Aa
Geno 1b - 8 weeks in, negative at four weeks.
I contracted Hep C back in April 2008. I am a student working on 4 degrees, and I am broke, no insurance, etc.
I found a drug study early this year which I enrolled in which combines Pegasys (180mg/week) and Copegasys (1 gm/day) and is slated to continue until May 15 or 2011.
I called my doctor today to get my viral load from week 4, and he said it was negative.
I've been crying all day, as I feel like after two years of denial and utter fear I have just been released from death row.
My stats before starting treatment:
5'10" 137lb male (very lean)
28 years old - very active
NO ALCOHOL IN YEARS
VL on June 1st: 320,000IU/ml
2 years since Dx; No Hx of treatment
Liver biopsy: Stage 0
This treatment has all but destroyed me. I have stopped running completely; I'm emotionally labile and cry in class; my girlfriend is lost at how to be there for me. I want off ASAP, but with it being free treatment, I want to make sure my odds are awesome before I stop. I go to the office in three days for another checkup and lab. we will see what week 8 and week twelve bring. If I stay negative until Week 24, I'm fairly sure I am going to stop treatment.
I am however, completely, completely open to suggestions;
I just cannot imagine maintaining my life like this for a whole year.
Hoping to maintain my title as the luckiest guy in the world,
James
I found a drug study early this year which I enrolled in which combines Pegasys (180mg/week) and Copegasys (1 gm/day) and is slated to continue until May 15 or 2011.
I called my doctor today to get my viral load from week 4, and he said it was negative.
I've been crying all day, as I feel like after two years of denial and utter fear I have just been released from death row.
My stats before starting treatment:
5'10" 137lb male (very lean)
28 years old - very active
NO ALCOHOL IN YEARS
VL on June 1st: 320,000IU/ml
2 years since Dx; No Hx of treatment
Liver biopsy: Stage 0
This treatment has all but destroyed me. I have stopped running completely; I'm emotionally labile and cry in class; my girlfriend is lost at how to be there for me. I want off ASAP, but with it being free treatment, I want to make sure my odds are awesome before I stop. I go to the office in three days for another checkup and lab. we will see what week 8 and week twelve bring. If I stay negative until Week 24, I'm fairly sure I am going to stop treatment.
I am however, completely, completely open to suggestions;
I just cannot imagine maintaining my life like this for a whole year.
Hoping to maintain my title as the luckiest guy in the world,
James
"I doubt this will be of value to you given your study environment, or will it….? "
I am never closed to others experiences, and I completely welcome your input, regardless of my background. Thank you for taking the time to write me you history. 152 sounds like phenomenal time to stay on Interferon, but perhaps it gets easier as time passes.
I think a lot about statistics, and humans natural tendencies to lie--and aside from blood transfusions, I believe 99.95% of cases come from sharing needles. That said, the population who is most likely to undergo HCV treatment is not the strongest of the bunch. When I read that Suicide Ideation and Severe Drug Relapse were two of the most common symptoms, it naturally raised my eyebrows. Over the 200+ medications I have studied in depth before, I have never seen those two at the top of the list of adverse reactions: scary indeed.
I appreciate your input Bill; stay well.
JMWS
I am never closed to others experiences, and I completely welcome your input, regardless of my background. Thank you for taking the time to write me you history. 152 sounds like phenomenal time to stay on Interferon, but perhaps it gets easier as time passes.
I think a lot about statistics, and humans natural tendencies to lie--and aside from blood transfusions, I believe 99.95% of cases come from sharing needles. That said, the population who is most likely to undergo HCV treatment is not the strongest of the bunch. When I read that Suicide Ideation and Severe Drug Relapse were two of the most common symptoms, it naturally raised my eyebrows. Over the 200+ medications I have studied in depth before, I have never seen those two at the top of the list of adverse reactions: scary indeed.
I appreciate your input Bill; stay well.
JMWS
Diane:
I have done them all in my history (Effexor, Celexa, Wellbutrin, Prozac, and on and on and on). I know more than I should know about medications because of my upbringing in hospitals around doctors and pharmacists, and--wildly-- an EXTREME personal interest. I'm into HARMLESS chemical manipulation for humanitarian furtherance. Trial and error has brought me to a position to stay away from certain medications because, in reality (aside from anesthetics; certain anticonvulsants; a few stimulants, sedatives, and antibiotics; some new antivirals) messing with brain chemistry is frightening; medication altogether, is in its infancy.
Trinity and Trish:
I agree with what you have said more than anything. And though I have had fatigue which turned into lethargy, which turned into apathy, which turned into not exercising, etc--I realize I am beginning to break through this cycle.
I feel better today than I have in over a half a year. I know everything in life affects EVERYONE differently--my communications classes have taught me that more than any pharmaceutical, managed care, or another promises..
I am going in on Friday; I will let everyone know where I stand after that. I am certainly curious as to what they will say.
My most highest regards to all of you,
Keep on keeping on with me; it's such an honor.
JMWS
I have done them all in my history (Effexor, Celexa, Wellbutrin, Prozac, and on and on and on). I know more than I should know about medications because of my upbringing in hospitals around doctors and pharmacists, and--wildly-- an EXTREME personal interest. I'm into HARMLESS chemical manipulation for humanitarian furtherance. Trial and error has brought me to a position to stay away from certain medications because, in reality (aside from anesthetics; certain anticonvulsants; a few stimulants, sedatives, and antibiotics; some new antivirals) messing with brain chemistry is frightening; medication altogether, is in its infancy.
Trinity and Trish:
I agree with what you have said more than anything. And though I have had fatigue which turned into lethargy, which turned into apathy, which turned into not exercising, etc--I realize I am beginning to break through this cycle.
I feel better today than I have in over a half a year. I know everything in life affects EVERYONE differently--my communications classes have taught me that more than any pharmaceutical, managed care, or another promises..
I am going in on Friday; I will let everyone know where I stand after that. I am certainly curious as to what they will say.
My most highest regards to all of you,
Keep on keeping on with me; it's such an honor.
JMWS
Just one quick point. There are SSRIs and SNRIs. I can't take the SSRIs. They make me feel like a zombie, but I do great on the SNRIs. The N is for norepinephrine and it helps me feel more mentally alert and upbeat. The crying you mentioned would be a sign to me that I needed to get my neurotransmitters straightened out... and females tend to cry easily anyhow.
Hang in there. You don't want to have to treat again later because you stopped too soon now.
Diane
Hang in there. You don't want to have to treat again later because you stopped too soon now.
Diane
I was unable to use AD's or sleep medications throughout my treatment. They simply do not work for me and have an almost opposite effect. I have a considerable amount of responsibility at work and at home but managed to get through 72 wks of treatment and I am twice your age. Emotionally, I was a little fragile but was able to keep a handle on it by changing my routine to accommodate my needs at the time. I would not allow myself to go to that dark place and if I felt myself slipping I would shut down for a day or two until I could cope. I don't think I was clinically depressed as much as exhausted. These medications effect everyone differently and I was not effected so much psychologically as physically. Chronic fatigue causes the mind and the body to want to go into melt down mode and that is why I would retreat for several days until I regained a little strength and stability.
I remember several individuals telling me to beware after treatment because I may experience adverse effects from the drugs. That never happened to me, not during or after treatment and I went through having to deal with relapse. We are all effected differently so do what YOU feel is the best for YOU and don't base your decisions on anyone elses experiences.
Anyway, just thought I'd let you know what worked me. I wish you the best moving forward.
Trinity
I remember several individuals telling me to beware after treatment because I may experience adverse effects from the drugs. That never happened to me, not during or after treatment and I went through having to deal with relapse. We are all effected differently so do what YOU feel is the best for YOU and don't base your decisions on anyone elses experiences.
Anyway, just thought I'd let you know what worked me. I wish you the best moving forward.
Trinity
a study drug protease inhibitor and ritonavir. I have a 20% chance of being in the placebo. That ends in three weeks; from there on it is only pegasys and ribavirin
Hi again, James.
I'm in awe of you doing four degrees at once - that alone would be enough to make me cry, having so much responsibility. One of my kids did a double degree and I thought that was biting off a lot. Is there any way you can take a medical leave from some of your studies? I think they were called 'extensions' in my day.
Bill mentioned some key things, which I omitted about shortened treatment. You're stage zero and I think you are not co-infected (or you would have told us?), so I personally would choose 24 weeks, given the RVR and low starting VL. The bugger in this is that you're on a study, as Bill noted, and the study sets the parameters. :(
Can you tell us which study it is? You only mention being on standard of care (Pegasys and Copegus), so what are the other arms testing? And if the study ends in May 2011, that makes about 48 weeks, if your'e now on week eight. So are the other arms doing shorter treatment times?
Glad you shared this with us, talk to you later and hang in there... please.
Susan
I'm in awe of you doing four degrees at once - that alone would be enough to make me cry, having so much responsibility. One of my kids did a double degree and I thought that was biting off a lot. Is there any way you can take a medical leave from some of your studies? I think they were called 'extensions' in my day.
Bill mentioned some key things, which I omitted about shortened treatment. You're stage zero and I think you are not co-infected (or you would have told us?), so I personally would choose 24 weeks, given the RVR and low starting VL. The bugger in this is that you're on a study, as Bill noted, and the study sets the parameters. :(
Can you tell us which study it is? You only mention being on standard of care (Pegasys and Copegus), so what are the other arms testing? And if the study ends in May 2011, that makes about 48 weeks, if your'e now on week eight. So are the other arms doing shorter treatment times?
Glad you shared this with us, talk to you later and hang in there... please.
Susan
I've been a runner since 1980 only stopped when advanced pregnancy. I ran everyday while on tx for 13 weeks, in Phoeinx, in summer. I was painfully slow, and it was very very hard. But I had to do it. I was depressed. How could I not be feeling so badly? Antidepressants are helpful for some. I'm like you, I didn't want another chemical in my body. I have tried antidepressants in past and they took me straight to bed with fatigue so didn't go there.
When I started tx my doc told me if I was undect at 4 wks "some studies support a 24 week course." As noted by Susan. Take it to 24 and decide then with more information. Use the archive on this site for any topic, it will be there. I think the first 5-6 wks are hardest as your body and life adjust.
Judy
When I started tx my doc told me if I was undect at 4 wks "some studies support a 24 week course." As noted by Susan. Take it to 24 and decide then with more information. Use the archive on this site for any topic, it will be there. I think the first 5-6 wks are hardest as your body and life adjust.
Judy
Hey there,
It’s not so much what has helped me, but what has been documented in published, peer reviewed journals; that antidepressants, and particularly SSRI’s are efficacious for alleviating interferon-induced emotional lability and depression.
From an anecdotal standpoint, I was prescribed Lexapro for all of the 152 weeks of therapy; and suffered very few emotional issues during that time, despite a rather long history of depression and GAD.
My old GI doc *insisted* his IFN patients use an AD prophylaxis; he had two patients commit suicide on this cr@p.
There are also other issues that might require pharmaceutical intervention; for instance if you’re now anemic from the ribavirin, you might benefit from epoetin to increase your hemoglobin… the list is long.
As others have mentioned, if you were currently treating in the E.U. you would only require 24 weeks of therapy, given your excellent response profile. Assuming no HIV coinfection, no cirrhosis, etc, you’d be done shortly with treatment :o). I doubt this will be of value to you given your study environment, or will it….?
Good luck, and hang in there, guy—
--Bill
It’s not so much what has helped me, but what has been documented in published, peer reviewed journals; that antidepressants, and particularly SSRI’s are efficacious for alleviating interferon-induced emotional lability and depression.
From an anecdotal standpoint, I was prescribed Lexapro for all of the 152 weeks of therapy; and suffered very few emotional issues during that time, despite a rather long history of depression and GAD.
My old GI doc *insisted* his IFN patients use an AD prophylaxis; he had two patients commit suicide on this cr@p.
There are also other issues that might require pharmaceutical intervention; for instance if you’re now anemic from the ribavirin, you might benefit from epoetin to increase your hemoglobin… the list is long.
As others have mentioned, if you were currently treating in the E.U. you would only require 24 weeks of therapy, given your excellent response profile. Assuming no HIV coinfection, no cirrhosis, etc, you’d be done shortly with treatment :o). I doubt this will be of value to you given your study environment, or will it….?
Good luck, and hang in there, guy—
--Bill
am just here for a second but saw this awesome treatment response of yours..maybe someone else can say more about two factors:
1) starting load less than 400, 000, that is LOW
2) RVR, that is clear by four weeks
In Europe (maybe just Scandinavia, not sure), the new protocol when the patient meets these two criteria is to do only 24 weels of treatment.
Not everyone in North America would do that but that's what I would do.
Will talk to you later but maybe others can address this.
And Trish's advice to "Don't even decide now if you're going to stop at Week 24. Just take it a chunk at a time and do what you need to do for the now and just keep on going," is right on.
Susan
1) starting load less than 400, 000, that is LOW
2) RVR, that is clear by four weeks
In Europe (maybe just Scandinavia, not sure), the new protocol when the patient meets these two criteria is to do only 24 weels of treatment.
Not everyone in North America would do that but that's what I would do.
Will talk to you later but maybe others can address this.
And Trish's advice to "Don't even decide now if you're going to stop at Week 24. Just take it a chunk at a time and do what you need to do for the now and just keep on going," is right on.
Susan
Wow, I did not expect such an immediate response from people; I certainly appreciate everything that has been said.
I was well aware of everything going into treatment. Years back I was headed towards medicine/chemical engineering/pharmacology, so I have read as much as I could over the past few years when I haven't been busy with essays, classes and such.
The depression/anxiety it beginning to subside; I have many MD and Nurse Prac. friends who would write me whatever is needed at any time; for the moment I am trying to avoid anything that is going to mess with my brain chemistry more than it has been already. I am not obstinate however.
I am about to start exercising again--slowly at first, and try to make my way up to what I was doing before treatment began (30-70 miles/week) thought in the Austin summer on Pegasys, that seems more like fantasy than reality. It's been hard to accept that I am not the pillar this time--that I have to lean on others this year. I could write a book of poetry on the psychology of role reversal. It's been both painful, yet also enlightening. It will fit soooooooooo well with my studies.
Re: Bill--I am not sure which pharmaceuticals you specifically refer to, but I am curious to know which have helped you. I have a low-tolerance for SSRI's, cannot take MAOI's, and am frightened at having a script for a benzo lying around.
I am reading numbers from all over that contradict each other constantly, but I know that I fit the physiological profile of someone who has a high chance of SVR considering my Dx, Tx, and Hx.
I don't know what to say.... Thank you everyone. Looks like I found yet another family. It seems to happen everywhere I go.
I will keep everyone posted---
.jmws..
I was well aware of everything going into treatment. Years back I was headed towards medicine/chemical engineering/pharmacology, so I have read as much as I could over the past few years when I haven't been busy with essays, classes and such.
The depression/anxiety it beginning to subside; I have many MD and Nurse Prac. friends who would write me whatever is needed at any time; for the moment I am trying to avoid anything that is going to mess with my brain chemistry more than it has been already. I am not obstinate however.
I am about to start exercising again--slowly at first, and try to make my way up to what I was doing before treatment began (30-70 miles/week) thought in the Austin summer on Pegasys, that seems more like fantasy than reality. It's been hard to accept that I am not the pillar this time--that I have to lean on others this year. I could write a book of poetry on the psychology of role reversal. It's been both painful, yet also enlightening. It will fit soooooooooo well with my studies.
Re: Bill--I am not sure which pharmaceuticals you specifically refer to, but I am curious to know which have helped you. I have a low-tolerance for SSRI's, cannot take MAOI's, and am frightened at having a script for a benzo lying around.
I am reading numbers from all over that contradict each other constantly, but I know that I fit the physiological profile of someone who has a high chance of SVR considering my Dx, Tx, and Hx.
I don't know what to say.... Thank you everyone. Looks like I found yet another family. It seems to happen everywhere I go.
I will keep everyone posted---
.jmws..
I don’t know if it was mentioned above, but this sounds like a classic case for antidepressants; please discuss this with the study team at your next possible convenience. They might be the difference between completing this therapy and discontinuing.
There are many side effects associated with IFN therapy; and many of them can be effectively managed with yes, more pharmaceuticals.
Most of us can feel your pain, guy; but as mentioned above, this crap works sometimes, and it beats the alternative.
All the best to you, and welcome to the discussion group—
--Bill
There are many side effects associated with IFN therapy; and many of them can be effectively managed with yes, more pharmaceuticals.
Most of us can feel your pain, guy; but as mentioned above, this crap works sometimes, and it beats the alternative.
All the best to you, and welcome to the discussion group—
--Bill
don't quit! when you look back and no you got rid of the virus you will be glad you kept going. Don't think that because you are negative it will stay that way. You need to complete treatment to give yourself the best chance. If you quit, there is no guarantee that the next time you will get to undetectable so easily.
Good luck - Dave
Good luck - Dave
Oh...doh...you said Geno 1b ... then AWESOME!!! You just leapt from just under 50% chance of cure to that 85% or more chance of cure with a 4 week UND, statistically. Hang in there!!
Trish
Trish
With undect at 4 wks a 24 wk course of treatment is possible. Hang in there, you're very lucky to respond so quickly. I know it's tough, I'm a lot older than you and toughed out 13 weeks, was still detec at 12 wk viral load so I stopped. This site is very helpful. The time will pass and you will get through this. One day at a time.
Judy
Judy
You ARE one of the luckiest guys in the world to be on a drug trial and be clear at 4 weeks. Regardless of which Genotype you are (you don't say which) that's the golden ticket we all hope for on treatment. That just increased your odds of clearing Hep C considerably to the upper 80% and into 90%. GREAT reasons to hang in there and keep on going.
The best way your girlfriend can be there for you is to understand that the drugs can chemically alter your brain chemistry and that the person you are on treatment is a chemically altered you and try not to feel rejected if you just need to hibernate sometimes or if you really lack energy and aren't very social for the duration while you're on treatment. She can get out and do things with others and you can encourage her to and give her a break from times when you really need to be away from other people and it will happen alot. All you can do is take it a day at a time and deal with the side effects each day. You'll have to ride the rollercoaster like everyone else.
I have to say, you've taken on quite a heavy load for a person on treatment and Stage 0. Did you get any information on what side effects you could expect and what this would do to you? The most common side effect is fatigue and it's a long haul. I worked all through treatment but I had to use my evenings and weekends as required to rest up so that I had energy for the most important things. I did one evening course a week with a decent amount of homework and worked full-time and did some extra activities as able as well. Just the same...I usually had one day on the weekend where I was in bed for a good part of the day and there were certain periods of treatment in the earlier weeks and months where I was in bed by 7pm or 8pm which drove me nuts that I was going to bed when it was still bright out but I was frigging exhausted. That improved and changed and other things came along. Weeks went by and I got closer to the end than I was to the beginning and then made it through. Don't even decide now if you're going to stop at Week 24. Just take it a chunk at a time and do what you need to do for the now and just keep on going.
I hope that helps and big congratulations on a 4 week UND - RVR.
Trish
The best way your girlfriend can be there for you is to understand that the drugs can chemically alter your brain chemistry and that the person you are on treatment is a chemically altered you and try not to feel rejected if you just need to hibernate sometimes or if you really lack energy and aren't very social for the duration while you're on treatment. She can get out and do things with others and you can encourage her to and give her a break from times when you really need to be away from other people and it will happen alot. All you can do is take it a day at a time and deal with the side effects each day. You'll have to ride the rollercoaster like everyone else.
I have to say, you've taken on quite a heavy load for a person on treatment and Stage 0. Did you get any information on what side effects you could expect and what this would do to you? The most common side effect is fatigue and it's a long haul. I worked all through treatment but I had to use my evenings and weekends as required to rest up so that I had energy for the most important things. I did one evening course a week with a decent amount of homework and worked full-time and did some extra activities as able as well. Just the same...I usually had one day on the weekend where I was in bed for a good part of the day and there were certain periods of treatment in the earlier weeks and months where I was in bed by 7pm or 8pm which drove me nuts that I was going to bed when it was still bright out but I was frigging exhausted. That improved and changed and other things came along. Weeks went by and I got closer to the end than I was to the beginning and then made it through. Don't even decide now if you're going to stop at Week 24. Just take it a chunk at a time and do what you need to do for the now and just keep on going.
I hope that helps and big congratulations on a 4 week UND - RVR.
Trish
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When I went hyper-thyroid and was sleeping only a couple hours a night, it threw my whole system off and then I took a mild bi-polar med that allowed me to sleep and took the edge off of the feeling like I was always ready to zoom into my day like a jetplane. It was so slight that the pharmacist even mentioned at the time "this must be to help you sleep". When my thyroid flipped to hypo, I was done with them. I did go on AD's after treatment ended as that is when I slipped into depression. I was on them for four months, struggled mightily during that time and would have struggled worse without them. I then improved enough to take myself off of them all at one shot - not something I'd recommend to others but inside myself, I knew it was right for me. I told my doctor after I'd navigated that part successfully. By then he knew me well enough to not bother chiding me.
This will be a very selfish time in your life - by that, I mean it's all about getting through it and you'll find that getting through treatment takes the dedication that your physical pursuits require. While you'll have time for others, your priority during this time will be to both get through treatment and make sure that your most important things get done, whatever they happen to be. If you have energy for other things, great. Focus on quality of life rather than quantity and good luck with continuing to navigate. An RVR is a lovely way to proceed through treatment.
Trish