Aa
to treat or not to treat hep c
i was just diagnosed 11/05, which was quite a shock since I requested PCR in 1999 and 2004 and my doctor told me both times that the results were negative. Then I found out last month that she read the results incorrectly...wow
so, I am stage 2, grade 2, and my vl is 3,500,000.
the thought of treatment is overwhelming to me right now. one day i think do it and the next i think don't.
what do you all think
so, I am stage 2, grade 2, and my vl is 3,500,000.
the thought of treatment is overwhelming to me right now. one day i think do it and the next i think don't.
what do you all think
Just to reiterate what the others have said - treatment is a personal decision based on a LOT of facts.
I am 13/48 Geno 1A & 1B. staring vl was only 568,000 BUT I have Grade2 Stage 2 so it's NOT a viralLOAD thing as some people (like Pam Anderson) falsley state. Watching your viral load doesn't mean anything really EXCEPT for reaching SVR you know what I mean = watching your liver with biopsy is a MUCH better indicator of deciding to treat.
Had this 25 years supposedly - used to be a hard core drug lover, had 4 transfusions so who knows WHERE and WHEN I really got it. That drove me crazy until I realized it didn't matter at all the fact is that I have it end of story.
I am VERY glad that I am treating. I find it doable (except the anemia which they fixed with Epogen). I was 411 at week 4 and expecting my 12 week back probably Monday. It WILL be undetectible cause I say so! and If it wasn't...I would just continue on killing these suckers off and getting them out of my body as best as I can.
They don't deserve to be here at all.
Best of luck with your decision.
Congrats Coug! that'll prob give you the impetus you need to keep going! That's really great! Maybe all those "peace" signs gave you good karma, wink wink.
Kalio: Oh, I know what you mean about docs, I guess I've told my story about having severe panic attacks in my 20's, so much so that I was going to the ER, went to 3 different Bev Hills high falutin' docs and they just kept giving me valium and sending me away. Went to an "integrative specialist" he ran tests on me cause he suspected hypoglycemia, he was right, told me to eat every 3 hours or so, protein with complex carbs, zap, my severe panic attacks went away. Now some moderate anxiety is with me, prob due to having menopause and hep at the same time. Sometimes when docs can't properly diagnose, they tell you something to the effect that "everybody has it" which is code for it's all in your head, or they just give you a pill.
Either way it's a way to shut you up till they have to see you again. I also think the tests they have now are just not advanced and sophisticated enough to diagnose some of these conditions that go along with chronic illness, and they don't like to go by "symptoms patients tell them about" unless they rely more on their own intuition...and I watch that TV program "House" to get some of that, wouldn't it be great if we could all get a doc like that!
Lazyhead: many people are in that same boat, it's good that you are studying research and trials, listening to stories, etc. Finding out all you can about hep c, you'll come to your own decision about it...as you can see many people say that treatment is doable. Hope you can get some answers soon.
Kalio: Oh, I know what you mean about docs, I guess I've told my story about having severe panic attacks in my 20's, so much so that I was going to the ER, went to 3 different Bev Hills high falutin' docs and they just kept giving me valium and sending me away. Went to an "integrative specialist" he ran tests on me cause he suspected hypoglycemia, he was right, told me to eat every 3 hours or so, protein with complex carbs, zap, my severe panic attacks went away. Now some moderate anxiety is with me, prob due to having menopause and hep at the same time. Sometimes when docs can't properly diagnose, they tell you something to the effect that "everybody has it" which is code for it's all in your head, or they just give you a pill.
Either way it's a way to shut you up till they have to see you again. I also think the tests they have now are just not advanced and sophisticated enough to diagnose some of these conditions that go along with chronic illness, and they don't like to go by "symptoms patients tell them about" unless they rely more on their own intuition...and I watch that TV program "House" to get some of that, wouldn't it be great if we could all get a doc like that!
Lazyhead: many people are in that same boat, it's good that you are studying research and trials, listening to stories, etc. Finding out all you can about hep c, you'll come to your own decision about it...as you can see many people say that treatment is doable. Hope you can get some answers soon.
Sounds like you are working out your decision to treat quite logically. You mention that the risk management at the clinic will settle with you (I assume because of their faulty diagnosis)- is that why you are trying to determine the dollar value of your treatment? Seems like this settlement will not be based on that at all because those costs would be the same 5 years ago as now. Probably you just need a lawyer to protect your interest and make sure they treat you fairly.
I am 58, found out I had hep C antibodies in 1993 but ignored it more or less. This year I decided it was time, so I had the tests run, found out the virus was active, and decided to treat. I am Genotype 1a, pre treatment viral load was 1.52 million IU/mL, and my biopsy was grade 1, stage 1. So even though I estimate my infection to have been 35 years ago (IVDU), the damage was minimal. I am now at week 23 out of 48 and am clear. I work full time and the only day I missed was to get the biopsy (altho I do admit to being much less productive). My sides have been fairly good - almost none at all for the first 12 weeks - but my white blood and red blood counts have dropped to the point of needing additional meds to boost them (this is common and you need to consider the cost of those - Procrit and Neupogen - when you are looking at co-pay costs)
Cost wise, I pay 4 copays of $30 a month for meds which retail at close to $6000. My trips to the GI are minimal - pretreat, week 4, week 12, and now week 24. I have labs run - at first weekly and now every 2 weeks, but the cost of that is minimal too. The PCR's are run at 4 weeks(if you can talk the doc into it) and 12 wks, 24 wks, 36 wks and 48 wks. Hope that helps.
I like your name too, but what comes to mind is FloJo - the incredible athlete - not a snotty nose -- LOL
Good luck with this difficult decision
frijole
I am 58, found out I had hep C antibodies in 1993 but ignored it more or less. This year I decided it was time, so I had the tests run, found out the virus was active, and decided to treat. I am Genotype 1a, pre treatment viral load was 1.52 million IU/mL, and my biopsy was grade 1, stage 1. So even though I estimate my infection to have been 35 years ago (IVDU), the damage was minimal. I am now at week 23 out of 48 and am clear. I work full time and the only day I missed was to get the biopsy (altho I do admit to being much less productive). My sides have been fairly good - almost none at all for the first 12 weeks - but my white blood and red blood counts have dropped to the point of needing additional meds to boost them (this is common and you need to consider the cost of those - Procrit and Neupogen - when you are looking at co-pay costs)
Cost wise, I pay 4 copays of $30 a month for meds which retail at close to $6000. My trips to the GI are minimal - pretreat, week 4, week 12, and now week 24. I have labs run - at first weekly and now every 2 weeks, but the cost of that is minimal too. The PCR's are run at 4 weeks(if you can talk the doc into it) and 12 wks, 24 wks, 36 wks and 48 wks. Hope that helps.
I like your name too, but what comes to mind is FloJo - the incredible athlete - not a snotty nose -- LOL
Good luck with this difficult decision
frijole
Amazing! Yes, it's amazing you can do all that while under treatment. I'm ready to start my 4th treatment in two weeks and I remember I was always panting and gasping for air while doing physical things on the last three treatments, although I never had Anaemia.
Do you take Procrit? Is Tylenol okay under treatment? I was told that a steady dosage of that isn't good for the liver and instead, I should take Ibuprofen 800mg when in pain.
Naturally I also have the very powerful Oxycontin 80mg, which in my opinion is overkill for pain if you're going to do anything physical, but a wonderful buzz before you're knocked out. I'm interested in how long you've been feeling like you do under treatment and how your white blood count was last...
Magnum
Do you take Procrit? Is Tylenol okay under treatment? I was told that a steady dosage of that isn't good for the liver and instead, I should take Ibuprofen 800mg when in pain.
Naturally I also have the very powerful Oxycontin 80mg, which in my opinion is overkill for pain if you're going to do anything physical, but a wonderful buzz before you're knocked out. I'm interested in how long you've been feeling like you do under treatment and how your white blood count was last...
Magnum
cougar - You have come a long ways. My very heartfelt congratulations. Half way there too. -- Kind of funny isn't it - when you tell non hep C'ers that you are clear -- don't they all ask, "well, can you stop now?" --- don't we wish. I am so glad you are feeling better too.
flojo - So very sorry that you have hep C. It truly is unbelievable that your doctor misread the lab. However, the nurse at the GI's office has misread a PCR to me on the phone (mixed up copies and IU), and so has the nurse at the hemotologist's office (got confused on the log reading and thought it was an IU amount (I was really curious when she told me they ran a test sensitive to .7IU - when in fact, it was the log range).Get copies of everything and learn to read these tests yourself. Frankly, I think they are hard tests to decipher.
All you really can do is go forward from here. I was diagnosed in May and started treatment in July. I made two lists -- reasons to treat and reasons to not treat -- and just started listing things. Your health, the way you feel, is, of course a big factor. Your age - are you past child bearing age, or do you want kids? Is your insurance good? What is your age (treatment (tx) is easier on the body and more effective when you are younger). Are your committements such that you could treat right now (we all have to reduce our obligations somewhat. I work, but do little else outside of work).
We were all scared, as you are, but you are amoung friends here.
frijole
flojo - So very sorry that you have hep C. It truly is unbelievable that your doctor misread the lab. However, the nurse at the GI's office has misread a PCR to me on the phone (mixed up copies and IU), and so has the nurse at the hemotologist's office (got confused on the log reading and thought it was an IU amount (I was really curious when she told me they ran a test sensitive to .7IU - when in fact, it was the log range).Get copies of everything and learn to read these tests yourself. Frankly, I think they are hard tests to decipher.
All you really can do is go forward from here. I was diagnosed in May and started treatment in July. I made two lists -- reasons to treat and reasons to not treat -- and just started listing things. Your health, the way you feel, is, of course a big factor. Your age - are you past child bearing age, or do you want kids? Is your insurance good? What is your age (treatment (tx) is easier on the body and more effective when you are younger). Are your committements such that you could treat right now (we all have to reduce our obligations somewhat. I work, but do little else outside of work).
We were all scared, as you are, but you are amoung friends here.
frijole
Since you know that you are a stage two, I guess you must have had a biopsy?
I would have lost confidence in that dr, the moment he said I read that incorrectly, for 5 years? Was he too sure of himself to call someone and confirm what he thought was the result? GGRRR! I wish he was my doctor, I would have let him have it.
Now you are in schock and feeling lost, we all were, in the begining. Many experts believe that you should treat while your liver is in relatively good shape, because the sides tend to be less severe and the chances of completing and achieving the end of tx with a sustained viral response (SVR) or cured as some drs call it, are greater than when your health deteriorates.
here is an article on the watch and wait
http://www.prnewswire.co.uk/cgi/news/release?id=143867
Also to keep in mind is that although it is called hepatitis, because the virus prefers that organ for replication, it is not only a liver disease. Your whole body suffers from the presence of the virus. Some research finds it in the CNS, intestinal tract, adrenal, lymph, etc. It can affect the kidneys also.
on extrahepatic symptoms:
http://www.medadvocates.org/diseases/hcv/extrahepatic.html
you have to decide what you want to live with, hep c and possible development of further symptoms, or a temporary treatment discomfort that can give you a 50% or more chance of a cure.
The so called long term effects from the meds, which most people do not get, or get in a non severe, non dysfunctional form, have not been proven by any medical research I have read. You will hear a lot of anecdotal stories that will not include whether they have these symtoms to some extent, prior to tx.
I was a 1a, 50+, mild liver damage, extra hepatic symptoms, willing to give tx a shot to see how I would respond to it, and to get rid of this pesky invader. After 74 wks, which included dragging myself to work every day and to the Y, twice a wk, I got my SVR. NOT A MOMENT OF REGRET.
I hope you find your answers. Listening to everyone's reaction to the tx and choosing from that experience will be your best resource.
I would have lost confidence in that dr, the moment he said I read that incorrectly, for 5 years? Was he too sure of himself to call someone and confirm what he thought was the result? GGRRR! I wish he was my doctor, I would have let him have it.
Now you are in schock and feeling lost, we all were, in the begining. Many experts believe that you should treat while your liver is in relatively good shape, because the sides tend to be less severe and the chances of completing and achieving the end of tx with a sustained viral response (SVR) or cured as some drs call it, are greater than when your health deteriorates.
here is an article on the watch and wait
http://www.prnewswire.co.uk/cgi/news/release?id=143867
Also to keep in mind is that although it is called hepatitis, because the virus prefers that organ for replication, it is not only a liver disease. Your whole body suffers from the presence of the virus. Some research finds it in the CNS, intestinal tract, adrenal, lymph, etc. It can affect the kidneys also.
on extrahepatic symptoms:
http://www.medadvocates.org/diseases/hcv/extrahepatic.html
you have to decide what you want to live with, hep c and possible development of further symptoms, or a temporary treatment discomfort that can give you a 50% or more chance of a cure.
The so called long term effects from the meds, which most people do not get, or get in a non severe, non dysfunctional form, have not been proven by any medical research I have read. You will hear a lot of anecdotal stories that will not include whether they have these symtoms to some extent, prior to tx.
I was a 1a, 50+, mild liver damage, extra hepatic symptoms, willing to give tx a shot to see how I would respond to it, and to get rid of this pesky invader. After 74 wks, which included dragging myself to work every day and to the Y, twice a wk, I got my SVR. NOT A MOMENT OF REGRET.
I hope you find your answers. Listening to everyone's reaction to the tx and choosing from that experience will be your best resource.
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