dosing the first 4 weeks intrigues me. So does predosing riba. Do you think you can get your doc to approve that? As you know, my ex is to participate in a study in January for geno 3 relapsers with weightbased riba and 48 weeks. (He does lurk here at Medhelp by the way, although he does not post.) We have some extra PegIntron laying around, it is tempting...
It is strange the way geno 3's are often treated: no viral load tests - neither before or during tx, no biopsies, no week 4 and/or 12 tests, fixed dosing... Even if that works for the majority, it sucks for those for whom it doesn't.
Have you/are you going to do a biopsy this time?
I am calling all the Interferon Goddess' powers to make you SVR next time. :)
Zazza
This double-dosing the first 4 weeks intrigues me. So does predosing riba. Do you think you can get your doc to approve that? As you know, my ex is to participate in a study in January for geno 3 relapsers with weightbased riba and 48 weeks. (He does lurk here at Medhelp by the way, although he does not post.) We have some extra PegIntron laying around, it is tempting...
It is strange the way geno 3's are often treated: no viral load tests - neither before or during tx, no biopsies, no week 4 and/or 12 tests, fixed dosing... Even if that works for the majority, it sucks for those for whom it doesn't.
Have you/are you going to do a biopsy this time?
I am calling all the Interferon Goddess' powers to make you SVR next time. :)
Zazza
Thanks for the info on Infergen. If I was going to use Infergen it would be as induction therapy, I'd run out of injection sites otherwise - lol.
I am hoping to get some info on Alinia out of the AASLD meeting, so as you say not long to wait.
Thanx for the offer on the studies, they would be much appreciated. there is no hurry as i want to get a biopsy, loose a few more Kgs and quit smoking before I Tx again. You know remove any host factors if i can.
Once again many thanx
CS
I am hoping to get some info on Alinia out of the AASLD meeting, so as you say not long to wait.
Thanx for the offer on the studies, they would be much appreciated. there is no hurry as i want to get a biopsy, loose a few more Kgs and quit smoking before I Tx again. You know remove any host factors if i can.
Once again many thanx
CS
Thanks, I'll look into the link. For some reason Alinia appeals to me probaly because of the accidental way its anti HCV properties were discovered. But until i find something a little more concrete on its efficacy I probably wont try and get it. Too much like trial and error for me.
CS
CS
Congrats on the great news concerning your gallbladder.I assume once the discovery is made showing polyps then routine checkups at regular intervals are used ?
Infergen is not all that it is cracked up to be. The only statistical advantage you can gain with the stuff is if you treat off-label with daily dosing with 15mcg and ribavirin. Unfortunately at those dosing levels the dropout rate is 30%. Add to that the increased risk for significant and sometimes irreversible damage, and the therapy loses some of its inital attractiveness.
This stuff has been around for at least 7 years (alfacon-1a) and never has shown itself to be any better than peg IFN even in a retreatment scenario,IF dosed at FDA approved levels. Infergen wouldn't have any market share at all if some exec didn't get the bright idea to redo all the trials and change the protocol to the treatment of non-responders and relapsers. This way it became the ONLY IFN that is FDA approved for the treatment of those two groups. And all importantly for insurance reasons, it states this on the label. I won't bore you with all of the details but it has a somewhat interesting course that it took to get it on the market. The second time, that is. The first time it failed miserably because it couldn't be bundled with riba.
There are a few retreatment studies out there that show improved SVR rates when the length is extended. There are a few studies that show increased efficacy at higher than recommended dosing levels, as well. If I run across any I'll send them to you. I never know when I'll have time to do such things so I can't make a solid committment as to time. You might try all the usual places:Pubmed,Medline, NIH,NIDDK,Elsevier,Wiley Interscience, gastroenterology.org, etc.
Everything I know about Alinia you could fit in a thimble. I read the Egyptian studies (all G4's I believe), I have checked the safety profile at recommended doses for its original purpose, and I know a few people who have tried it at dosing levels used in the Egyptian study. Out of the 4, one went UND at 12 weeks, but I have not heard yet about followup PCR. I know one whose vl went up by 12 week PCR. And I know two who quit because of sides , primarily GI upset, including diarrhea ironically. I talked about Alinia very briefly with my doc about a year ago and I was somewhat surprised that he entertained the possibility it could turn out to be useful in some way. This is coming from a widely respected researcher and a pioneer in the treatment of HCV-infected individuals. This is not an endorsement of its use, of course.
The Alinia STEALTH-1 nor the US STEALTH-2 data hasn't been fully released concerning safety profiles at the higher dosing levels used for HCV treatment.. I read that some interim data will be presented at the AASLD meeting early Nov which is almost here.
Regards,
Mr Liver
Infergen is not all that it is cracked up to be. The only statistical advantage you can gain with the stuff is if you treat off-label with daily dosing with 15mcg and ribavirin. Unfortunately at those dosing levels the dropout rate is 30%. Add to that the increased risk for significant and sometimes irreversible damage, and the therapy loses some of its inital attractiveness.
This stuff has been around for at least 7 years (alfacon-1a) and never has shown itself to be any better than peg IFN even in a retreatment scenario,IF dosed at FDA approved levels. Infergen wouldn't have any market share at all if some exec didn't get the bright idea to redo all the trials and change the protocol to the treatment of non-responders and relapsers. This way it became the ONLY IFN that is FDA approved for the treatment of those two groups. And all importantly for insurance reasons, it states this on the label. I won't bore you with all of the details but it has a somewhat interesting course that it took to get it on the market. The second time, that is. The first time it failed miserably because it couldn't be bundled with riba.
There are a few retreatment studies out there that show improved SVR rates when the length is extended. There are a few studies that show increased efficacy at higher than recommended dosing levels, as well. If I run across any I'll send them to you. I never know when I'll have time to do such things so I can't make a solid committment as to time. You might try all the usual places:Pubmed,Medline, NIH,NIDDK,Elsevier,Wiley Interscience, gastroenterology.org, etc.
Everything I know about Alinia you could fit in a thimble. I read the Egyptian studies (all G4's I believe), I have checked the safety profile at recommended doses for its original purpose, and I know a few people who have tried it at dosing levels used in the Egyptian study. Out of the 4, one went UND at 12 weeks, but I have not heard yet about followup PCR. I know one whose vl went up by 12 week PCR. And I know two who quit because of sides , primarily GI upset, including diarrhea ironically. I talked about Alinia very briefly with my doc about a year ago and I was somewhat surprised that he entertained the possibility it could turn out to be useful in some way. This is coming from a widely respected researcher and a pioneer in the treatment of HCV-infected individuals. This is not an endorsement of its use, of course.
The Alinia STEALTH-1 nor the US STEALTH-2 data hasn't been fully released concerning safety profiles at the higher dosing levels used for HCV treatment.. I read that some interim data will be presented at the AASLD meeting early Nov which is almost here.
Regards,
Mr Liver
Hi, I just hope you can come to some kind of comfort level on whatever you propose to do...we had some alinia threads on here awhile back that were pretty informative...a member here, Kitty face, had asked for a 3 month alinia trial monotherapy (hope she's okay with me talking about her again) that didn't work for her as far as getting rid of the virus, but she did it as a monotherapy which of course is a much tougher thing....one thing she said was the sides were mostly not there, how great is that if it will help with soc?....and that she was able to ask for the drug directly from the drug company as a financial hardship, and they shipped her a 3 months supply right away, no problem...I have heard you can get it from different Canadian online sites for a much reduced price as well...hope this helps...
Isn't one of the drug companies doing trials on an inhaled interferon? Might be something to look into.
Didn't know infergen was not available to you.Don't know your weight, but believe double dosing trials are also ongoing for those above 85kg by Schering I think..
Didn't know infergen was not available to you.Don't know your weight, but believe double dosing trials are also ongoing for those above 85kg by Schering I think..
The foolowing comes from the Pegasys product info sheet.
"Steady-state serum levels are reached within 5-8weeks of once weekly dosing"
The more often you take Pegasys the quicker you reach this steady state.
CS
"Steady-state serum levels are reached within 5-8weeks of once weekly dosing"
The more often you take Pegasys the quicker you reach this steady state.
CS
I was not under the belief that Peg takes weeks of time to reach a maximum. As you point out it has a half life of a few days. Might consider either doubling the peg on 7-day cylce shot night or narrowing the the week to 6 days. And, at least WB riba.
sorry, forgot you are a G3. once vx-950 is approved i would think it could be prescribed to any genotype.
Thought of that but there arent any for G3s yet. Well maybe Alinia, but I wouldnt do their trials, wouldnt like the mono part. Might try and get it off label though.
Dont think VX is doing any for G3 NRs only relapsers.
CS
Dont think VX is doing any for G3 NRs only relapsers.
CS
Should explain the above post a little more.
Because I cant get Infergen (well maybe I could import it) what i can do is to try and reproduce what it dose. From what i've read its main benefit is that its stronger.
So I can do things like Double Dose with the same or both Peg Molecules.
Consider adding NonPeg IFN.
Now ther is a theory that because Pegasys takes 6 weeks or so to reach maximum serum concentration that you can reach is in a week or so by taking it 3 times a week.
To me this would be like haveing the day 3-4 peak lasting all week. For some reason this doesnt appeal.
Taking 2000mg RBV or more a day doesnt appeal for similar reasons, and the benefit to a G3 is somewhat suspect. Apart from that I would need EPO and if I am going to spend 2 Grand a month i'd rather it was spent on Interferon.
Hope that clears things up a bit.
CS
Because I cant get Infergen (well maybe I could import it) what i can do is to try and reproduce what it dose. From what i've read its main benefit is that its stronger.
So I can do things like Double Dose with the same or both Peg Molecules.
Consider adding NonPeg IFN.
Now ther is a theory that because Pegasys takes 6 weeks or so to reach maximum serum concentration that you can reach is in a week or so by taking it 3 times a week.
To me this would be like haveing the day 3-4 peak lasting all week. For some reason this doesnt appeal.
Taking 2000mg RBV or more a day doesnt appeal for similar reasons, and the benefit to a G3 is somewhat suspect. Apart from that I would need EPO and if I am going to spend 2 Grand a month i'd rather it was spent on Interferon.
Hope that clears things up a bit.
CS
do you have time to wait for the new drugs to be approved? or try and get into a trial ? best of luck
As a nonresponder wouldn't you be entertaining daily infergen and a stout dose of riba?
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Cant get Infergen in Aust otherwise it would be on my list.
Being a G3 not that sure of the benefits of High Dose Riba. I will weight base it though.
CS
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Cant get Infergen in Aust otherwise it would be on my list.
Being a G3 not that sure of the benefits of High Dose Riba. I will weight base it though.
CS
"About the only things I have dismissed are Jim High doses of Riba and taking Pegasys every three days" I've never heard of taking a peg shot every 3 days? Curious why you would dismiss high dose riba though...As a nonresponder wouldn't you be entertaining daily infergen and a stout dose of riba?
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