Aa
If you have strept throat and Dr prescribes meds...
Say you have strept throat. And Dr prescibes Penicillin (or whatever) for 10 days and told you not to stop until you have taken all the medication. So why in the world would you stop taking treament for Hep C because of sx unless your DR told you otherwise. Just because you were UND during a certain period and stopped tx doesn't mean it can't come back. Maybe I am really confused here but I just don't get it. Why in the world would you stop? I know tx is ridiculous and tough but why would you stop now?
Although many are much more fortunate, some experience side effects that are either dangerous or create extreme distress and discomfort. Issues like major rash covering 80% of your body, retinal damage, severe depression, autoimmune reactions, heart conditions, etc. are just a few. I'm sure there's plenty more, but many don't want to stop, but they just can't continue. I truely sympathize with them. Some go into trt with other issues that make trt even more challenging.
I know for myself tx is becoming more and more of a need. Then I see some that are stopping tx due to sx. Shouldn't we push more to rid ourselves of this disease? That is all I am trying to say here. Push even more to rid ourselves of this ugly virus?
Because the side effects make you crazy and you hate it and want to stop.
Your body fights your mind. Your body says " stop poisoning me" your mind plays the parent saying, " but it's for your own good."
And this doesn't even approach the physical side effects.
You know tx is ridiculously tough? I thought you haven't ever done it.
Honey, nobody, nobody who hasn't done interferon can really understand.
Maybe our spouses or other caretakers come close.
I consider myself to be an aware basically upbeat person. Side effects this time have been fairly easy. I don't want to do that shot tonight. Do you know how tired I am of fighting, and I don't mean fighting to stay alive.
I mean fighting to stay relaxed, fighting to stay positive, fighting the side effects of this pain in the a$$ tx.
Comparing antibiotics to interferon, is like comparing the difference in finding a mouse in your house or finding a bear.
Your body fights your mind. Your body says " stop poisoning me" your mind plays the parent saying, " but it's for your own good."
And this doesn't even approach the physical side effects.
You know tx is ridiculously tough? I thought you haven't ever done it.
Honey, nobody, nobody who hasn't done interferon can really understand.
Maybe our spouses or other caretakers come close.
I consider myself to be an aware basically upbeat person. Side effects this time have been fairly easy. I don't want to do that shot tonight. Do you know how tired I am of fighting, and I don't mean fighting to stay alive.
I mean fighting to stay relaxed, fighting to stay positive, fighting the side effects of this pain in the a$$ tx.
Comparing antibiotics to interferon, is like comparing the difference in finding a mouse in your house or finding a bear.
You're preaching to the choir for me (and probably most here), but do realize that there are game changers that can sneak up and change your plans. Trt and all the sides are very unpredictable. I haven't seen too many that have had to stop trt, and most experience major frustration and concern what stopping or cutting things short.
I never said I started tx. I was only making an anology with tx and Penicillian. That is all. DIdn't mean to offend you but I am really concerned about all of these people stopping tx early...not filing out their original schedule is all I am saying.
Believe me I know about Hep C, Hemochromatosis, and PCT. I am basically F%^&*^& because I can't even start tx because of other issues. So don't go there with me.
My originial question was "why are people stopping tx early when they shouldn't"
Believe me I know about Hep C, Hemochromatosis, and PCT. I am basically F%^&*^& because I can't even start tx because of other issues. So don't go there with me.
My originial question was "why are people stopping tx early when they shouldn't"
I think you need to re-read your own post.
I'm not trying to make you angry. But I understand why people stop early. I don't condone it, but I understand. And my hepatologist has told me about pulling people off tx. This is why it's important we tell them all our side effects.
Perhaps you didn't think things out when you compared something like antibiotics to tx. No comparison, believe me.
And if anyone knows about needing to get rid of this virus, you must realize, I've already lost a liver to it. I was 6 weeks from death according to my surgeon and I don't play the 'my pain is worse than you pain' game.
This is my journey through life.
Chill out and so will I.
I'm going off line, heading to the kitchen for nourishment, and in a couple hours take shot 23 of 24.
I'm not trying to make you angry. But I understand why people stop early. I don't condone it, but I understand. And my hepatologist has told me about pulling people off tx. This is why it's important we tell them all our side effects.
Perhaps you didn't think things out when you compared something like antibiotics to tx. No comparison, believe me.
And if anyone knows about needing to get rid of this virus, you must realize, I've already lost a liver to it. I was 6 weeks from death according to my surgeon and I don't play the 'my pain is worse than you pain' game.
This is my journey through life.
Chill out and so will I.
I'm going off line, heading to the kitchen for nourishment, and in a couple hours take shot 23 of 24.
If and when you begin trt you will have a very different perspective and will likely be able to answer your own question.
All I am saying is if you were taking Penicillian and Dr told you to take for 10 days 3X a day why wouldn't you? And people are stopping tx for sx and not their DR orders? That is what boggles my mind. And how many will eventually relapse? Sad but true!
The effects of 'cillin type drugs on bacterial infections and the likelihood of creating reistant bacterial strains if you don't do the full course have long years of documentation. IFN and HCV are still in the labratting phase by comparison. People who are fully compliant don't clear and others who quit early (sometimes) SVR. Until we understand better how IFN works and what part a person's own genetic makeup effects the tx, we're still dealing with probabilities and %s.
Thank You! I was just trying to make a comparison with meds prescribed by a physician. That was all. People are never compliant which we have seen from several posters recently. That was all I was trying to say.
It is really a rhetorical question. What they have described has made me certain I would not have completed the treatment had I been on interferon.
There are times when a person MUST stop. When the TX is killing the host along with the virus. There is also severe depression. I know of two people who did interferon TX for Hep. C in the past 8 years who committed suicide.
It is sad when people stop, but what we (especially those of us who haven't been through that particular horror of this disease) can do is what folks here are doing; support those still with the program, educate ourselves and be compassionate to all, whatever their decisions are.
There are times when a person MUST stop. When the TX is killing the host along with the virus. There is also severe depression. I know of two people who did interferon TX for Hep. C in the past 8 years who committed suicide.
It is sad when people stop, but what we (especially those of us who haven't been through that particular horror of this disease) can do is what folks here are doing; support those still with the program, educate ourselves and be compassionate to all, whatever their decisions are.
I don't think I have read many posts that said people,were stopping treatment when they should not. There are a couple who stopped early, but I think most of the (few) posts from people thinking about stopping early are from people who are sort of looking for "permission" from the rest of us that it is okay to stop early and it won't make any difference.
Let's face it, we would all like to stop treatment. A few people see that they are so close to being UND at 4 weeks (or 8 weeks for Vic) that they want to ask what the rest of us think about about doing the 24 weeks (28 for Vic) instead of the 48. Of course, most of us post and urge the person to continue treatment if at all possible. Sometimes when things are crappy, people need a little boost to keep on with treatment.
The other people who have stopped early have been those that had severe side effects (major potentially life-threatening rashes, retina problems, cotton wool spots, vasculits, allergic reactions, etc. Even those people have not been too many, but those people have to stop.
I actually see many more people posting for advice for their side effects and then aggressively treating those side effects so they can stay on treatment. I admire the people who are taking Procrit and Neupogen and dealing with very low blood counts and the symptoms that go with them. I sometimes wonder if I could do it, but I know if I was in that situation I would really try very hard to stay on treatment too.
I think we had a couple of posts very recently about people stopping early when they would be better advised not to stop, and that brings it to the forefront of people's minds.
It is a good thing we have each other to help us get through all of this. We have to keep our eyes on the prize.
Let's face it, we would all like to stop treatment. A few people see that they are so close to being UND at 4 weeks (or 8 weeks for Vic) that they want to ask what the rest of us think about about doing the 24 weeks (28 for Vic) instead of the 48. Of course, most of us post and urge the person to continue treatment if at all possible. Sometimes when things are crappy, people need a little boost to keep on with treatment.
The other people who have stopped early have been those that had severe side effects (major potentially life-threatening rashes, retina problems, cotton wool spots, vasculits, allergic reactions, etc. Even those people have not been too many, but those people have to stop.
I actually see many more people posting for advice for their side effects and then aggressively treating those side effects so they can stay on treatment. I admire the people who are taking Procrit and Neupogen and dealing with very low blood counts and the symptoms that go with them. I sometimes wonder if I could do it, but I know if I was in that situation I would really try very hard to stay on treatment too.
I think we had a couple of posts very recently about people stopping early when they would be better advised not to stop, and that brings it to the forefront of people's minds.
It is a good thing we have each other to help us get through all of this. We have to keep our eyes on the prize.
"It is a good thing we have each other to help us get through all of this. We have to keep our eyes on the prize."
Well said pooh.
Well said pooh.
All I am doing is asking people's thoughts about stopping tx early. That was my main question. They get the ok and then they are done. I am just worried they are stopping too early. We have all seen the trial numbers and they don't look promising on 24 wks is all I am saying. Just like taking Penicillian....why would you not take the entire bottle of 30 pills for 10 days. Had no idea this would be an uproar.
Rivil...don't go there with me and suicide. Been there and done that, and hated that. Not related to Hep C but suicide enough.
Just my thoughts for tonight and I am sure more to come
Jules
Rivil...don't go there with me and suicide. Been there and done that, and hated that. Not related to Hep C but suicide enough.
Just my thoughts for tonight and I am sure more to come
Jules
Had no idea this would be an uproar.
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You are asking people for input to your question and they are giving their honest responses from their own perspective. I see people reaching out to help you understand. No need to turn this into anything else.
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You are asking people for input to your question and they are giving their honest responses from their own perspective. I see people reaching out to help you understand. No need to turn this into anything else.
I am not turning this into anything else. Was just asking a question compared to an analogy.
"People are never compliant which we have seen from several posters recently. "
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I don't really agree with that statement.
A few people have forgotten to take a med dose or were not instructed properly. But those are few. From what I have read on this forum most people are doing everything they can and practically standing on their heads to be compliant. It is not easy, not just because one does not feel well, but also the dosing schedule is complicated and it seems one is taking meds, eating, drinking water, or peeing every time one turns around. I had major sleep deprivation when I was on the three drugs because I could never get a decent stretch of sleep. (Eating 5:30 , pills 6, back to bed, up for awhile, eating 1:30, pills 2, eating 5:30, pills 6, eating 9:30, pills 10. Drink a gallon of water and spend your free time (when you are not taking pills) on the toilet peeing (or worse. Bed at 10:30 only to start the ritual all over at 5:30 am). In addition, after drinking a gallon of water all day you really are not going to get a lot of uninterrupted sleep. I was up almost every 30-45 minutes all night peeing. I was exhausted. Plus one is thirsty all the time so after getting up at night to pee I had to quench my parched throat and mouth which added to the frequent need to get up. That is just the Hep C meds. Then one has all the side effect meds and ointments and lotions and butt creams and suppositories and eye drops not to mention the misery from those side effect.
I am a pretty strong willed and determined person and I really want to get rid of this virus, but even I sometimes feel like I am not sure how I will continue for a total of 48 weeks. I have to poke myself and remember the prize. I definitely will finish treatment, but that does not keep me from sometimes feeling I just cannot do this any more. And no one except the people on this forum understand. Thank God for thios forum and the people on it.
Anyway, just my thoughts.
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I don't really agree with that statement.
A few people have forgotten to take a med dose or were not instructed properly. But those are few. From what I have read on this forum most people are doing everything they can and practically standing on their heads to be compliant. It is not easy, not just because one does not feel well, but also the dosing schedule is complicated and it seems one is taking meds, eating, drinking water, or peeing every time one turns around. I had major sleep deprivation when I was on the three drugs because I could never get a decent stretch of sleep. (Eating 5:30 , pills 6, back to bed, up for awhile, eating 1:30, pills 2, eating 5:30, pills 6, eating 9:30, pills 10. Drink a gallon of water and spend your free time (when you are not taking pills) on the toilet peeing (or worse. Bed at 10:30 only to start the ritual all over at 5:30 am). In addition, after drinking a gallon of water all day you really are not going to get a lot of uninterrupted sleep. I was up almost every 30-45 minutes all night peeing. I was exhausted. Plus one is thirsty all the time so after getting up at night to pee I had to quench my parched throat and mouth which added to the frequent need to get up. That is just the Hep C meds. Then one has all the side effect meds and ointments and lotions and butt creams and suppositories and eye drops not to mention the misery from those side effect.
I am a pretty strong willed and determined person and I really want to get rid of this virus, but even I sometimes feel like I am not sure how I will continue for a total of 48 weeks. I have to poke myself and remember the prize. I definitely will finish treatment, but that does not keep me from sometimes feeling I just cannot do this any more. And no one except the people on this forum understand. Thank God for thios forum and the people on it.
Anyway, just my thoughts.
Pooh...I never said otherwise. I wish you the utmost best but there are others who are not continuing tx. Those are the one I wish to address. They are not finishing their prescribed meds............plain and simple. That was my point
" Why in the world would you stop? I know tx is ridiculous and tough but why would you stop now? "
A few of us said why some would stop...not to approve or disapprove.
Just giving our thoughts and opinions, however there is no one acceptable answer to your question.
A few of us said why some would stop...not to approve or disapprove.
Just giving our thoughts and opinions, however there is no one acceptable answer to your question.
I am not here judging. I am just on here asking why and why not contiung tx....that is all. Which is what my question was" Why would you stop tx during tx just because you were UND"?
Really? you think? I doubt it that is why people don't get the answers they are looking for. Maybe you should read more
Jules, I understand what you are saying. Personally, unless someone has some major side effect that bumps them off treatment, I also think it is very unwise to stop treatment early. Take me for example. I was <43 but dteected at 4 weeks. I never gave it a second thought. I knew I was stuck with 48 weeks. I am not the type of person to bet on beating the odds, especially when the odds are stacked against one, not with this virus anyway.
But we are all different. We don't really know what another is going through. We can encourage them to continue on, but in the end it is their decision based on their circumstances.
But we are all different. We don't really know what another is going through. We can encourage them to continue on, but in the end it is their decision based on their circumstances.
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