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.
sorry that your test showed the dragon returned and i hope it was a mistake. i can not believe your doc would tell you to lose 100 lbs, that is absurd. how does he think someone could do that, to do it safely would take a few years. and besides you are 6'4 so even 50 lbs would be good. what about re-treating with higher dose rx, perhaps at least the riba to 1600 or more? ask your doc about that or find one that will entertain that idea. you need an aggressive doc to treat the hep c not weight watchers. just my opinion. best of luck to you.
When you reconside tx, you should talk to the doc about riba dose. At your weight, and whether you consider riba dose at 13 or 15 mg per kg you'll probably be looking at 1800 or 2000 perday (that's at 136 kg). For my tx part 2 - doc upped the riba by 50% (in week 5 now). But, if you do it again - something's gotta change. It makes no sense to do the same tx again. Could be the ifn too. You were taking the same amount as someone half your weight.
Is there anyone out there actually taking 1800 or 2000 mgs of Riba a day? Is that considered "off label"? Is weight based Riba something that docs are doing? FL, for your retreatment you said you upped the Riba, how much are you taking? How long did you treat first time and how long did you wait for retx? Copy, I definitely agree with your statment about weightwatchers, I feel like my doc lost interest as soon as the virus returned. I dont feel she was very active during tx at all. She is a gastro who specializes in liver cases but I dont think she is on a par with some of the local hepatologists. Also, I dont get the distinction really about the specialty of hepatology. Some docs are board certified hepatologists, other are board certified gastros specializing in hepatology, some have studied under certain hepatologists - who am I looking for that will be on cutting edge and will not be afraid to get in there and get rid of this thing? I have had enough of this "excuse me" style of care, I want someone who will commit to treat this disease. So far I have either found guys with great credentials who were assho!es or not so hot on the creds but who were caring and called me back. Is it possible to find someone who knows what they are doing AND gives a sh!t?
As you already know, I concur with what was said above. The Riba seems to be the key variable in question, and since you were already undetected for the great part of your tx, and for at least three months post tx, then the inf. seemed to be doing its job. You could benefit by also switching to Peg-Intron, but that does not really seem necessary in your case. Also, I agree with the others that your Riba needs to be in the 13 mg. /kg to 15 mg. /kg range, and I would think that would mean at least 1,600 mg/day or more. Losing a little weight while preparing for tx, and during tx also will probably be of help, but should not be the 'pre-condition' for your next tx. I also think that the 72 week protocol is almost MANDATORY in this case, since you relapsed, for whatever reasons. We can't just assume the extra Riba will be the only thing that needs to be changed, since length of tx also seems to be an improtant factor as well, in cases of GT-1 relapse. I know you were an RVR, but even so, with a relapse, you will need to err on the 'safer' side, rather than make any assumptions.
I am convinced that the SVR is there for the taking, but the Riba issues, and length of tx issues will need to be dealt with.
Your doc could monitor your Hemo numbers if you use much higher riba doses, and be ready to intervene with Procrit when necessary. This is a case where I think you almost will want to provoke a steep red blood cell drop, just to make sure you are doing enough Ribavirin.
I am also curious to see what HR's take is on your unusual relapse situation. Your next PCR will also answer some of your questions...I hope one is in the works now.
Good luck to you, and keep the 'game face' on until you beat this virus. You WILL succeed, and I'm betting on it!
DoubleDose
I am convinced that the SVR is there for the taking, but the Riba issues, and length of tx issues will need to be dealt with.
Your doc could monitor your Hemo numbers if you use much higher riba doses, and be ready to intervene with Procrit when necessary. This is a case where I think you almost will want to provoke a steep red blood cell drop, just to make sure you are doing enough Ribavirin.
I am also curious to see what HR's take is on your unusual relapse situation. Your next PCR will also answer some of your questions...I hope one is in the works now.
Good luck to you, and keep the 'game face' on until you beat this virus. You WILL succeed, and I'm betting on it!
DoubleDose
Thanks DD, nice to know you are out there - its comforting. It will be nice to hear what HR has to say about it. I think you said before that you treated and then relapsed and treated again. Did you go right back at it? How long did you tx the first time? What did you do differently the second? I recall that you really were aggressive or you wouldnt have your nickname I guess. What exactly did you double dose, the Peg or the Riba or the entire treatment? LOL
I retreated about 18 months after my first relapse. My first tx was a tough one, and it took me almost eight months to get undetected, which was a bad sign in itself. I started with 3x/wk intron, and 1200 Riba,(the old standard) and ended up going quickly to daily intron with the 1200 Riba. Finally after seven months and a lingering low viral load I switched to Infergen, and did 15 mcg./two times daily!!!! for two weeks, and got undetected immediately, then dropped back to "Only" once a day Infergen at 15 mcg. /day, along with 1,200 Riba. My red cell count had been dropping drastically, so I had to cut the Riba to 800 mg/day then 600 mg./day until the 14th month (when I ended tx), which was about a total of 6 months being fully undetected, and using sub-optimal Riba. I was undetected for too short a period of time, AND very underdosed on the Ribavirin. I relapsed in one month after ending tx. No Procrit was being used at the time. I also knew I would relapse, given those factors.
My second tx was using Peg-Intron, in the largest vial then available. It worked out to almost twice the standard dose prescribed for my body weight, hence the DoubleDose moniker. I used 1,200 mg./Riba, and saw very rapid drops in my red cell count. By month three I was on full Procrit, and ended up doing it 2x/week, at about 60,000 IU total/wk.
The plan was to go for 72 weeks, and I did it with flying colors, of course feeling like I had been run over by several trains, trucks, and beaten by a street gang....other than that it was fine. I did have a ton of all the notable sides, but managed to work (run a consulting business), go out, attend sports and school events with my family and kids, and eat lunch out with friends regularly. Only a very few knew, and I pulled it off with everyone else, without ever letting on what was going on. Some meetings were 'surreal', and I felt like I was going into another realm, ...but I got by, and made it to the finish line. I have been undetected for well over three years now, since ending tx, and am glad I did what had to be done.
Its not all without a price though, since in my case, I have plenty of tx. after-effects, which is easy to understand with all the interferon that I subjected myself to during a five year period. You have probably read my posts regarding post-tx problems, but that is another subject. I will deal with those issues actively until I get some resolution, or at least an understanding of how to manage them more successfully. Some may eventually subside, some may not. That's part of the game, and not really totally unexpected. I am just glad that I beat the virus, and it was all worth the effort, suffering, and expense.
I think you will also have success. Best of luck in your next round!!!!
DD
My second tx was using Peg-Intron, in the largest vial then available. It worked out to almost twice the standard dose prescribed for my body weight, hence the DoubleDose moniker. I used 1,200 mg./Riba, and saw very rapid drops in my red cell count. By month three I was on full Procrit, and ended up doing it 2x/week, at about 60,000 IU total/wk.
The plan was to go for 72 weeks, and I did it with flying colors, of course feeling like I had been run over by several trains, trucks, and beaten by a street gang....other than that it was fine. I did have a ton of all the notable sides, but managed to work (run a consulting business), go out, attend sports and school events with my family and kids, and eat lunch out with friends regularly. Only a very few knew, and I pulled it off with everyone else, without ever letting on what was going on. Some meetings were 'surreal', and I felt like I was going into another realm, ...but I got by, and made it to the finish line. I have been undetected for well over three years now, since ending tx, and am glad I did what had to be done.
Its not all without a price though, since in my case, I have plenty of tx. after-effects, which is easy to understand with all the interferon that I subjected myself to during a five year period. You have probably read my posts regarding post-tx problems, but that is another subject. I will deal with those issues actively until I get some resolution, or at least an understanding of how to manage them more successfully. Some may eventually subside, some may not. That's part of the game, and not really totally unexpected. I am just glad that I beat the virus, and it was all worth the effort, suffering, and expense.
I think you will also have success. Best of luck in your next round!!!!
DD
First tx was a 'by the book' dosing by the doc. He has several hcv patients, but I don't know if he'd be in the category of 'whiz-bang hcv guru'. I'm a 3a did 24 with PegIntron/800 mg and relapsed after tx. Rested about 9 months and going again with 1200 riba and switched to Pegasys for 46 weeks this time. Double dosed the Peg for 1st 4 weeks (und at week 2) and took riba for a week before shot#1 to build up the riba in the blood. This tx directed by 'one of those Univ. liverheads' but executed by same doc as 1st tx. He agreed to follow liverhead directions. Weight wasn't an issue for me, but the formula for tx #2 is basically longer and stronger.
MEDICAL PROFESSIONAL
You wrote:
My first question, is it possible that this result is in error? Am I wrong to want this confirmed by another test?
Chances are unfortunately quite low that this was a mistake. On the other hand, considering the important consequences, a repeat is not unreasonable. What would be of interest also is the dynamics of this "sudden??" increae from UND to 60000. Does it hold here? Is it the beginning of a spike? Is it the reflection of good power and specificity of the immune response to HCV that it stays this low? An "immune escape variant" with nevertheless low replictive fitness? The start of a real spike? A flare?
Q
. 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?
Response
The possibility that this is a short spike that will be spontaneously resupressed by your immune system is very remote.
Q
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.
Comment
There is clear benefit by losing weight in terms of protecting your liver from accelerated fibrosis. It is less clear if your immune system will gain substantially more functionality against the virus in a re tx to justify the wait for the weight loss.
The options to increase the antiviral effectiveness of a retreatment regimen are numerous. Several have been mentioned by other very proper comments here. One has to understand the concept of SOC - that is registration trial derived - and the enhancements that daring hepatologists prescribe based on conceptual understandings and smaller trials testing some of these concept. One of these key concepts is that rapid, intensive supression of the virus in the beginning of TX - "induction therapy" - combined with highest possible riba dosing is a critical component of success since it rapidly removes from the virus the capacity to a mutational adaptive response. Thats also where the good starting dose of riba comes in. This mutational power has to be struck down with maximum force, combined with the idea, that whatever adaptive mutation might arise - we give the "newly forming adapted" virion a second and third push to mutate itself even further- through the riba -that will render its useful 1st idea useless. Thus combinations of NonpegIFN with Pegifns, hgher doses in the beginning, more frequent doses to keep the IFN concentrations up continuously are all used to maximize the chances for later SVR.
That early response and its importance is also reflected in the predictive power of early - week 4 - UND.
You said you were UND at week 4 - by which test? It makes a huge difference in predictive power if you are UND by a 400 copy or a 5 copy limit test.
After that critical initial phase, reducing the now " invisible" amounts of virus even further is obviously the goal of further treatment. IF the UND at wk four would mean no more virus in the body, then we could stop treating right then.
No, basically the longer and harder you hit the " residuals" the higher the chances for SVR become. But this comes to the point, where the pain and the cost have to be weighed against the incremental increase in chances for SVR and also the increasing chance to harm your body with Tx toxicities that might stay with you after tx. To what extent this post tx syndrome is caused by "residual viral stimulation of the immune system" or by an "overstimulation syndrome" independent of any remnant virus presence is unclear, but likely both pathophysiologies will tske part to a varying degree in each case.
DD I would like to discuss with you at some point in time the possible diagnostic and interventional possibilities that might be available for a "post intense TX hyperimmune syndrome" as you seem to be suffering from.
There are other options that slowly emerge at this point to increase rates of treatment success. Many think early combo treatments will substantially further reduce the " intial replicative defense mechanisms" of the HCV. Some Drs might be willing to prescribe an addition of Thymosin alpha right from the start - import for such purposes is legal I understand- or use - once we have more clear info on its potencies and usefulness- off label Alinia as a component of the treatment or even both. It has to do with risk, liability, cost and trust and how it relates to a particular patients history and situation. To use a " fully maximized" formula for SVR success likelihood based on conceptual extapolation of small trial results you would have to either be an MD yourself or find one where mutual closeness and trust is as good as inside a family.
As you can see from patients in this forum, some have used a "sledgehammer" approach to achieve SVR and are paying some price for that too. Addition of a lesser toxic HCV specific antiviral might make it possible to up the chances without such high and long term toxicity and/or further increase in immune stimulation. The Vertex drug might be one such addition, or the Polymerase inhibitors or even that strange drug Nitazoxanide that we are currently wondering about....
I personally do not believe that a nontoxic cocktail without IFN/riba is at this time at the horizon. Addition drugs - for higher SVR chances with lower sides - yes.
.
My first question, is it possible that this result is in error? Am I wrong to want this confirmed by another test?
Chances are unfortunately quite low that this was a mistake. On the other hand, considering the important consequences, a repeat is not unreasonable. What would be of interest also is the dynamics of this "sudden??" increae from UND to 60000. Does it hold here? Is it the beginning of a spike? Is it the reflection of good power and specificity of the immune response to HCV that it stays this low? An "immune escape variant" with nevertheless low replictive fitness? The start of a real spike? A flare?
Q
. 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?
Response
The possibility that this is a short spike that will be spontaneously resupressed by your immune system is very remote.
Q
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.
Comment
There is clear benefit by losing weight in terms of protecting your liver from accelerated fibrosis. It is less clear if your immune system will gain substantially more functionality against the virus in a re tx to justify the wait for the weight loss.
The options to increase the antiviral effectiveness of a retreatment regimen are numerous. Several have been mentioned by other very proper comments here. One has to understand the concept of SOC - that is registration trial derived - and the enhancements that daring hepatologists prescribe based on conceptual understandings and smaller trials testing some of these concept. One of these key concepts is that rapid, intensive supression of the virus in the beginning of TX - "induction therapy" - combined with highest possible riba dosing is a critical component of success since it rapidly removes from the virus the capacity to a mutational adaptive response. Thats also where the good starting dose of riba comes in. This mutational power has to be struck down with maximum force, combined with the idea, that whatever adaptive mutation might arise - we give the "newly forming adapted" virion a second and third push to mutate itself even further- through the riba -that will render its useful 1st idea useless. Thus combinations of NonpegIFN with Pegifns, hgher doses in the beginning, more frequent doses to keep the IFN concentrations up continuously are all used to maximize the chances for later SVR.
That early response and its importance is also reflected in the predictive power of early - week 4 - UND.
You said you were UND at week 4 - by which test? It makes a huge difference in predictive power if you are UND by a 400 copy or a 5 copy limit test.
After that critical initial phase, reducing the now " invisible" amounts of virus even further is obviously the goal of further treatment. IF the UND at wk four would mean no more virus in the body, then we could stop treating right then.
No, basically the longer and harder you hit the " residuals" the higher the chances for SVR become. But this comes to the point, where the pain and the cost have to be weighed against the incremental increase in chances for SVR and also the increasing chance to harm your body with Tx toxicities that might stay with you after tx. To what extent this post tx syndrome is caused by "residual viral stimulation of the immune system" or by an "overstimulation syndrome" independent of any remnant virus presence is unclear, but likely both pathophysiologies will tske part to a varying degree in each case.
DD I would like to discuss with you at some point in time the possible diagnostic and interventional possibilities that might be available for a "post intense TX hyperimmune syndrome" as you seem to be suffering from.
There are other options that slowly emerge at this point to increase rates of treatment success. Many think early combo treatments will substantially further reduce the " intial replicative defense mechanisms" of the HCV. Some Drs might be willing to prescribe an addition of Thymosin alpha right from the start - import for such purposes is legal I understand- or use - once we have more clear info on its potencies and usefulness- off label Alinia as a component of the treatment or even both. It has to do with risk, liability, cost and trust and how it relates to a particular patients history and situation. To use a " fully maximized" formula for SVR success likelihood based on conceptual extapolation of small trial results you would have to either be an MD yourself or find one where mutual closeness and trust is as good as inside a family.
As you can see from patients in this forum, some have used a "sledgehammer" approach to achieve SVR and are paying some price for that too. Addition of a lesser toxic HCV specific antiviral might make it possible to up the chances without such high and long term toxicity and/or further increase in immune stimulation. The Vertex drug might be one such addition, or the Polymerase inhibitors or even that strange drug Nitazoxanide that we are currently wondering about....
I personally do not believe that a nontoxic cocktail without IFN/riba is at this time at the horizon. Addition drugs - for higher SVR chances with lower sides - yes.
.
RTS- I agree that you'd be well advised to get a consult with an aggressive hepatologist. IMHO, most gastro's are equipped for standard-issue Tx; however for the hard-to-treat HCV population a hepatologist is probably in order. I'm currently treating with a doc out here on the West coast; where are you located?
In any event, take real good care, and I'll be watching for upcoming info from you. Best of luck with this,
Bill
----------------------
Elaine-
Good to 'see' you as well! How is Nick feeling? Has he goten a refferal to UCD yet? I hope all is well for you both,
Bill
In any event, take real good care, and I'll be watching for upcoming info from you. Best of luck with this,
Bill
----------------------
Elaine-
Good to 'see' you as well! How is Nick feeling? Has he goten a refferal to UCD yet? I hope all is well for you both,
Bill
I wish you would not have used the F word because I am not sure how to diplomatically mention a MH friend who calls herself the same word. She felt it was a negative factor, and she WAS a geno 3. Did tx for two yrs. Has SVR. There was a question of a possible breakthrough at month 9 or 11, the reason for tx extension.
I played with some words in the searching and using the word 'efficacy' brought studys and abstracts that i did not get before;
http://www.clevelandclinicmeded.com/hcv/treatment.htm#retreatment
http://tinyurl.com/y65knh
http://tinyurl.com/t96gc
this result is not as clear to me;
http://www.medscape.com/viewarticle/537731_Tables
it seems the retreatment group had the same svr rate as tx naive?
too bad it does not state how much time elapsed bt treatments.
I played with some words in the searching and using the word 'efficacy' brought studys and abstracts that i did not get before;
http://www.clevelandclinicmeded.com/hcv/treatment.htm#retreatment
http://tinyurl.com/y65knh
http://tinyurl.com/t96gc
this result is not as clear to me;
http://www.medscape.com/viewarticle/537731_Tables
it seems the retreatment group had the same svr rate as tx naive?
too bad it does not state how much time elapsed bt treatments.
Sorry to hear about your relapse; I can feel your pain, big guy. I haven't been posting in here lately, but I saw your notes above and thought I'd weigh in on this topic. First, a little about me:
52 year old Caucasian male
Genotype 1a
Grade 2, stage 3.5
190 lbs
Diabetes M. type 2
Dx with HCV 12/04
Treated with Pegasys/ Copegus total 56 weeks, from 2/05 through 3/06.
Slow viral response at 12 week assay, so increased riba from assigned 1200 mg/day to 1800 mg/day.
Became undetectable to <50 IU by week 20.
Relapsed within 30 days post Tx.
9/15/06-begin re-treatment with Peg-intron 150 mcg/week, riba 2000 mg/day.
Now, the obligatory disclaimer; I certainly can't recommend this protocol, and if I did, it wouldn't come with any sort of authority. However, I'm more than happy to discuss my own Tx experiences with you, should you and your doctor decide to go this route.
At the beginning of my first Tx, I weighed about 240 lbs. Although I felt like hammered dog poo during the last session, I actually managed to gain weight, topping out around 255 lbs toward the end. As noted above, I had a slow response at the 12-week assay (missed the 2-log drop by 760 IU), and increased my ribavirin dosage to 1800 mg/day based on a number of factors. My Hgb was never seriously riba-challenged throughout last Tx, bottoming out at 13.2. Additionally, a small pilot study appeared in Feb 05 using high dose ribavirin with excellent results. Here's the addy:
http://www.hivandhepatitis.com/hep_c/news/2005/021105_a.html
And an excerpt from the study:
"...In the current pilot study, the objective was to evaluate the standard dose of peginterferon alfa-2a plus a daily dose of ribavirin that was individualized and calculated from a pharmacokinetic formula based mainly on renal function. In order to reach the targeted concentration of ribavirin in the blood serum, the study participants needed a mean ribavirin dose of 2,540 mg/day (range (1,600-4,000 mg/day). This equals more than double the currently recommended daily ribavirin dose...".
PLEASE keep in mind that this was a small pilot study, involving only 10 subjects: the results could therefore be construed as practically anecdotal However, as a stage 3-4, I felt that the risk-reward was there. My doctor had enough riba on hand to allow me to increase without involving insurance, but I relapsed nonetheless.
This treatment, I went into Tx dosed at 2000 mg/day. At my current weight of 190 lbs, this provides a ratio of 23.1 mg/kg.
Subjectively, I feel quite well so far; however, it's still early in the game. I'll do injection # 12 on 12/1, so there's plenty of time left for me to feel like cr@p, lol!
In terms of labs this time, my Hgb bottomed out at week five at 11.9; then rose slightly and stabilized/self-corrected around 12.2. The 4-week assay indicated undetectable per bDNA <615 IU, but detectable per TMA qual >5 IU.
The 8 week TMA then returned with undetectable to <5 IU. An additional note: my LFTs's never normalized during last Tx. ALT dropped to 72 at week 12, and then crept back up above 85 for the remaining treatment period. My doctor hypothesized that fatty infiltration (steatosis) might have been at play, although it wasn't mentioned in the narrative portion of the biopsy report. Having lost 60lbs + between treatments, this time my enzymes have been riding in the low to mid 20's.
That is my introduction; hopefully it answers some questions for you. Please feel free to bat this around with me if you like; I'm more than happy to answer any other questions that might arise.
Take good care,
Bill
52 year old Caucasian male
Genotype 1a
Grade 2, stage 3.5
190 lbs
Diabetes M. type 2
Dx with HCV 12/04
Treated with Pegasys/ Copegus total 56 weeks, from 2/05 through 3/06.
Slow viral response at 12 week assay, so increased riba from assigned 1200 mg/day to 1800 mg/day.
Became undetectable to <50 IU by week 20.
Relapsed within 30 days post Tx.
9/15/06-begin re-treatment with Peg-intron 150 mcg/week, riba 2000 mg/day.
Now, the obligatory disclaimer; I certainly can't recommend this protocol, and if I did, it wouldn't come with any sort of authority. However, I'm more than happy to discuss my own Tx experiences with you, should you and your doctor decide to go this route.
At the beginning of my first Tx, I weighed about 240 lbs. Although I felt like hammered dog poo during the last session, I actually managed to gain weight, topping out around 255 lbs toward the end. As noted above, I had a slow response at the 12-week assay (missed the 2-log drop by 760 IU), and increased my ribavirin dosage to 1800 mg/day based on a number of factors. My Hgb was never seriously riba-challenged throughout last Tx, bottoming out at 13.2. Additionally, a small pilot study appeared in Feb 05 using high dose ribavirin with excellent results. Here's the addy:
http://www.hivandhepatitis.com/hep_c/news/2005/021105_a.html
And an excerpt from the study:
"...In the current pilot study, the objective was to evaluate the standard dose of peginterferon alfa-2a plus a daily dose of ribavirin that was individualized and calculated from a pharmacokinetic formula based mainly on renal function. In order to reach the targeted concentration of ribavirin in the blood serum, the study participants needed a mean ribavirin dose of 2,540 mg/day (range (1,600-4,000 mg/day). This equals more than double the currently recommended daily ribavirin dose...".
PLEASE keep in mind that this was a small pilot study, involving only 10 subjects: the results could therefore be construed as practically anecdotal However, as a stage 3-4, I felt that the risk-reward was there. My doctor had enough riba on hand to allow me to increase without involving insurance, but I relapsed nonetheless.
This treatment, I went into Tx dosed at 2000 mg/day. At my current weight of 190 lbs, this provides a ratio of 23.1 mg/kg.
Subjectively, I feel quite well so far; however, it's still early in the game. I'll do injection # 12 on 12/1, so there's plenty of time left for me to feel like cr@p, lol!
In terms of labs this time, my Hgb bottomed out at week five at 11.9; then rose slightly and stabilized/self-corrected around 12.2. The 4-week assay indicated undetectable per bDNA <615 IU, but detectable per TMA qual >5 IU.
The 8 week TMA then returned with undetectable to <5 IU. An additional note: my LFTs's never normalized during last Tx. ALT dropped to 72 at week 12, and then crept back up above 85 for the remaining treatment period. My doctor hypothesized that fatty infiltration (steatosis) might have been at play, although it wasn't mentioned in the narrative portion of the biopsy report. Having lost 60lbs + between treatments, this time my enzymes have been riding in the low to mid 20's.
That is my introduction; hopefully it answers some questions for you. Please feel free to bat this around with me if you like; I'm more than happy to answer any other questions that might arise.
Take good care,
Bill
I must say, that you are truly a special case. Not too many RVRs out there that are negative for a few months post tx, and come back as a relapse case. Has your dr told you how unique your case is? I can not remember many people in your case, if any. Greg, from better angels post somewhere at the bottom of the page, was a similar case. He was negative early, neg at EOT, and at 6 months post tx, and came back pos at the year mark. I will never forget that post. It was around that time I had done my 6 mo post tx PCR with the exact same test he did. I was freaked out to no end. Not a good follow up statistically speaking. He finished his infergen tx and is now again neg at the 6 mo. mark. I believe he started tx shortly after finding out the virus had returned.
I have been looking for hours for studies on how soon to retreat because I was helping another friend in the same situation as you, before I saw your post.
Nothing found so far. I am going to try a different search engine than google.\
You are so correct in your speculation wondering what doses are going to work better than giving you a negative at wk 4? Your original tx did that, it gave you the RVR and svr until the 3 mo post tx PCR. What can you change except the tx duration? How to justify that? You were negative early. ARGH! you are too unique!
the original riba and inf doses were enough to get you a negative PCR in the blood.
I would love to see a research group take you on, and test you for all sorts of immune cells responses, and for testing PBMC and other tissues for hcv presence.
I think you are that special.
But if not, maybe doing what Greg did, pick up the pieces and retreat, to finally get the svr for real, forgetting the dynamics of how and why it did not happen with the first round...
At Last... Infergen and Hope - Better-Angels: 11/16/2006
if you feel the urgency to get this behind you, due to liver damage or other personal reasons, and the first tx did not cause significant physical damage, then it is up to you how soon you want to get going again.
If I find anything relevant while searching for the other MH member in the same situation, I will post it here.
I have been looking for hours for studies on how soon to retreat because I was helping another friend in the same situation as you, before I saw your post.
Nothing found so far. I am going to try a different search engine than google.\
You are so correct in your speculation wondering what doses are going to work better than giving you a negative at wk 4? Your original tx did that, it gave you the RVR and svr until the 3 mo post tx PCR. What can you change except the tx duration? How to justify that? You were negative early. ARGH! you are too unique!
the original riba and inf doses were enough to get you a negative PCR in the blood.
I would love to see a research group take you on, and test you for all sorts of immune cells responses, and for testing PBMC and other tissues for hcv presence.
I think you are that special.
But if not, maybe doing what Greg did, pick up the pieces and retreat, to finally get the svr for real, forgetting the dynamics of how and why it did not happen with the first round...
At Last... Infergen and Hope - Better-Angels: 11/16/2006
if you feel the urgency to get this behind you, due to liver damage or other personal reasons, and the first tx did not cause significant physical damage, then it is up to you how soon you want to get going again.
If I find anything relevant while searching for the other MH member in the same situation, I will post it here.
Thanks for the help. I always thought I was special and now I know it! LOL. This is not quite the special I envisioned as it does not involve applause and shiny trophies. Ya know, I just was reading Dr. Cecils thread - because he is so pro tx - and he said that once you get 3 months post tx negative you have 95% chance of success. What the heck was it that happened to lose this thing. I did have some major gum work after that 3 month PCR. I wonder if all that blood somehow contained some active virus that worked its way back into the bloodstream? Sounds crazy when I say it though.
I also must admit that I wasnt living the healthiest lifestyle basically eating anything I wanted without a care at all. Lost 40 pounds on tx and was working it back on. Perhaps this stressed out the liver or immune system somehow. Also, had some serious back problems for which I was given percocet and popped a fair amount of those - maybe Tylenol stressed liver and virus reemerged. Find all that kind of hard to buy though because I didnt get the impression that SVR was all that finicky.
At any rate, I really really thank you guys for your thoughts. I am ready to retreat tonight if I could. My selective memory has all but blocked out my previous tx. At stage 2-3 though I am somewhat reluctant to jump in too fast. The first thing I am going to do is get another PCR. The second is get a doctor who knows a bit more about using Riba on fat guys. The third is to - well I dont know the third yet but I will soon - maybe it will involve that research team - that sounds good - I need a team working on this one. Perhaps its the fact the my second toe is longer than my big toe - I always thought that was a problem. LOL
I also must admit that I wasnt living the healthiest lifestyle basically eating anything I wanted without a care at all. Lost 40 pounds on tx and was working it back on. Perhaps this stressed out the liver or immune system somehow. Also, had some serious back problems for which I was given percocet and popped a fair amount of those - maybe Tylenol stressed liver and virus reemerged. Find all that kind of hard to buy though because I didnt get the impression that SVR was all that finicky.
At any rate, I really really thank you guys for your thoughts. I am ready to retreat tonight if I could. My selective memory has all but blocked out my previous tx. At stage 2-3 though I am somewhat reluctant to jump in too fast. The first thing I am going to do is get another PCR. The second is get a doctor who knows a bit more about using Riba on fat guys. The third is to - well I dont know the third yet but I will soon - maybe it will involve that research team - that sounds good - I need a team working on this one. Perhaps its the fact the my second toe is longer than my big toe - I always thought that was a problem. LOL
You might want to reaccess your liver damage with a good hepatoloigst before making any decisions -- be it needle biopsy, fibroscan, fibrosure or some combination.
If you liver damage hasn't progressed, taking a year or two to get down to your ideal weight has a number of advantages. First, a lower BMI (body mass index) is associated with better SVR outcomes, as well as a slower progression of Fibrosis. But perhaps more important, if you're actually 100 pounds over your ideal weight, the health consequences of not losing that weight may be more serious at this point than the virus itself. Another reason to wait -- again assuming no fibrosis progression -- is to factor in the SVR trial data from VX-950 which will be flowing in all throughout 2007.
The alternative seems to be what some are calling the "sludgehammer " approach, be it high-dose riba, more extended SOC, infergen, something more experimental, or some combination. Perhaps if you weren't an RVR -- as HR suggested, check the sensitiviy of those tests -- the path might be clearer. But assuming you were an RVR, to me a future path is less clear.
All the best in whatever you decide.
-- Jim
If you liver damage hasn't progressed, taking a year or two to get down to your ideal weight has a number of advantages. First, a lower BMI (body mass index) is associated with better SVR outcomes, as well as a slower progression of Fibrosis. But perhaps more important, if you're actually 100 pounds over your ideal weight, the health consequences of not losing that weight may be more serious at this point than the virus itself. Another reason to wait -- again assuming no fibrosis progression -- is to factor in the SVR trial data from VX-950 which will be flowing in all throughout 2007.
The alternative seems to be what some are calling the "sludgehammer " approach, be it high-dose riba, more extended SOC, infergen, something more experimental, or some combination. Perhaps if you weren't an RVR -- as HR suggested, check the sensitiviy of those tests -- the path might be clearer. But assuming you were an RVR, to me a future path is less clear.
All the best in whatever you decide.
-- Jim
I meant to address your theories for relapse; dental work, pain killers, bad diet, etc Not likely, your brain is telling you, and you know it is correct!
If I would have relapsed I would have been blaming the CTS release surgery, the dental work, the antibiotics, the champagne at daughter's wedding or the mojito, stress at work, driving too fast, flipping the finger too much, etc. It does not work that way and you know it.
HCV was still there, probably held back by some powerful t cells or something. What finally let the dogs out, it is anybodys guess, most likely the super powers exhibited by hcv. But, it responds to tx, and that is the plus side. You know, since you are so unique, you could end up like pharoah, another member here. Like you, negative through tx and at eot, negative also. Post tx, he had two PCRs that showed a positive vl. Then, the next PCR was negative and have been for two yrs. What the heck happened in that case? another hcv puzzle.
If I would have relapsed I would have been blaming the CTS release surgery, the dental work, the antibiotics, the champagne at daughter's wedding or the mojito, stress at work, driving too fast, flipping the finger too much, etc. It does not work that way and you know it.
HCV was still there, probably held back by some powerful t cells or something. What finally let the dogs out, it is anybodys guess, most likely the super powers exhibited by hcv. But, it responds to tx, and that is the plus side. You know, since you are so unique, you could end up like pharoah, another member here. Like you, negative through tx and at eot, negative also. Post tx, he had two PCRs that showed a positive vl. Then, the next PCR was negative and have been for two yrs. What the heck happened in that case? another hcv puzzle.
this list needs a bit updating, but it is a good summary, there might be another one out there and someone might have it bookmarked, but until then, this will do:
http://www.hivandhepatitis.com/hep_c/news/2005/ad/102605_a.html
http://www.hivandhepatitis.com/hep_c/news/2005/ad/102605_a.html
Thanks for your analysis - my 4 week PCR was a Quant Real Time PCR using Roche COBAS Taqman Analyte Specific Regeant which I believe measures to 75 copies. To summarize your comments, I think you are saying that if another PCR is positive then retreatment may be indicated and that weight loss alone cannot justify the wait and that I should be looking for a doc who is willing to be more aggressive escpecially in the beginning of treatment but not so aggresive with the SOC that I will be damaged for life but more aggressive in terms of adding some of the newer safer regimes that are out there. However in order to get a doc to do this I have to have him in my family. Thats sounds pretty straightforward. LOL. At any rate, thank you very much for the well thought out response. You are such a great addition to this forum. It is absolutely a blessing to have you around. Thanks again.
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.
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.
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
I noticed you have the same exact PCR I did. Pretty poor! 75IU is like 200 copies, so you really don't know if you were UND to a low amt. with that test. I was fooled as well. HR mentions another good test, not sure my ins. will cover it, but I plan on getting one, even though I may have to pay. HEre PCR's are $250. Not sure about the most sensitive....
Also, I know that dental work can release bacteria and maybe virus. My x had to take antibiotics when he went to the dentist after having a heart valve infections years earlier.
Also, I know that dental work can release bacteria and maybe virus. My x had to take antibiotics when he went to the dentist after having a heart valve infections years earlier.
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
DD: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.
-----------------------------------------------------------
Could you please expand/clarify what you mean by "doing anything tht might 'retard' the immune system". Are you talking about drugs, alcohol, diet, what?
What "few late relapses" are you referring to? Are these post SVR relapsers? And if so, are you talking classical relapse, i.e serum negative to serum positive, or are you talking about finding virus in compartments other than serum post SVR?
I mention this because it still appears that relapse -- as defined by finding virus in serum -- after SVR is quite rare.
All the best,
-- Jim
-----------------------------------------------------------
Could you please expand/clarify what you mean by "doing anything tht might 'retard' the immune system". Are you talking about drugs, alcohol, diet, what?
What "few late relapses" are you referring to? Are these post SVR relapsers? And if so, are you talking classical relapse, i.e serum negative to serum positive, or are you talking about finding virus in compartments other than serum post SVR?
I mention this because it still appears that relapse -- as defined by finding virus in serum -- after SVR is quite rare.
All the best,
-- Jim
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