Aa
PCR Level
I am 1b and in my 9th week of Pegasys/copegus treatment. I have experienced side effects but not intolerable. My doc does PCR test every two weeks and my level has increased 4x in 8 weeks. My liver function tests have actually improved slightly but the PCR has my doc stumped, never seen it before. He has agreed to keep me on the treatment for 12 weeks but then if I don't have 100fold improvement he says my expected success rate goes down to 3%. He said he would then try me on another treatment which is less successful but might work for me. Anyone else had this problem or anything like it?
I think that is a great idea. I agree so much. Having HCV has taught me so many positive things, all those you mention are foremost. I think it would be healing to have a "focus on the positive" thread around here! I know that is what has kept me going through this.It sure has taught me a lot about people and fear and so many other things.
I have learned an incredible amount since tx began, thank goodness I have my "window to the world" to use to learn while Im laid up or I'd have gone bonkers by now. I don't know how you muster the energy for classes. Must be all that good stuff you are doing. My plan is to focus on grass roots fund raising and awareness once I am through this. I think this area is ideal for fundraising and I have some local connections that can really help to get people educated and tested. I still plan on continuing my business ventures but I feel compelled to speak out about HCV and see if I can help. Once I take on a cause it's hard to stop me!
I didn't know you were in school, WOW that is a lot to take on on tx. I know we have had a few students visit the board and I always feel for them, my brain is not at it's optimum on this stuff, studying would be a big challenge. It takes such commitment! You are brave to do that.What are you studying?
I read a couple of studies where they gave advanced damage patients interferon for 2 years and they had a much more solid success rate and I have not had any blood issues so the doc let me continue. Plus I am hoping for improvement and as you point out, it seems to be working so far. Maybe that is just due to being UND or my weight loss and nutritional changes and not the interferon but who knows. Im just happy that it appears I was rescued from the brink by tx. when I was starting treatment, I couldn't get any support with double dosing from the doc and I chose my own path then and did it because it made sense to me, then as time went by you began to read about double dosing success and killing the virus early on, so Im glad I went that route.
I figure why not try the tapering method at the end which also makes sense. I am going to taper the Riba down too. Matter of fact, I am doing that now and reducing from 1200 a day down to 800 over the next month to hopefully help my QOL for these last months. If I can taper down both drugs and my PCR's stay UND at say a half or quarter dose, I will be ecstatic. I've thought about tapering it and keeping a "tiny bit" as HR called it in my body as " a layer of protection" (as he calls it ) for as long as the meds last. If I do that, I would be on it longer but at a tiny dose. My liver went in the bucket in less than a decade so Im concerned about the geno 3 aggressiveness factor I've been reading about this year. You mentioned a study regarding this tapering method, do you happen to have it around? I'd like to read it.
It's scary to reduce the drugs but I have been UND for so long now I figure I should give it a shot and hope my immune system is through with remedial body defense lessons!
You know how it is with exercise, sometimes it takes a back seat ( as well it should) when you are on tx. With school on top of it, Im not suprised exercise has slacked a bit. You will be back at it when you feel up to it!
I have learned an incredible amount since tx began, thank goodness I have my "window to the world" to use to learn while Im laid up or I'd have gone bonkers by now. I don't know how you muster the energy for classes. Must be all that good stuff you are doing. My plan is to focus on grass roots fund raising and awareness once I am through this. I think this area is ideal for fundraising and I have some local connections that can really help to get people educated and tested. I still plan on continuing my business ventures but I feel compelled to speak out about HCV and see if I can help. Once I take on a cause it's hard to stop me!
I didn't know you were in school, WOW that is a lot to take on on tx. I know we have had a few students visit the board and I always feel for them, my brain is not at it's optimum on this stuff, studying would be a big challenge. It takes such commitment! You are brave to do that.What are you studying?
I read a couple of studies where they gave advanced damage patients interferon for 2 years and they had a much more solid success rate and I have not had any blood issues so the doc let me continue. Plus I am hoping for improvement and as you point out, it seems to be working so far. Maybe that is just due to being UND or my weight loss and nutritional changes and not the interferon but who knows. Im just happy that it appears I was rescued from the brink by tx. when I was starting treatment, I couldn't get any support with double dosing from the doc and I chose my own path then and did it because it made sense to me, then as time went by you began to read about double dosing success and killing the virus early on, so Im glad I went that route.
I figure why not try the tapering method at the end which also makes sense. I am going to taper the Riba down too. Matter of fact, I am doing that now and reducing from 1200 a day down to 800 over the next month to hopefully help my QOL for these last months. If I can taper down both drugs and my PCR's stay UND at say a half or quarter dose, I will be ecstatic. I've thought about tapering it and keeping a "tiny bit" as HR called it in my body as " a layer of protection" (as he calls it ) for as long as the meds last. If I do that, I would be on it longer but at a tiny dose. My liver went in the bucket in less than a decade so Im concerned about the geno 3 aggressiveness factor I've been reading about this year. You mentioned a study regarding this tapering method, do you happen to have it around? I'd like to read it.
It's scary to reduce the drugs but I have been UND for so long now I figure I should give it a shot and hope my immune system is through with remedial body defense lessons!
You know how it is with exercise, sometimes it takes a back seat ( as well it should) when you are on tx. With school on top of it, Im not suprised exercise has slacked a bit. You will be back at it when you feel up to it!
Yeah I know, it's like the neverending tx story. The doc extended me for another 6 months past the 72 week mark since my bloodwork looked good. I am due to finish in July. Im thinking about tapering down the drugs so I am just doing a small dose by the end but I haven't decided on that one yet.If taking less keeps the virus UND and also allows me to function more, Im all for it. HR is the one who suggested such a course of action, slowly lowering the drugs. Not much info on such an approach out there to butress the plan but common sense tells me that backing off the Interferon slowly might allow my body to start making it's own and help me to avoid relapse. Im worried I won't qualify for help for maintenance drugs, but Im forcing myself to not worry on that yet, I could still clear the virus with some luck.
My enzymes are down in the 20's, Im pleased about that. Platelets are in the 130 range, so they have doubled, another good sign. Im hoping they normalize when I stop the meds. I can dream anywayLOL
I think about you every day I take my walk, I know you are right on with the exercise and diet regime and I am following in your footsteps. I lost the extra pounds and have been pushing myself to improve my strength. I can only manage about a mile at this point, I bet you are up to 10 miles a day! Im also using small weights to train with. Im hoping to work back up to being able to do Pilates soon. I was doing Pilates and had a personal trainer when I found out I had this disease, I hope to get back to it.
How is your tx going? Is your bloodwork holding up? I hear you guys had some spring SNOW up there! I hope things are clicking along for you this round and you are not too sidelined by tx. I know you have been through so much with this disease yet you keep your eye on the ball and keep such a positive attitude and have made such positive lifestyle changes that are bound to be helping. When I get down about all of this I remind myself of your journey to keep myself in check.
My hubby is getting the final (hopefully!) on his 3 mil. dollar condo project he has been working on this year today, time to move on to the next building site. The building is incredibly beautiful, he did a great job. Too bad the rich woman who owns it decided to design the interior herself, boy did she botch it up. Here she had an absolutely stunning spanish style building with all the right accoutrements, copper downspouts, beautiful hand wrought iron and details details details and she designs the interior Modern/Asian with BLACK floors. The architect actually GASPED when he walked in. Poor guy, I thought he was going to pass out. He said " I can't see this" and left the building. Oh well, you know what they say, there is no accounting for taste.
Got our own project in the works, have to run the planning commission gauntlet soon and in this town, that is no easy feat.
I keep you in my prayers!
My enzymes are down in the 20's, Im pleased about that. Platelets are in the 130 range, so they have doubled, another good sign. Im hoping they normalize when I stop the meds. I can dream anywayLOL
I think about you every day I take my walk, I know you are right on with the exercise and diet regime and I am following in your footsteps. I lost the extra pounds and have been pushing myself to improve my strength. I can only manage about a mile at this point, I bet you are up to 10 miles a day! Im also using small weights to train with. Im hoping to work back up to being able to do Pilates soon. I was doing Pilates and had a personal trainer when I found out I had this disease, I hope to get back to it.
How is your tx going? Is your bloodwork holding up? I hear you guys had some spring SNOW up there! I hope things are clicking along for you this round and you are not too sidelined by tx. I know you have been through so much with this disease yet you keep your eye on the ball and keep such a positive attitude and have made such positive lifestyle changes that are bound to be helping. When I get down about all of this I remind myself of your journey to keep myself in check.
My hubby is getting the final (hopefully!) on his 3 mil. dollar condo project he has been working on this year today, time to move on to the next building site. The building is incredibly beautiful, he did a great job. Too bad the rich woman who owns it decided to design the interior herself, boy did she botch it up. Here she had an absolutely stunning spanish style building with all the right accoutrements, copper downspouts, beautiful hand wrought iron and details details details and she designs the interior Modern/Asian with BLACK floors. The architect actually GASPED when he walked in. Poor guy, I thought he was going to pass out. He said " I can't see this" and left the building. Oh well, you know what they say, there is no accounting for taste.
Got our own project in the works, have to run the planning commission gauntlet soon and in this town, that is no easy feat.
I keep you in my prayers!
Sorry to hear you don't seem to be responding to treatment. If I was in your shoes I would not proceed doing the same treatment that is not working however I think Bill gives excellent advice on options to try if you decide to continue treatment in some reconoitered form.
If it was me, I'd switch interferons and increase the Riba and see what happens for a month and if the viral load persisted I'd think of other options. If that doesn't work, there are several nonresponder trials recruiting now. You don't want to take these meds if they are not doing you any good and killing the virus.
Here is a link about the nonresponder Phase III trial for Infergen.
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=109&STORY=/www/story/06-15-2004/0002193243&EDATE
They are also recruiting now or will be soon for the Vertex trials using nonresponders, I don't have the info for that but maybe someone else on the board does, hopefully they will post it.
Those are two I can think of that will be using nonresponders if you are going to try a trial.
I would look at clinicaloptions.com and read their info and watch their videos on nonresponsive patients. You have to sign up for it but it is WELL worth the effort. It is a great site with excellent info about treatment for HCV.
Keep us posted.
If it was me, I'd switch interferons and increase the Riba and see what happens for a month and if the viral load persisted I'd think of other options. If that doesn't work, there are several nonresponder trials recruiting now. You don't want to take these meds if they are not doing you any good and killing the virus.
Here is a link about the nonresponder Phase III trial for Infergen.
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=109&STORY=/www/story/06-15-2004/0002193243&EDATE
They are also recruiting now or will be soon for the Vertex trials using nonresponders, I don't have the info for that but maybe someone else on the board does, hopefully they will post it.
Those are two I can think of that will be using nonresponders if you are going to try a trial.
I would look at clinicaloptions.com and read their info and watch their videos on nonresponsive patients. You have to sign up for it but it is WELL worth the effort. It is a great site with excellent info about treatment for HCV.
Keep us posted.
http://www.prove3.com/index.html
This is the link for the Prove 3 Vertex trial for non-responders.
This is the link for the Prove 3 Vertex trial for non-responders.
Gary
Your viral level is going up drastically while on treatment is what you are saying?
I then agree and believe that some drastic change need be made IMMEDIATELY. If the medication is not working - it's not working. Your viral load should go down drastically in the first few weeks with the drug killing it - not UP!
Please - talk to the doctor about what was written above, it is really senseless to continue on the present course because it's not working at all. If you do make a change and it STARTS to really work...most doctors would consider letting you go to 24 trying to get to UNDETECTABLE and then after that force you to stop if it was not.
Another option might be stopping completely - and then starting on either a new med or a much higher dosage.
I feel for you - this disease is just not fair.
Can you let us know what you are taking? How much you weight versus how much ribavirin you are taking and which type of interferon you are on?
Not having any hemoglobin or anemia problems doesn't always mean that it's not enough but it COULD mean you are not getting enough OR it's not being absorbed into your bloodstream (you are taking the pills with a meal and hopefull containning a good fat content right? the pills medicine BINDS to the fat so it is not all passed straight through and wasted).
Your viral level is going up drastically while on treatment is what you are saying?
I then agree and believe that some drastic change need be made IMMEDIATELY. If the medication is not working - it's not working. Your viral load should go down drastically in the first few weeks with the drug killing it - not UP!
Please - talk to the doctor about what was written above, it is really senseless to continue on the present course because it's not working at all. If you do make a change and it STARTS to really work...most doctors would consider letting you go to 24 trying to get to UNDETECTABLE and then after that force you to stop if it was not.
Another option might be stopping completely - and then starting on either a new med or a much higher dosage.
I feel for you - this disease is just not fair.
Can you let us know what you are taking? How much you weight versus how much ribavirin you are taking and which type of interferon you are on?
Not having any hemoglobin or anemia problems doesn't always mean that it's not enough but it COULD mean you are not getting enough OR it's not being absorbed into your bloodstream (you are taking the pills with a meal and hopefull containning a good fat content right? the pills medicine BINDS to the fat so it is not all passed straight through and wasted).
Why, what a nice compliment! I appreciate your well thought through posts also. How goes your battle with this stuff? You tend to say very little about yourself, while always asking others how they are doing. How is your treatment response so far? Are you tolerating the meds? What week of treatment are you currently in? I hope you
Hey there, Gary;
First, no docs here; just folks that are dealing with HCV. Sorry to hear about your situation. As you describe it, it sounds like you are a non-responsive, or refractory patient to Pegasys. It sounds like your doctor is up-to-date in regards to frequent PCR testing; is he a gastroenterologist or hepatologist?
Although my knowledge is not based on scientific method, I have some experience with HCV treatment; personal experience as well as anecdotal reports from other patients. Based on this, it appears as though you might discuss the following options with your doctor:
1) Dramatically increase dosage of current Tx meds for the next four weeks in hopes of salvaging the current treatment investment.
2) Change
First, no docs here; just folks that are dealing with HCV. Sorry to hear about your situation. As you describe it, it sounds like you are a non-responsive, or refractory patient to Pegasys. It sounds like your doctor is up-to-date in regards to frequent PCR testing; is he a gastroenterologist or hepatologist?
Although my knowledge is not based on scientific method, I have some experience with HCV treatment; personal experience as well as anecdotal reports from other patients. Based on this, it appears as though you might discuss the following options with your doctor:
1) Dramatically increase dosage of current Tx meds for the next four weeks in hopes of salvaging the current treatment investment.
2) Change
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