I actually made this decision because muy liver enzymes are still elevated and we're not sure why. ALT 162. That's way down from what it was when I started treatment, but still elevated.
Agan, thanks to all. Garry
"that comparing being a non-responder on regular interferon can not be compared to being a non-responder on pegylated interferon. If your treatment protocol is based on response to treatment, is comparing treatment with one that same as comparing treatment with the other. "
I am coming into this discussion pretty late and am glad to see you have already made your decision to go the 48. If I were in your shoes, I would do the same. In fact, I did make the "48" decision for similar reasons. I do not want to do this again. In my case biopsy revealed stage 3 & 4 so the doc said 48. However since I was UND after 2 weeks on Victrelis, he said perhaps I could do 28. I remember my first treatment and that I was UND by QuantaSure (sensitive to 2vl/mL) for 36 weeks and still relapsed. I decided on the insurance plan - go for the 48. It isn't fun, but it does end and as I am now SVR I am glad I did it.
frijole
ps - pooh - you must have an excellent filing cabinet on your computer. You amaze he.
That's good to hear. My husband's hepatologist said he would go 48 weeks because he is f-4 (she treats f-3's as f-4's) and a prior partial responder. I would do 48 if I were you.
Advocate1955
Just a follow up. I'm sticking it out for 48 weeks. Thanks to all for the input. Garry
Man, that presentation was in depth. They really didn't discuss anything but 48 week treatment plans, did they? But, I do understand the need for sufficient treatment time.
I'm going to do some more research on my clinical condition before I even consider cutting my treatment time to 24 weeks. I really want to kick this demon. A year on this stuff ages you at least five. You get some of it back after treatment, but not all. I'm 67 and don't know how many years I have to use, so use them sparingly:)
Thanks for the study. Garry
This link will take you to an excellent slide presentation by Jean-Michel Pawlotsky, MD, PhD. It was given at the AASLD 2010. I believe it will address some of your concerns. You will note that he discusses prolonging treatment and/or increasing dosages as two of the strategies that can be used to increase SVR rates among people who may otherwise have lower SVR rates.
http://74.43.177.57/courses/2010/pg/pawlotsky/player.html
I do understand your point about the different types of Interferon. However, the studies did not break the results down based on the type of Interferon people previously used. They are all lumped together. So we don't know if there was any difference in SVR rate depending on which type if Interferon was used previously.
Regardless, I do think the slide presentation above will address many of your concerns.
As a result of your two prior treament adventures (old stuff and under-dosed), I don't know that you would necessarily be condisered "hard to treat". So, your doc and 24 weeks may be valid. On the other hand, any "insurance" so that you don't need to do treatment #4 may be worth the price. Maybe 36?
You are correct about the riba dosage. That's what I'm on now, but back in 2000-2001, they were still trying to figure out. I was actually in a phase three trial with peginterferon/riba and I was on the high dose group for the trial. You're right about the weight too. About 90kg. thanks for the comment.
Garry
If you were on 800 mg Riba while you were on the Peg treatment you were under-dosed on Riba. That could have been a contributing factor to the relapse. Your picture makes you appear that your weight should have called for 1200 mg.
Thanks copyman. Your post at least verifies that these are things worth considering. Thanks for you post. Garry
Why not get a 2nd opinion? I would consult with a Hepatologist that has treated many HCV patients (can be found at university hospitals, etc). Personally I think 24 weeks is enough. "If it is going to work"48 weeks might not make a difference. Doctor may be looking at risk vs reward. Subjecting your body to a third round of 48 week TX might not be worth the risk? Doctor may be thinking if tx with PI is going to work 24 or 48 weeks wont make a difference with your history.
Best of luck
What I'm trying to say is, since regular interferon was so much less effective that peg-interferon, that comparing being a non-responder on regular interferon can not be compared to being a non-responder on pegylated interferon. If your treatment protocol is based on response to treatment, is comparing treatment with one that same as comparing treatment with the other.
That's as clear as I can figure to say it. If I read a study that compared results of one to the other, I would just say, "apples and oranges", no comparison.
Okay, maybe I'm grasping as straws. I think it will be a mute point as I research whether or not I am cirrhotic, because I'm fairly certain I will be. Thanks again.
"Does comparing response to treatment with interferon/riba with pegylated interferon/riba really compare like quantities. Aren't these studies comparing results with prior treatment to others on pegylated interferon? "
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Not sure I understand your question correctly. But, if I do, the studies I am looking at compared people taking the same medications. The only difference was the length of treatment.
I did find one of them. Here is a link that will take you to a slide presentation. Slide 36 compares SVR rates in GT 1 HCV Tx Naive people with cirrhosis who are taking Incivek. Those with eRVR (which you did have) had a 61% SVR rate with 24 weeks of total Tx whereas those who treated a total of 48 weeks had a 92 % SVR rate. The difference is significant. Now, I know you are not treatment naive so this study does not fit your circumstances exactly, but it demonstrates the difference in SVR rate in those with cirrhosis who treated for 24 weeks versus 48 weeks.
http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20Therapy%20Today%20and%20Tomorrow/HCV_Therapy_Slides.aspx
You will have to register, I think. No charge, though.
I will keep looking for the studies that I am remembering and will get the links to you as I find them.
you didn't state what stage you are at. due to your platelets i would assume 3 or 4. i could be wrong. you didn't have a biopsy so you might not know.
i did 48 weeks of INF/RBA, i cleared at 12 weeks, only to relapse 1 month after treatment.
i am currently in week 18 of 48. i met with my NP today and once again i discussed the possibility of cutting my treatment to 24 weeks. she is going to discuss it with my Hepa Dr. i am having serious sx and i don't think i will make 48 weeks.
the treatment protocol for cirrhotics is to treat 48 weeks. can you provide additional info on your stage....thanks
Okay, only one more question to ponder. Does comparing response to treatment with interferon/riba with pegylated interferon/riba really compare like quantities. Aren't these studies comparing results with prior treatment to others on pegylated interferon? Lots of people didn't respond to the interferon and that's why they moved on. I did respond to it, but relapsed.
Just a thought. I want this all clear in my head before I make a decision so big.
Thanks so much for all you do on this network. I really do appreciate it,
Garry
"Oh well, 11 more weeks to talk about it, but I'm thinking, that as good as it sounds I need to continue. Another part of me says, 48 weeks didn't do it before, either incivek did the trick or it didn't. "
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I was trying to find the studies that show that in your situation (Prev. Partial Resp. and advanced fibrosis) that doing 48 weeks (12 weeks Inc, Inf, and Riba, then another 36 weeks of Inf and Riba) will result in a higher SVR rate than if you do 24 weeks of Tx. I cannot find it, but I will, LOL. I know I have it bookmarked. I just have to find it. Anyway, that is why they came up with the guidelines, increased SVR with 48 weeks of Tx.
As far as your statement, "48 weeks didn't do it before, either Incivek did the trick or it did not," is true, but it is not the whole story. Incivek can do its job of preventing replication of the wild type virus, but then one still has to treat long enough so that the Inf and Riba can make it possible for the immune system to "mop up" and eliminate the stragglers, those that were resistant to Incivek. That is why Partial Responders and people with advanced liver fibrosis treat longer.
There are several peopl on the forum who previously failed treatment and they are now attaining SVR doing 48 weeks of Tx with Inf, Riba and a PI (PI taken only 12 weeks).
here's wishing you the best.
Thanks,
My first round of treatment was on regular interferon and I was a partial responder. You are absolutely right. On pegylated interferon I did respond but relapsed.
My liver enzymes were going up before treatment, which was th reason I decided to go on treatment. My platelets were going down. My liver enzymes are still elevated and shouldn't otherwise be. I suspect I do have at least some cirrhosis.
I think you are absolutely right about the 48 weeks of treatment. I talked to my doctor about a liver biopsy before I started and he didn't think it was necessary. I wonder if they could do one now. I don't think I could stand to be off NSAID's for two weeks. My platelets were 108k at last count. They probably would not do it.
Oh well, 11 more weeks to talk about it, but I'm thinking, that as good as it sounds I need to continue. Another part of me says, 48 weeks didn't do it before, either incivek did the trick or it didn't. Decisions, decisions.
Thanks again. Garry
In Oct. 2012 you posted:
"My first round of treatment, I never cleared completely. My viral load went way down but I was never nondetectable. With the pegylated interferon/ribavirin I cleared after the first month and stayed that way until 3 mos after treatment." "My last liver biopsy was 5 years ago and as I recall I was stage 2 inflammation and stage 3 fibrosis."
So, it appears that you were a partial responder during your first treatment and a relapser after your second treatment. Plus, your liver biopsy was already at Stage 3 five and a half years ago.
Chances are your fibrosis level has progressed during that time, especially because you are now 66. Fibrosis picks up speed as we age. Plus, liver biopsies are not 100% accurate. You may have been cirrhotic in some areas of your liver even in 2007.
Did you have another liver biopsy last summer or fall before starting this treatment? If so, what were the results?
I know you were a relapser the last time you treated. However, you were a partial responder the first time you treated. Plus you have advanced liver fibrosis.
Previous partial responders treat for 48 weeks.
Cirrhotics treat for 48 weeks.
If it was me, I would treat 48 weeks.
http://hepatitiscnewdrugresearch.com/pocket-guide-telaprevirboceprevir.html
Just want to point out that the newer guidelines no longer say cirrhotics MAY benefit from 48 weeks of Tx. The newer guidelines say cirrhotics SHOULD treat for 48 weeks.