Aa
Immune Response or Resilient Strains
We all know some people clear the virus easier than others. I question whether that's because some people are unlucky enough to have a tougher strain of the virus, or whether it has more to do with the individual's immune response and their reaction to the treatment meds.
Based on an unscientific connecting of the dots, I'd guess it's in this order:
1) Some immune systems are better at attcking the bug..
2) Some people respond better to the meds, either the INF triggers a stronger response, or the RIBA is cleared more slowly, or other..
3) Stonger strains, different quasispecies replication, junk like that...
It would be interesting to hear other opinions.
Based on an unscientific connecting of the dots, I'd guess it's in this order:
1) Some immune systems are better at attcking the bug..
2) Some people respond better to the meds, either the INF triggers a stronger response, or the RIBA is cleared more slowly, or other..
3) Stonger strains, different quasispecies replication, junk like that...
It would be interesting to hear other opinions.
The tx does have antifibrotic properties. I know you said you had progressed some even on tx but I would think it could have held it back compared to if you hadn't kept on a regimen of ifn. It has kept the virus very small and probably slowed progression. It certainly kept your viral load very low and that is a good thing. My feeling about tx is just because we aren't 100% succesful in ridding it from our bodies doesn't mean the tx didn't benefit our health. If you felt ok on tx then why not try it. I think in your shoes I too would have kept at it in some fashion like you have, if I wasn't having sx's that were hard to handle. I am sure it worked like maintenance therapy and lots of people do that. My doctor recommends it if this second round doesn't work, but I don't think the ins. will go for it.
I was just curious because the doctors ok'ed it and the ins. continued to pay. It probably helped that you changed companies through work a few times too. You have had good companies compared to mine, that's for sure.
I'm sorry if you felt I was saying you shouldn't have done it, that wasn't what I meant at all, I just wondered how you got them to cover it.
I was just curious because the doctors ok'ed it and the ins. continued to pay. It probably helped that you changed companies through work a few times too. You have had good companies compared to mine, that's for sure.
I'm sorry if you felt I was saying you shouldn't have done it, that wasn't what I meant at all, I just wondered how you got them to cover it.
Yes, I told them all and brought my medical records, too. Who knows, maybe I should not have treated all those times, but I did it and now it's over with and I can't go back.
Susan
Susan
I swim laps too. Not hard core, but I used to like to bang out 20 or so 3-4 times a week. I'm now able to do about 10. Anymore and I really feel like I could pull something as my stroke becomes unstable and I start flopping about like Rosanne Barr doing the jumping-jacks. I think by the end of summer I should be in better form. I had to stop at about week 3 of tx - I could barely tread water :(
Good luck and best wishes Kathy. 56 wks is a long haul.
Good luck and best wishes Kathy. 56 wks is a long haul.
I had 3 different doctors over the course of the years that I've treated. My husband's work/insurance changed over the years, so it wasn't the same insurance company. I started out with just reg. Intron-A/Ribavirin. Then after full treatment of that went to maintenance. Then, to Infergen. I did Peg-Intron. I did Pegasys. I did double dosing. I did Infergen/Actimmune/Riba.
and on and on and on. Now, I'm stopped with Interferon and with Riba. It never worked on me and I've probably developed resistance to Interferon and to Riba. I'm hoping for the Vertex drug which should be out in a couple of years, might do something.
Susan
and on and on and on. Now, I'm stopped with Interferon and with Riba. It never worked on me and I've probably developed resistance to Interferon and to Riba. I'm hoping for the Vertex drug which should be out in a couple of years, might do something.
Susan
I question about the 8 times on interferon to I don't know any docter that would do that
Thanks, goof. These last weeks are rough just because I question why I am doing them and think - oh yeah, you could quit today...... Still, reading this board, I pushed for sensitive PCRs. Now what good was that if I don't turn that information into something useful (oh, extending treatment is useful? - I thought it was masochistic).
Still, I was absolutely shocked at my lack of endurance in swimming. I wonder how Jim is doing -- seems like that he had posted post tx that he expected to be 50 laps in an Olympic sized pool after a few months post tx. That is a long ways! I can see where it will take a long long time to get back to a mile, which is what I could do if I had the time (which I do't if I swim during my lunch hour).
Kathy
Still, I was absolutely shocked at my lack of endurance in swimming. I wonder how Jim is doing -- seems like that he had posted post tx that he expected to be 50 laps in an Olympic sized pool after a few months post tx. That is a long ways! I can see where it will take a long long time to get back to a mile, which is what I could do if I had the time (which I do't if I swim during my lunch hour).
Kathy
I am wondering how did you get the doctor to treat you that many times? Did ins. pay for it? I haven't found a doctor who would continue if I didn't achieve UND status at some point.
I am just curious because I know people have a hard time getting ins co.'s to pay for one retreatment even if they did reach UND. so I am wondring how you did it. What did the doctor think woud be gained by retreating 8 times? Were some of the tx's maintenance to keep the virus at bay or was it traditional Riba/IFN tx 8 times?
I mentioned your case to my doctor and he said he would not allow it but might have used maintenance. I said you had "treated 8 times" and I didn't know the details of each of your tx's.
Are you starting to feel better now that you are not on the drugs?
I am just curious because I know people have a hard time getting ins co.'s to pay for one retreatment even if they did reach UND. so I am wondring how you did it. What did the doctor think woud be gained by retreating 8 times? Were some of the tx's maintenance to keep the virus at bay or was it traditional Riba/IFN tx 8 times?
I mentioned your case to my doctor and he said he would not allow it but might have used maintenance. I said you had "treated 8 times" and I didn't know the details of each of your tx's.
Are you starting to feel better now that you are not on the drugs?
Good question. I too would like to know why some clear easier than others. I have always been known for a healthy immune system -- have missed very few days of work in 30 years. I rarely get the flu and normally just a sore throat once every 2 years or more. Genetics. I have probably had the virus for 35 years (1a) yet was only 1/1. Healthy immune system, I guess. Still, I was not clear at week 12.
I attribute not being clear at 12 to a stubborn virus. The jury is still out on SVR. My 48 week PCR was 06/16 and the results should be in soon. I will do another at 56 - my end date. All PCR's have been clear since week 20.
The other thing I wonder about is why the sides hit some harder than others. Any ideas there? I do think the more the liver damage the harder the sides, but that isn't all of it. Many who have little damage have big sides. My thoughts there are that it has a lot to do with body sensitivity. I don't feel that I have a sensitive system. Stomach of iron -- that kind of thing -- and maybe I just don't notice things that would knock others out. Once again, it is all genetics.
Glad to hear you are returning to normal. I swam my 6 yo grandson across a river yesterday and realized how much of my swimming ability has been lost (realized it was a really really bad idea when we were still 15 feet from shore- fortunately he had total trust in me). I have swam laps for years but not the last year - and was shocked at my muscle loss and fatique. We made it just fine, and back again, but I have a lot of work to do after tx.
kathy
I attribute not being clear at 12 to a stubborn virus. The jury is still out on SVR. My 48 week PCR was 06/16 and the results should be in soon. I will do another at 56 - my end date. All PCR's have been clear since week 20.
The other thing I wonder about is why the sides hit some harder than others. Any ideas there? I do think the more the liver damage the harder the sides, but that isn't all of it. Many who have little damage have big sides. My thoughts there are that it has a lot to do with body sensitivity. I don't feel that I have a sensitive system. Stomach of iron -- that kind of thing -- and maybe I just don't notice things that would knock others out. Once again, it is all genetics.
Glad to hear you are returning to normal. I swam my 6 yo grandson across a river yesterday and realized how much of my swimming ability has been lost (realized it was a really really bad idea when we were still 15 feet from shore- fortunately he had total trust in me). I have swam laps for years but not the last year - and was shocked at my muscle loss and fatique. We made it just fine, and back again, but I have a lot of work to do after tx.
kathy
sorry to hear that...we were very close and i took care of him for 2 years..he was given 8 months..lasted longer..when he begged me no more transfusions and just morphine knew he was ready to go..still grieve and always will miss him,he is better off now..the end was horrible..but inevitable..time heals but remeber the good times with him..my mother cheated me out of his will in the end and now we haven't spoken in years..she remarried 6 months off the meeting of a leach off the intrnet..and alienated me nd my family..i forgive her can't hold grudges not good for the soul..
I also lost my father when he was quite young, he died when he was only 50, stomach cancer. When he found out they sid it was too late and gave 6 months to live. Scarey. We were not close though, I only met him a couple of times.
I believe that in my case it's because of having two genotypes, 1A and 1B. I mean there's not a whole lot of people out there that have treated 8 times and have never gone undetected. I don't feel that it has anything to do with my diet, attitude, etc., etc. I never even needed anti-D's with my treatments and I exercised every day, either walking or riding stationary bike. I just think that I have a very resistant case of Hep C and that now, I've developed interferon resistance. Since, I mean, I've tried several different types of interferon.
I had a really hard night last night with insomnia. For some reason, that always seems to get worse after stopping treatment.
Well, take care everybody.
Susan
I had a really hard night last night with insomnia. For some reason, that always seems to get worse after stopping treatment.
Well, take care everybody.
Susan
i have often wondered about the mutation of strains also. in theory the virus will mutate to survive. of course attitude is a great player..i use biofeedback to lower my response to issues. when your body is going crazy it does directly correlate to your parasympathetic,sympathetic systems in your body..all i can say is to breathe ...and hope the virus and meds do their jobs.
as for the loss of friends,family of all..it is important to treat to prolong the damage done to the liver. we are in essense buying time until the wonder tx comes aong. i beat cancer already, so this i will beat also...i lost my dad at 54 to rare cancer. we all need to be positive and to those that are no longer with us feel rest assured they are at a better place and no longer in pain or suffering...best wishes..time heals..
as for the loss of friends,family of all..it is important to treat to prolong the damage done to the liver. we are in essense buying time until the wonder tx comes aong. i beat cancer already, so this i will beat also...i lost my dad at 54 to rare cancer. we all need to be positive and to those that are no longer with us feel rest assured they are at a better place and no longer in pain or suffering...best wishes..time heals..
My hubby is having a difficult time sleeping now as well, he is 2 weeks post tx.
I really thought the sleeping problems would be the first thing to go away.
I really thought the sleeping problems would be the first thing to go away.
It doesn't hit you so much, but it hits me, lame jokes when youre in a hurry....meant something about not worrying about me hi-jacking your car, can't get any more lame then that...don't ever let me do stand-up, I'd be pelted to death...
Thought this was interesting from the Projects of Knowledge, for those interested...
ViroPharma Incorporated released data at the latest Digestive Disease
> Week (DDW) conference regarding their new experimental Hepatitis C
> drug, HCV-796. The drug, currently being tested in a phase 1b trial,
> is an oral non-nucleoside polymerase inhibitor that works by
> interfering with replication of the hepatitis C virus (HCV). The
> randomized, double-blind, placebo-controlled trial involved
> treatment-naive patients chronically infected with HCV (72% of whom
> were infected with genotype 1). Patient cohorts were assigned oral
> doses of HCV-796 of 50, 100, 250, 500, 1000, or 1500 mg, or placebo,
> BID for 2 weeks. Results indicated that peak antiviral response was
> achieved with doses of 500 mg BID and higher. On day 4, these groups
> reached HCV viral load reductions of 96% to 97%. HCV-796 was well
> tolerated and caused no serious side effects in the 14-day trial.
> Mild-to-moderate headache was the most common side effect.
To view entire press release, go to
http://tinyurl.com/pq4wq
Thought this was interesting from the Projects of Knowledge, for those interested...
ViroPharma Incorporated released data at the latest Digestive Disease
> Week (DDW) conference regarding their new experimental Hepatitis C
> drug, HCV-796. The drug, currently being tested in a phase 1b trial,
> is an oral non-nucleoside polymerase inhibitor that works by
> interfering with replication of the hepatitis C virus (HCV). The
> randomized, double-blind, placebo-controlled trial involved
> treatment-naive patients chronically infected with HCV (72% of whom
> were infected with genotype 1). Patient cohorts were assigned oral
> doses of HCV-796 of 50, 100, 250, 500, 1000, or 1500 mg, or placebo,
> BID for 2 weeks. Results indicated that peak antiviral response was
> achieved with doses of 500 mg BID and higher. On day 4, these groups
> reached HCV viral load reductions of 96% to 97%. HCV-796 was well
> tolerated and caused no serious side effects in the 14-day trial.
> Mild-to-moderate headache was the most common side effect.
To view entire press release, go to
http://tinyurl.com/pq4wq
No worries...so never worry. T'was this which had me puzzled:
and hope you don't mind me hi-jacking, youre car is okay with me too...he he
I was not at nice person on tx, can't remember having too many "happy" thoughts for about 14 months and cleared anyway. I agree with goofydad. But, seriously, it's just a **** shoot. You do your meds and just hang on with your fingernails for the duration. I got very, very, very lucky.
you didn't do anything to apologize for, I know what migraines are, had one last night, but it was only a 4, once we get those 9's, whoa nellie...best of luck to you, you'll be okay...
oh gee, hope you weren't offended, just meant that I couldn't fathom that math calculation last night...but I looked at it again with the brightness of the day, and viola! I figured it out!
Hey Goof, hope youre doing okay my friend...and hope you don't mind me hi-jacking, youre car is okay with me too...he he
Merlino: please don't think I'm any expert on tx, haven't even tried the stuff, just a lot of researching, personal and otherwise....
To a fello migraine sufferer...i've heard it both ways, that maybe tx can even alleviate the migraines, or make them worse...or they stay about the same....
My take away point with tx is that it could so many ways with so many different people, it's all over the place...you just don't know for sure till you try it yourself....
But always remember, this is just a patient-to-patient hep c board, while it's great for getting a "concensus" about a lot of things re hep c, treatment, etc and there are a lot of very knowlegable people here, I would be lost without these boards, cause I've had some hack docs in my time...there are no professionals here, most things you have to ask your doctor(s) about and check with them...
Merlino: please don't think I'm any expert on tx, haven't even tried the stuff, just a lot of researching, personal and otherwise....
To a fello migraine sufferer...i've heard it both ways, that maybe tx can even alleviate the migraines, or make them worse...or they stay about the same....
My take away point with tx is that it could so many ways with so many different people, it's all over the place...you just don't know for sure till you try it yourself....
But always remember, this is just a patient-to-patient hep c board, while it's great for getting a "concensus" about a lot of things re hep c, treatment, etc and there are a lot of very knowlegable people here, I would be lost without these boards, cause I've had some hack docs in my time...there are no professionals here, most things you have to ask your doctor(s) about and check with them...
It is probably all of the above but one's life history may have some bearing. If there are six types of this hepc bug and sub groups then you would think there are other key elements that come into play from the source. The drugs are developed for specific test groups but unseen variations may slip by this testing. Virus' might be like flu's in that they have natural mutation processes to survive. In watching this bird flu issue it seems that a vacine that is good today may be worthless next month due to the change in the flu bug itself. Their own immune devise sets off changes in their own make up just to survive. That was a great comment though and thought provoking. Why's always are. Have a good one. Dale
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