Aa
HR - Question about retreatment
HR, if you have finished digesting your Thanksgiving turkey, I have something to ask you. I am a male, 56, 300lbs, 6'4 Geno 1a, Biopsy, is 2-3 - completed treatment on June 1, 06 after 48 weeks of Peg 180 and Riba 1200. Cleared at 4 weeks, and stayed clear througout tx including clear on Heptimax on Sept 1. PCR on 11/17/06 indicated a HCV RNA of 66,200. All other blood levels within normal limits. During tx had some reduction of Hgb but not treated for anemia. No rescue drugs at all. Most blood tests were OK during tx. Doc says to lose weight, down to 200 or so and retreat for 72 weeks using same protocol.
My first question, is it possible that this result is in error? Am I wrong to want this confirmed by another test? My doc thinks so. Is it possible that this is a spike that the immune system could handle? In other words, is it possible that these small spikes occur but are handled by the immune system or is this amount (66000) an indication that the battle is lost? Have you ever seen a viral load at the end of tx that goes back to undet without tx?
As to retx, losing weight is going to take a while for sure. My thought is that I would like to go back after this thing while its down. I dont like the idea of letting virus do more damage and making me harder to treat. Seems like it would offset the weight loss. Upping the Riba is not popular because of toxicity. What about using same amount for longer period of time but start it now? Is that a resonable way to approach this? Any thoughts, ideas would be most welcome.
My first question, is it possible that this result is in error? Am I wrong to want this confirmed by another test? My doc thinks so. Is it possible that this is a spike that the immune system could handle? In other words, is it possible that these small spikes occur but are handled by the immune system or is this amount (66000) an indication that the battle is lost? Have you ever seen a viral load at the end of tx that goes back to undet without tx?
As to retx, losing weight is going to take a while for sure. My thought is that I would like to go back after this thing while its down. I dont like the idea of letting virus do more damage and making me harder to treat. Seems like it would offset the weight loss. Upping the Riba is not popular because of toxicity. What about using same amount for longer period of time but start it now? Is that a resonable way to approach this? Any thoughts, ideas would be most welcome.
8 yrs ago the PCR tests were not as sensitive as today's. Snook man has reported a few negative PCRs throughout the yrs, when in reality he had a very low VL that was not detectable by the tests of those days. It could be that with some folks, the vl remains extremely low, and thus they are not truly SVR. One theory. A more sensitive qualitative test might have shed light as to the presence of continuing infection.
As for Mike, it was the reduction of immunosuppresive medications, not its introduction, that induced elevated enzymes which led to liver tissue testing that produced a positive result. He mentioned that his immune system activation by the antirejection drugs reduction is what elevated his results. SO it does not seem to follow the same pattern as the late 'relapsers'.
As for Mike, it was the reduction of immunosuppresive medications, not its introduction, that induced elevated enzymes which led to liver tissue testing that produced a positive result. He mentioned that his immune system activation by the antirejection drugs reduction is what elevated his results. SO it does not seem to follow the same pattern as the late 'relapsers'.
Child,
I'm doing fine, thanks for asking. Just trying to pick up my life where I left off close to two years ago. While never incarcerated, I imagine it's like coming out of prison or a Rip Van Winkle state. For me everything stopped when I started treating -- work, relationships, sports, activities, etc -- and just recently getting back. I view this as very positive, almost like a re-birth.
Return,
Thanks for your well wishes and no worries here about "rub off". What will be will be. Just think you have a great opportunity/motivation to lose all that weight which can't be good for your general health. Additional bonuses would be a better chance of SVR plus by then newer drugs like Vertex may have proven themselves in trial. Of course this assumes that you're still stage 2-3. If things have progressed then the more agressive approaches might make sense. Take some time to think this all through and I'm sure the right course will present itself.
Be well,
-- Jim
I'm doing fine, thanks for asking. Just trying to pick up my life where I left off close to two years ago. While never incarcerated, I imagine it's like coming out of prison or a Rip Van Winkle state. For me everything stopped when I started treating -- work, relationships, sports, activities, etc -- and just recently getting back. I view this as very positive, almost like a re-birth.
Return,
Thanks for your well wishes and no worries here about "rub off". What will be will be. Just think you have a great opportunity/motivation to lose all that weight which can't be good for your general health. Additional bonuses would be a better chance of SVR plus by then newer drugs like Vertex may have proven themselves in trial. Of course this assumes that you're still stage 2-3. If things have progressed then the more agressive approaches might make sense. Take some time to think this all through and I'm sure the right course will present itself.
Be well,
-- Jim
From C-20 above:
"You said you lost 64 pounds between txs. Was this purposeful or just a tx side?"
Naw, that would have been to easy :-). I can assure you that the weight loss was intentional. Prior to treatment, I was told by two doctors that it was OK to put my diabetes control on the 'back burner', with Tx becoming the priority. I stopped testing my BG during treatment, and allowed my sugar to rise to unacceptable levels. When I began checking again after completion of Tx, I was shocked to find that my fasting BG levels were above 300 mg/dL (ref range 70-120). So, after reviewing the facts: out-of-control blood glucose, possible fatty infiltration of hepatic stellate cells (steatosis), post Tx relapse of HCV, and a host of other reasons I decided to put down the snickers bars and lose some weight. Diet modification including portion control took care of quite a bit, but I needed to get some much-needed exercise going to help out with the remainder.
"Do you attribute your improved LFTs to the weight loss?"
Boy, that's a tough one to answer. As I mentioned above, my doctor hypothesized that steatosis might have been at play as a separate but parallel process to HCV. However, after 56 weeks of Tx I might have experienced improved liver histology. The doctors were hesitant to re-biopsy between treatments because I obviously intended to re-treat ASAP. For what it's worth, I was initially diagnosed with hepatosplenomegaly per ultrasound. Another subsequent U/S between Tx showed a marked reduction in spleen size, suggesting improved liver architecture. As to your question, I'm sure that losing a few pounds didn't hurt the liver any, but there are too many factors at play to consider.
"After 56 weeks of tx, were your post tx sides gone before you started again in Sept?"
RTS, my post Tx sides were almost non-existent. Although during the initial treatment I experienced a 4-month bout with GI issues, including moderate to severe diarrhea; and the typical depression associated with IFN, they pretty much disappeared within 5-7 days after my final ribavirin, and I was 100% within three weeks or so.
"Is your experience the second time around similar to the first in terms of sides?"
Simply put, this 2nd round has been a breeze so far. At 12 weeks into treatment, I'm happy to report that the sides are minimal at most. Honestly, if this is bad as they get, I could see doing this indefinitely if necessary. However, I've switched from Pegasys to Peg-Intron for this Tx, so that might have made a difference too. I'm actually off label with the Peg-Intron as well. Although my assigned dosage is 150 mcg/week, I'm on record with my doctor for "squeezing" the Peg-Intron vial; in other words, by injecting the full syringe instead of the directed .50 ml I'm able to draw up about .68 ml for a total of 202 mcg/week. This requires the use of vials; I don't think this is an option available with SP's Ready-Pen.
"Is the use of such high amounts of Riba something insurance companies definitely wont pay for?"
From what I gather, the insurance co's (and their actuaries) are beginning to soften up their position on off label riba dosing. More and more doctors are prescribing 1400 and sometimes 1600 mg riba in an effort to achieve therapeutic plasma concentration for us big boys. Although I believe I'm the highest dosed patient my doctor has, the insurance approved with no questions asked. That said, the same insurance co denied my request for 1800 mg last year, so go figure. If you and your doctor choose to go this route, you might plant the seed in your doc's head in advance that he might need to write a letter or two on your behalf. My doctors strategy is to play fair with the first request, then if a letter of denial shows up, he has staff that absolutely *bury* the insurance co with studies, some which are relevant and some just to add bulk; he says that quite often does the trick ;-).
Hope that helps a little, and again, feel free to run any further questions by me if they arise. I'll try to watch for your posts. Again, take real good care--
Bill
"You said you lost 64 pounds between txs. Was this purposeful or just a tx side?"
Naw, that would have been to easy :-). I can assure you that the weight loss was intentional. Prior to treatment, I was told by two doctors that it was OK to put my diabetes control on the 'back burner', with Tx becoming the priority. I stopped testing my BG during treatment, and allowed my sugar to rise to unacceptable levels. When I began checking again after completion of Tx, I was shocked to find that my fasting BG levels were above 300 mg/dL (ref range 70-120). So, after reviewing the facts: out-of-control blood glucose, possible fatty infiltration of hepatic stellate cells (steatosis), post Tx relapse of HCV, and a host of other reasons I decided to put down the snickers bars and lose some weight. Diet modification including portion control took care of quite a bit, but I needed to get some much-needed exercise going to help out with the remainder.
"Do you attribute your improved LFTs to the weight loss?"
Boy, that's a tough one to answer. As I mentioned above, my doctor hypothesized that steatosis might have been at play as a separate but parallel process to HCV. However, after 56 weeks of Tx I might have experienced improved liver histology. The doctors were hesitant to re-biopsy between treatments because I obviously intended to re-treat ASAP. For what it's worth, I was initially diagnosed with hepatosplenomegaly per ultrasound. Another subsequent U/S between Tx showed a marked reduction in spleen size, suggesting improved liver architecture. As to your question, I'm sure that losing a few pounds didn't hurt the liver any, but there are too many factors at play to consider.
"After 56 weeks of tx, were your post tx sides gone before you started again in Sept?"
RTS, my post Tx sides were almost non-existent. Although during the initial treatment I experienced a 4-month bout with GI issues, including moderate to severe diarrhea; and the typical depression associated with IFN, they pretty much disappeared within 5-7 days after my final ribavirin, and I was 100% within three weeks or so.
"Is your experience the second time around similar to the first in terms of sides?"
Simply put, this 2nd round has been a breeze so far. At 12 weeks into treatment, I'm happy to report that the sides are minimal at most. Honestly, if this is bad as they get, I could see doing this indefinitely if necessary. However, I've switched from Pegasys to Peg-Intron for this Tx, so that might have made a difference too. I'm actually off label with the Peg-Intron as well. Although my assigned dosage is 150 mcg/week, I'm on record with my doctor for "squeezing" the Peg-Intron vial; in other words, by injecting the full syringe instead of the directed .50 ml I'm able to draw up about .68 ml for a total of 202 mcg/week. This requires the use of vials; I don't think this is an option available with SP's Ready-Pen.
"Is the use of such high amounts of Riba something insurance companies definitely wont pay for?"
From what I gather, the insurance co's (and their actuaries) are beginning to soften up their position on off label riba dosing. More and more doctors are prescribing 1400 and sometimes 1600 mg riba in an effort to achieve therapeutic plasma concentration for us big boys. Although I believe I'm the highest dosed patient my doctor has, the insurance approved with no questions asked. That said, the same insurance co denied my request for 1800 mg last year, so go figure. If you and your doctor choose to go this route, you might plant the seed in your doc's head in advance that he might need to write a letter or two on your behalf. My doctors strategy is to play fair with the first request, then if a letter of denial shows up, he has staff that absolutely *bury* the insurance co with studies, some which are relevant and some just to add bulk; he says that quite often does the trick ;-).
Hope that helps a little, and again, feel free to run any further questions by me if they arise. I'll try to watch for your posts. Again, take real good care--
Bill
Hey buddy, didnt see your post there, thanks for your thoughts. Good to see you, hope you are well. Dont worry my relapse wont rub off, I am having it stuffed to place on my mantle. Your advice about waiting and getting health in order is good and certainly something I will consider. Hope to see you around more, I always like seeing your comments here.
I would very much like to hear more from you about possible therapeutic modalities for the 'post-tx hyperimmune syndrome' as you described it. You are right, some of us used the sledgehammer approach to therapy, and for me it was because I literally had to. My VL was slow to reach undetected in both tx'es, and in the first led to ever increasing amounts of interferon (and varieties), almost to the point of absurdity....but I really was the one pushing all the way for the most radical approach possible.
On the 2'nd round I used the most inf. that I could squeeze from every vial of Peg-Intron (using the largest vials available as well), and went the full 18 months, limping to the finish with Procrit and full Riba, etc. So I was not shocked to see the plethora of post-tx syndromes develop, although part of me was hoping for a blissful, 'feel-great' state of SVR, where everything would work properly again, and I would be rejuvenated. Of course it was anything but! (Oddly, for about one month after ending tx, I felt better than I had in 30 years, almost symptom free!!!!)
So, indeed I would like to know what others in my 'boat' might be doing to mitigate the effects of all this immune system over-stimulation. I feel like the poster child for 'wastebasket' autoimmune disease, without any specific label to hang on it, and no doctors with any really practical answers, much less treatments! The rheumatologist acknowledges that the inf. tx often provokes this 'autoimmune' type syndrome, and then says 'keep an eye on things' take care now....
If you know of any approaches that seem to be of help, please do let me know. I fear doing anything that might 'retard' the immune system, knowing that the few late relapses out there seem to have come from that very same type of medical treatment. I also am concerned about ongoing immune system over response eventually leading to issues like lymphoma, or MS type illness....as well as the expected issues like Lupus, or similar AI type diseases. I continue to experience a mild parotid swelling, that is chronic, and always there. (like Sjogren's)
Thank you for your interest and all the time you have spent responding to our forum members. I like to think we are all working toward advancing the knowledge base relating to HCV and its treatment. With community efforts, often 1+1+1+1 can end up equaling 16 rather than four. Pooling all our inputs, and experiences, while not pure empirical science, still can unearth new insights. Thanks for being a part of the discussions.
Any feedback on the post-tx issues will be welcomed!
DoubleDose
On the 2'nd round I used the most inf. that I could squeeze from every vial of Peg-Intron (using the largest vials available as well), and went the full 18 months, limping to the finish with Procrit and full Riba, etc. So I was not shocked to see the plethora of post-tx syndromes develop, although part of me was hoping for a blissful, 'feel-great' state of SVR, where everything would work properly again, and I would be rejuvenated. Of course it was anything but! (Oddly, for about one month after ending tx, I felt better than I had in 30 years, almost symptom free!!!!)
So, indeed I would like to know what others in my 'boat' might be doing to mitigate the effects of all this immune system over-stimulation. I feel like the poster child for 'wastebasket' autoimmune disease, without any specific label to hang on it, and no doctors with any really practical answers, much less treatments! The rheumatologist acknowledges that the inf. tx often provokes this 'autoimmune' type syndrome, and then says 'keep an eye on things' take care now....
If you know of any approaches that seem to be of help, please do let me know. I fear doing anything that might 'retard' the immune system, knowing that the few late relapses out there seem to have come from that very same type of medical treatment. I also am concerned about ongoing immune system over response eventually leading to issues like lymphoma, or MS type illness....as well as the expected issues like Lupus, or similar AI type diseases. I continue to experience a mild parotid swelling, that is chronic, and always there. (like Sjogren's)
Thank you for your interest and all the time you have spent responding to our forum members. I like to think we are all working toward advancing the knowledge base relating to HCV and its treatment. With community efforts, often 1+1+1+1 can end up equaling 16 rather than four. Pooling all our inputs, and experiences, while not pure empirical science, still can unearth new insights. Thanks for being a part of the discussions.
Any feedback on the post-tx issues will be welcomed!
DoubleDose
You said you lost 64 pounds between txs. Was this purposeful or just a tx side? Do you attribute your improved LFTs to the weight loss? After 56 weeks of tx, were your post tx sides gone before you started again in Sept? Is your experience the second time around similar to the first in terms of sides? Is the use of such high amounts of Riba something insurance companies definitely wont pay for?
Cuteus - sorry about the "f" word, I rarely use it but it slipped out - lets just say I shop at the "Big and Tall" section of Sears. Thanks for your research but it occurred to me that there will be no studies or guidance on my situation because, as you said, it is so unique. Noone is going to retreat if they are clear at 3 months. And usually if you are clear at 3 you are going to wait till 6 to retest. So as a practical matter, noone who is in my situation would have ever gone back in before 6 months. The guidance I have to find is for someone like Greg who relapsed after a year or someone who failed the 6 mos test. How long did they wait to retreat and how did they retreat. Greg went back in with a vengence and lots of Infergen. I dont quite have the stomach for Infergen and wonder whether it is necessary for me given my great reaction to Peg. I have always cleared the virus with interferon, even when I first treated with it in 1996 - I became undet back then almost immediately. I have always had problems maintaining the SVR. At any rate, I will probably have to be a trendsetter here blocking once again for other former football players seeking the goal line of SVR. Once a lineman always a lineman.
Cuteus - sorry about the "f" word, I rarely use it but it slipped out - lets just say I shop at the "Big and Tall" section of Sears. Thanks for your research but it occurred to me that there will be no studies or guidance on my situation because, as you said, it is so unique. Noone is going to retreat if they are clear at 3 months. And usually if you are clear at 3 you are going to wait till 6 to retest. So as a practical matter, noone who is in my situation would have ever gone back in before 6 months. The guidance I have to find is for someone like Greg who relapsed after a year or someone who failed the 6 mos test. How long did they wait to retreat and how did they retreat. Greg went back in with a vengence and lots of Infergen. I dont quite have the stomach for Infergen and wonder whether it is necessary for me given my great reaction to Peg. I have always cleared the virus with interferon, even when I first treated with it in 1996 - I became undet back then almost immediately. I have always had problems maintaining the SVR. At any rate, I will probably have to be a trendsetter here blocking once again for other former football players seeking the goal line of SVR. Once a lineman always a lineman.
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