Aa
Alinia, SOC, and adding PI when approved
I had my meeting with Dr. D. at Mt. Sinai, and ran the treatment protocol that was discussed in a previous post:
http://www.medhelp.org/posts/Hepatitis-C/Think-you-could-add-pis-later-in-treatment/show/1241485
He thought that adding the PIs later in treatment would not make much of a difference, as they were designed to be used early. He also was not too excited about adding alinia, stating that he believed that the previous studies (as cited by Willing in the previous post) did not porvide large enough samples, did not include relapsers/nonresponders, nor mentioned the severity of fibrosis. Dr. D. and hIs NP seem to be encuraging me to wait for the PIs, and to treat the co-morbid problems that I have ( cryo with vasculitis, encephalopathy).
I AM SOOO CONFUSED! ... I have consulted with two excellent hepatologists, both teaching hospital affiliated, and I now have 2 different opinions on how to proceed at this point. I thought that I had a plan, and was gearig up for the battle, and now I am not so sure.
On a positive note, he did have a fibroscan machine there, donated to him by patients, and is runing a clinical trial that includes bloodwork and a scan every three months. Not so positive is my score of 29.1, but I already knew that I am cirrhotic.
http://www.medhelp.org/posts/Hepatitis-C/Think-you-could-add-pis-later-in-treatment/show/1241485
He thought that adding the PIs later in treatment would not make much of a difference, as they were designed to be used early. He also was not too excited about adding alinia, stating that he believed that the previous studies (as cited by Willing in the previous post) did not porvide large enough samples, did not include relapsers/nonresponders, nor mentioned the severity of fibrosis. Dr. D. and hIs NP seem to be encuraging me to wait for the PIs, and to treat the co-morbid problems that I have ( cryo with vasculitis, encephalopathy).
I AM SOOO CONFUSED! ... I have consulted with two excellent hepatologists, both teaching hospital affiliated, and I now have 2 different opinions on how to proceed at this point. I thought that I had a plan, and was gearig up for the battle, and now I am not so sure.
On a positive note, he did have a fibroscan machine there, donated to him by patients, and is runing a clinical trial that includes bloodwork and a scan every three months. Not so positive is my score of 29.1, but I already knew that I am cirrhotic.
"I think (thought) that alinia was best used when treating geno4 but didn't do too much other than that?"
I was also under the impression that Alinia improved SVR rates for genotype 4 patients only, but doesn't seem to be the case.
http://www.kenes.com/easl2010/Posters/Abstract130.htm
I'm wondering if this study was done at the Columbia University Medical Center by Basa P? If K. Rayapudi was from the Vassar Brothers Hospital, in Poughkeepsie New York, or if N.J. Shah, T Pacana , N. Krishnaswamy , or if R. Brown Jr. at the North Shore University Hospital at Forest HIlls, NY , USA had anything to do with it? I've not yet sent an email to ***@**** yet, but intend to do so at some point.
The poster presentation data is dated April 15, 2010. The TITLE, reads presenting data in terms of , effects of high dose ribavirin , alinia , and pegylated interferon alfa-2a in attaining SVR in tx of chronic hep c. Alinia is an interferon inducer that may increase SVR in combination with PegINT and Riba. They are assessing Alinia in this open-label, pilot study of naive hepatitis c GT1 patients. All received NTZ 500 mg bid - during the first 2 weeks. Riba 800 mg AM , 600 mg PM , added to NTZ for 2 weeks , PegIFN alfa-2a 180 mcg weekly added to Riba and NTZ at same dose. The Predictive values during VRVR, RVR, EVR, ETR, and SVR were assessed. Now, The patients. 23 total. 39% Caucasian , 17% Hispanic , 21% African-American , and 21% Asian. The average Body Mass Index was 27.9. The average HCV RNA - 600,000 IU/ml, fibrosis or scarring F2 57%. It did increase the SVR rate. The results were that 56.5% achieved SVR compared to the standard global 46% for GT1 patients.
I was also under the impression that Alinia improved SVR rates for genotype 4 patients only, but doesn't seem to be the case.
http://www.kenes.com/easl2010/Posters/Abstract130.htm
I'm wondering if this study was done at the Columbia University Medical Center by Basa P? If K. Rayapudi was from the Vassar Brothers Hospital, in Poughkeepsie New York, or if N.J. Shah, T Pacana , N. Krishnaswamy , or if R. Brown Jr. at the North Shore University Hospital at Forest HIlls, NY , USA had anything to do with it? I've not yet sent an email to ***@**** yet, but intend to do so at some point.
The poster presentation data is dated April 15, 2010. The TITLE, reads presenting data in terms of , effects of high dose ribavirin , alinia , and pegylated interferon alfa-2a in attaining SVR in tx of chronic hep c. Alinia is an interferon inducer that may increase SVR in combination with PegINT and Riba. They are assessing Alinia in this open-label, pilot study of naive hepatitis c GT1 patients. All received NTZ 500 mg bid - during the first 2 weeks. Riba 800 mg AM , 600 mg PM , added to NTZ for 2 weeks , PegIFN alfa-2a 180 mcg weekly added to Riba and NTZ at same dose. The Predictive values during VRVR, RVR, EVR, ETR, and SVR were assessed. Now, The patients. 23 total. 39% Caucasian , 17% Hispanic , 21% African-American , and 21% Asian. The average Body Mass Index was 27.9. The average HCV RNA - 600,000 IU/ml, fibrosis or scarring F2 57%. It did increase the SVR rate. The results were that 56.5% achieved SVR compared to the standard global 46% for GT1 patients.
Hi Corey... Thanks for your opinion. I hope that you are right, as I am leaning towards going ahead and treating now rather than waiting. I do have a great hepatologist who has taken good care of me for years, and he is on board with this plan and recommends extending tx for 48 weeks after reaching UND. It's just that he is conservative in terms of participating in clinical trials, so I consulted with Dr. D. to explore my options before commiting to anything. Decisions, Decisions... Having choices is sometimes a blessing and a curse.
Thanks again for your input.
Thanks again for your input.
hi viaduk In my opinion adding a PI later in tx would make all the difference in the world.....The issue is,,, not being able to treat with them at the risk of it altering the virus and not being able to run SOC w/ a PI again......
What needs to happen in order for a relapse to occur? The virus needs to relplicate, am I right? By adding in a Protease Inhibitor regardless of when added in will ensure relplication doesn't happen, thus reducing the chance of relapse, correct? I think Protease Inhibitors Telaprevir works by blocking an enzyme that the hepatitis C virus needs in order to replicate itself. I'm also genotype 1a, so I would add take supplmental Vitamin D, which may increase your odds, and get your HOMA-IR score worked out.
Possibly find a Doc that will work with you to make sure you're cured. One whose knowledgeable and on board with extending tx based on when you clear. Maybe it would be a good idea to treat now rather than later. I don't know how much liver damage you have, but the decision to treat is up to you. Cory.
What needs to happen in order for a relapse to occur? The virus needs to relplicate, am I right? By adding in a Protease Inhibitor regardless of when added in will ensure relplication doesn't happen, thus reducing the chance of relapse, correct? I think Protease Inhibitors Telaprevir works by blocking an enzyme that the hepatitis C virus needs in order to replicate itself. I'm also genotype 1a, so I would add take supplmental Vitamin D, which may increase your odds, and get your HOMA-IR score worked out.
Possibly find a Doc that will work with you to make sure you're cured. One whose knowledgeable and on board with extending tx based on when you clear. Maybe it would be a good idea to treat now rather than later. I don't know how much liver damage you have, but the decision to treat is up to you. Cory.
Orleans: That is very encouraging! Is that 2 weeks after adding inf/riba? How long did you predose the alinia.
Willing: Your points are very well made, and your analogy is a good one. I've been rearranging the deck chairs on a sinking ship for some time now (Chinese meds with Dr. Zhang, UVBI and ozone therapy, sho saiko to, HR's protocol, etc.). Thanks for your input. While I feel bad that you are also having a tough time, I'm glad for the company on this trip. Good luck to you as well.
Willing: Your points are very well made, and your analogy is a good one. I've been rearranging the deck chairs on a sinking ship for some time now (Chinese meds with Dr. Zhang, UVBI and ozone therapy, sho saiko to, HR's protocol, etc.). Thanks for your input. While I feel bad that you are also having a tough time, I'm glad for the company on this trip. Good luck to you as well.
well, you already know what I'm gonna say, but I'll say it anyway. It's not Dr. D's liver that's going south, it's yours. I had a similar conversation with my hepa, Dr. D caliber but west coast, a couple of months ago, same recommendation, sit tight. Look at it from their perspective and it's easy to see why - would you prescribe an unproven protocol?
On the other hand, maybe there's no more time to wait (I feel a bit as if I've been napping on one of the decks of the Atlantic, calmly waiting for help to come along, and now realize the band packed up a while ago and there's water sloshing around my ankles). I wouldn't expect miracles from the ntz, nor from the high-dose rbv , but they'll both nudge things in the right direction.
As for PIs being "designed to be used early" that sounds like a crock. PIs were designed to bind to a specific viral protein, interfere with its function and thus disrupt the viral reproductive cycle. They have only been *tested* at the start of the treatment though the success of the Boce lead-in clearly shows that they work as effectively among a reduced fraction of infected cells. The question to ask him is whether he knows of any reason why PIs would not be as effective in inhibiting replication among the significantly reduced population of infected cells remaining at the tail end of tx.
The other big issue is decompensation. But if tx can trigger problems there how can waiting longer possibly help? Good luck with your decision, I know it's a tough one.
On the other hand, maybe there's no more time to wait (I feel a bit as if I've been napping on one of the decks of the Atlantic, calmly waiting for help to come along, and now realize the band packed up a while ago and there's water sloshing around my ankles). I wouldn't expect miracles from the ntz, nor from the high-dose rbv , but they'll both nudge things in the right direction.
As for PIs being "designed to be used early" that sounds like a crock. PIs were designed to bind to a specific viral protein, interfere with its function and thus disrupt the viral reproductive cycle. They have only been *tested* at the start of the treatment though the success of the Boce lead-in clearly shows that they work as effectively among a reduced fraction of infected cells. The question to ask him is whether he knows of any reason why PIs would not be as effective in inhibiting replication among the significantly reduced population of infected cells remaining at the tail end of tx.
The other big issue is decompensation. But if tx can trigger problems there how can waiting longer possibly help? Good luck with your decision, I know it's a tough one.
I also used Alinia and was UND at wk. 2. The sx were nothing compared to Riba. It is approved for use in infants. No reason not to add it as far as I'm concerned. jm
Bali05: That's great that your liver improved! I do plan to include alinia and predose riba as you suggested. I think that I would add the alinia even if I was doing the PIs.
My dilemma is whether to start at the end of summer -- after vacation -- or wait for better odds with the risk of decompensating. Then, on the other hand, I guess that there is the possibility that tx will cause me to decompensate. I'd appreciate any opinions from the folks here.
I paid for the first one. Since the result was a lot better than what I was given in Germany
7 months prior , I called Mt. Sinai up and asked for an explanation.
Their readings had a 100% success rate but they did rescan me a week later
with a different Dr. (all working under Dr. D). Got same result.
The thing is here it is not FDA approved so you won`t get an official medical report
(in writing)
like I got in Germany. So I faxed the german report to Mt. Sinai it had had the scan
image and everything and asked Mt. Sinai to please find those results on my liver.
They could not ! twice with different people.
My liver histology has improved!
If you have to treat now I would still through Alinia in the mix.
and I would predose Riba for 2 weeks as well.
For me it had practically ZERO side effects , maybe you tolerate it as well
so why not.
Kittyface on this forum is geno 1 and SVRd she swears by it.
b
7 months prior , I called Mt. Sinai up and asked for an explanation.
Their readings had a 100% success rate but they did rescan me a week later
with a different Dr. (all working under Dr. D). Got same result.
The thing is here it is not FDA approved so you won`t get an official medical report
(in writing)
like I got in Germany. So I faxed the german report to Mt. Sinai it had had the scan
image and everything and asked Mt. Sinai to please find those results on my liver.
They could not ! twice with different people.
My liver histology has improved!
If you have to treat now I would still through Alinia in the mix.
and I would predose Riba for 2 weeks as well.
For me it had practically ZERO side effects , maybe you tolerate it as well
so why not.
Kittyface on this forum is geno 1 and SVRd she swears by it.
b
NYgirl: Definitely cirrhotic, at least ten years, as per my last biopsy in 2000. And, I've got the enlarged spleen, low platelets and banded varices to prove it :)
I've been waiting for something better, as the last treatment was hell on wheels, but I don't know if I can wait and not decompensate while waiting in the warehouse. The folks at Mt. Sinai think that approval will happen during the first few months of next year, and the drugs will be available by June. So close, and yet so far... You are right - it's a mess.
Bali: Did they ask you to be in a clinical trial for the FS, or did you have to pay for it? I'm geno 1a, but figure that the alinia will improve my odds.
I've been waiting for something better, as the last treatment was hell on wheels, but I don't know if I can wait and not decompensate while waiting in the warehouse. The folks at Mt. Sinai think that approval will happen during the first few months of next year, and the drugs will be available by June. So close, and yet so far... You are right - it's a mess.
Bali: Did they ask you to be in a clinical trial for the FS, or did you have to pay for it? I'm geno 1a, but figure that the alinia will improve my odds.
i was there in march did 2 fibroscans in one week of ea other with different operator
because i did not want to believe the result but it was consistent.
they told me they give all their geno 4s alinia.
because i did not want to believe the result but it was consistent.
they told me they give all their geno 4s alinia.
I think (thought) that alinia was best used when treating geno4 but didn't do too much other than that? Also of course PIs are to be used early in treatment that is the goal to be UND as early as possible therefore giving you better odds at success. I don't think anyone is ever going to add them after week 12 or something - it just doesnt make any sense.
Since you are cirrhotic already how long does he plan to wait would be my question. We all do hope the PIs come out in 2011 but we've also been hearing that they'd be coming out next year next year next year since like 2008 or so. There is really no guarantee that they will come out or when (although we assume they will and shortly too).
You get worse odds of success being cirrhotic but also have less watch and wait time. What a mess. What did your last biopsy say - it said cirrhotic for sure?
Since you are cirrhotic already how long does he plan to wait would be my question. We all do hope the PIs come out in 2011 but we've also been hearing that they'd be coming out next year next year next year since like 2008 or so. There is really no guarantee that they will come out or when (although we assume they will and shortly too).
You get worse odds of success being cirrhotic but also have less watch and wait time. What a mess. What did your last biopsy say - it said cirrhotic for sure?
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
