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Treat or Not Treat...My perspective
We are all individuals. While there are predicators as to whether someone has a better chance than others to reach SVR, it is the individual who will respond one way or the other. These are only predicators not absolutes. This goes for obesity, platelets and many other aspects of treatment and/or side effects and ability to work. That is why doctors “practice” medicine.
I’m not going to give any medical advice or study information. These are my observations and response to txt as I see them and as how they relate to me alone.
I was diagnosed last summer with Hep C, 1.a. I started Pegasys and Ribavirin in November of 2008. I take 3 riba in the morning and 3 in the evening. 1200 mg. I have two shots left after today so I’m 45/48. I started txt weighing over 260 lbs and am currently around 210. My viral load was over 11,000,000 which is pretty high. My platelets were 44 when I started because I have ITP which is a platelet disorder. They are currently 172 which is extremely unusual to have them increase on txt instead of decreasing. No-one can tell me why. I was UND at 12 weeks and am 100% compliant except for two times I took double the riba by mistake.
First thing, for all of you out there trying to make up their minds as to whether to treat or not. This is a difficult decision and mine wasn’t easy either. I chose to treat now instead of waiting for new drugs. I have a firm support system in place and a good job. I’m aware that new drugs are coming out that make the odds better in getting SVR, but these drugs are in addition to and not in replacement of current txt (as far as I know).
I have a 40 hour work week in a stressful environment. I commute so you can add 2 hours per day on to that. I have only missed one day of work in the almost year that I have been on txt. I did have to take a week off before txt to get my platelets up before starting.
My side effects have included weight loss (I needed it), loss of hair, headache, weakness, lethargy, anger/rage, brain fog, earing loss, loss of appetite, insomnia, loose stools and constipation (from headache medicine). While all of these sides were uncomfortable, they were doable. Some sides have been constant through txt and some have come and then disappeared.
If I can help anyone, I’d be happy to.
I’m not going to give any medical advice or study information. These are my observations and response to txt as I see them and as how they relate to me alone.
I was diagnosed last summer with Hep C, 1.a. I started Pegasys and Ribavirin in November of 2008. I take 3 riba in the morning and 3 in the evening. 1200 mg. I have two shots left after today so I’m 45/48. I started txt weighing over 260 lbs and am currently around 210. My viral load was over 11,000,000 which is pretty high. My platelets were 44 when I started because I have ITP which is a platelet disorder. They are currently 172 which is extremely unusual to have them increase on txt instead of decreasing. No-one can tell me why. I was UND at 12 weeks and am 100% compliant except for two times I took double the riba by mistake.
First thing, for all of you out there trying to make up their minds as to whether to treat or not. This is a difficult decision and mine wasn’t easy either. I chose to treat now instead of waiting for new drugs. I have a firm support system in place and a good job. I’m aware that new drugs are coming out that make the odds better in getting SVR, but these drugs are in addition to and not in replacement of current txt (as far as I know).
I have a 40 hour work week in a stressful environment. I commute so you can add 2 hours per day on to that. I have only missed one day of work in the almost year that I have been on txt. I did have to take a week off before txt to get my platelets up before starting.
My side effects have included weight loss (I needed it), loss of hair, headache, weakness, lethargy, anger/rage, brain fog, earing loss, loss of appetite, insomnia, loose stools and constipation (from headache medicine). While all of these sides were uncomfortable, they were doable. Some sides have been constant through txt and some have come and then disappeared.
If I can help anyone, I’d be happy to.
You are right, perhaps I am a tad more than a little bit on the defensive which translates into being grumpy. I guess I kinda worked myself into a defensive mode because of various reasons and my expectations of being attacked. I apologize for being so defensive and argumentative. I only wanted to put my story out there and offer help to others who may need it. Who may have similar circumstances.
I wish you success and all the best.
I wish you success and all the best.
This thread has gone off the rails-you do seem a bit grumpy Kathy if you don't mind me saying so.
I am mystified as to how your consultant arrives at an 80% success prediction.
Geno 1 patients who are UND at 12 weeks have a 66% chance of SVR.
Those with undectable viral serum at four weeks have an 80% shot but you do not claim to be in that category.
The Hep C treatment game is not over until SVR 24.
I wish you success.
I am mystified as to how your consultant arrives at an 80% success prediction.
Geno 1 patients who are UND at 12 weeks have a 66% chance of SVR.
Those with undectable viral serum at four weeks have an 80% shot but you do not claim to be in that category.
The Hep C treatment game is not over until SVR 24.
I wish you success.
A geno1 without the issue of obesity has roughly at best a 50%-50% chance. That is one of the most documented aspects of treatment that you can find on the internet.
I don't believe they even have the statistics out yet on what the actuals are for telepravir or boce either yet althought I would expect that those who are able to finish the course of treatment might be up that high. Just my guess seeing how well people like Andiamo did when they received the full regimen of the drugs. So perhaps you are on a trial med and I didn't know that - in that case I apologize because I would believe in that case it could be that high as long as you were able to complete the course.
With regular combo treatment though a geno 2 could expect almost 80% chance at SVR but a geno 1 with complicating issues, no.
Although I am a firm believer that when doctors personalize care and tweak up the meds and believe in extension it gives you much better odds - they still just aren't that high with just plain old combo meds. But - if I had a 50/50 chance to win the lotto I'd certainly go for those odds!
I don't believe they even have the statistics out yet on what the actuals are for telepravir or boce either yet althought I would expect that those who are able to finish the course of treatment might be up that high. Just my guess seeing how well people like Andiamo did when they received the full regimen of the drugs. So perhaps you are on a trial med and I didn't know that - in that case I apologize because I would believe in that case it could be that high as long as you were able to complete the course.
With regular combo treatment though a geno 2 could expect almost 80% chance at SVR but a geno 1 with complicating issues, no.
Although I am a firm believer that when doctors personalize care and tweak up the meds and believe in extension it gives you much better odds - they still just aren't that high with just plain old combo meds. But - if I had a 50/50 chance to win the lotto I'd certainly go for those odds!
I'm sorry you feel that I am so negative. I posted this because I want to give another perspective to individuals who are considering treatment and to offer my limited knowledge and support. My doctor said that I had a 80%+ chance of SVR. I don't want to give anyone a false outlook or a rosy outlook, but there is no reason to be overly negative also. I do not see how I insulted one of the most respected members of this forum. I only defended myself and my perspective. I'm not trying to be confusing or obtuse. I am simply stating my situation, my treatment and my diagnosis. I do not think I am being judgmental, insulting or out of line.
Since my hepatologist, who is the head of the liver department at UCONN Medical Center, stated that I have a 80%+ chance of SVR and I was obese kinda blows your judgmental response too doesn't it?"
No geno 1A has an 80% chance at SVR odds - especially when coupled with obesity just don't make any sense in this universe. It is nice to be optimistic but we don't want to give anyone else a false outlook on their chances and prognosis and sometimes people are desperate to find a silver lining and will take that and run to the bank. But it's just not true. I WISH geno1s had an 80% shot but even before you add in the other issues it's just not realistic or true.
Michael was being nice and speaking to you in clearly non-judgemental tones..........I don't know why you would choose to insult one of the most respected members that has ever posted on this forum by insinuating negativity when he was only trying to be objective and talk with you.
If you didin't want any responses why did you post in the first place? That is very confusing to most of us.
No geno 1A has an 80% chance at SVR odds - especially when coupled with obesity just don't make any sense in this universe. It is nice to be optimistic but we don't want to give anyone else a false outlook on their chances and prognosis and sometimes people are desperate to find a silver lining and will take that and run to the bank. But it's just not true. I WISH geno1s had an 80% shot but even before you add in the other issues it's just not realistic or true.
Michael was being nice and speaking to you in clearly non-judgemental tones..........I don't know why you would choose to insult one of the most respected members that has ever posted on this forum by insinuating negativity when he was only trying to be objective and talk with you.
If you didin't want any responses why did you post in the first place? That is very confusing to most of us.
I don't see that Mike was disagreeing with your perspective. As you pointed out that it "relates to me alone" Mike acknowledged that your situation did not apply to all, validating your uniqueness. And as you clearly stated "these are predictors not absolutes" and Mike used the term "suggests". There are several other established 'negative predictors' that may, or may not, apply to individuals. I don't read where Mike was assailing your point of view at all or that any concept or judgement was blown. Good luck in the rest of your treatment.
Well I don't really know what my platelet count then and now really mean because an ITP diagnosis is by exclusion. There isn't any definitive test, so I may never have even had it. Perhaps it was brought on by other variables, maybe even something related to HCV. The doctors (two hepatologists and one hematologist) dont' know so how could I or you know. But here I am Mike, UND at 12, obese, beginning low platelet count and on my way to SVR. Perhaps you might want to re-read my statement about predicators, individuality and the "practice" of medicine.
No, it doesn't blow my concept because I didn't think you were cirrhotic.
That is precisely what I was saying - that your platelet count doesn't mean what it does for most HCV patients.
The typical HCV patient with a platelet count of 44,000 is cirrhotic. But your low count was attributable to ITP and I stated clearly that I did not know how ITP impacts treatment.
I really didn't have a concept - I tried to demonstrate citing your case as an example of a patient overcoming negative predictors is questionable because you are not the typical case. ITP isn't a common disease.
You should re-read my post. It wasn't intended to be harsh. I tried to distinguish your case and specifically your platelet count from an average patient because in an HCV setting a platelet count of 44,000 does suggest cirrhosis. Cirrhosis and obesity are negative predictors what when coupled together are very difficult to overcome.
Mike
That is precisely what I was saying - that your platelet count doesn't mean what it does for most HCV patients.
The typical HCV patient with a platelet count of 44,000 is cirrhotic. But your low count was attributable to ITP and I stated clearly that I did not know how ITP impacts treatment.
I really didn't have a concept - I tried to demonstrate citing your case as an example of a patient overcoming negative predictors is questionable because you are not the typical case. ITP isn't a common disease.
You should re-read my post. It wasn't intended to be harsh. I tried to distinguish your case and specifically your platelet count from an average patient because in an HCV setting a platelet count of 44,000 does suggest cirrhosis. Cirrhosis and obesity are negative predictors what when coupled together are very difficult to overcome.
Mike
This is the type of response I was expecting. That is why I used the terms "extremely unusual" and "relates to me alone". I am not trying to mislead or misrepresent myself or my sides. I did get my count up so I could get the liver biopsy by having gamma globulin infusions for an entire 5 days at over 6 hours per day. Since I was stage 2 and do not show cirrhosis kinda blows your concept doesn't it? Since my hepatologist, who is the head of the liver department at UCONN Medical Center, stated that I have a 80%+ chance of SVR and I was obese kinda blows your judgmental response too doesn't it? You don't leave a whole lot of room for individual response or variables in your judgment.
Kathy
Kathy
I doubt seriously that your platelet situation is applicable to the overwhelming majority of the members here. In an HCV setting a platelet count of 44,000 is suggestive of cirrhosis. The fact that your low count was due to ITP is different, though I don't profess to know how it impacts treatment. I think it is misleading to imply that the fact that you may have treated with a low platelet count - or got your count up to treat - overshadows the truth that a platelet count that low suggests a considerable amount of liver damage which does negatively impact treatment odds.
By the way, what did you do to get you platelet count up?
You couple cirrhosis with obesity and treatment odds are not good at all. At the very least a person should get some weight off before treating in that situation.
I think most all hepatologists would agree with that.
Mike
By the way, what did you do to get you platelet count up?
You couple cirrhosis with obesity and treatment odds are not good at all. At the very least a person should get some weight off before treating in that situation.
I think most all hepatologists would agree with that.
Mike
I really have to agree with you about individual response and predictors. The reason that some factors are called "predictors" is because the statistics they were drawn from were not 100%. Maybe 86% of those who cleared in the first 4 weeks SVR'd but of course 14% cleared by 4 and did not SVR. I was predicted to fail due to cirrhosis but cleared in a week and so far, so good. There's always another side and predictors are wonderful but they are only "predictors" not guarantees. You just have to roll the dice and rely on the best advice you can get.
I'm so pleased sx isn't too bad. I wish you all the best and hopefully we'll both be SVR at the end of this!
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