Aa
I can't stress the importance of treating- and this is why........
I know treating is a personal choice but I have lost 2 friends to hep C in a week.
Diane died Wed at the young age of 58 and this morning Steven died at 55. Both didn't treat maybe out of fear of tx, who knows. Even had they been a non responder it could have held the virus at bay and reduced the viral load till better drugs came to market. I had a low VL, geno 2B, etc and could have waited for better drugs but then I though what if I have another medical problem to deal with down the road and was unable to treat even with the new drugs because of the new problem. I decided to treat and do not regret doing so. Like I said, it's a personal choice and I'm not trying to talk any one into treating but please think hard and long before making your choice.
Beagle
Diane died Wed at the young age of 58 and this morning Steven died at 55. Both didn't treat maybe out of fear of tx, who knows. Even had they been a non responder it could have held the virus at bay and reduced the viral load till better drugs came to market. I had a low VL, geno 2B, etc and could have waited for better drugs but then I though what if I have another medical problem to deal with down the road and was unable to treat even with the new drugs because of the new problem. I decided to treat and do not regret doing so. Like I said, it's a personal choice and I'm not trying to talk any one into treating but please think hard and long before making your choice.
Beagle
I didn't have any issues prior, I was a regular blood donor so had been tested. I had the procedure and got sick. The doctor felt it was a drug reaction and the symptoms would subside, I developed dark urine and red spots all over my upper body and every other actue hep symptom except turn yellow. He was a pain management doctor and I was moving so I was switching doctors, took a few months to see a new doc. He started to think it was cancer because of the meningitis I guess and eventually decided to run a hep test after that. It does show up, though rarely, in clinical outpatient settings. The doctor thought that was where I got it, at least he conceded it did appear it was possible. We looked back at blood work and there was nothing before, then raised enzymes after and other clues like being sick. I was suprised he didn't deny it was possible to tell you the truth but he is a good guy and did say it is rare, but he had seen it happen. I have no intention of putting myself through a lawsuit over it, I just want to get well. Not to freak you out, but in another hospital in the next town 4 people got it having spinal epidurals at the same place. They are suing. All the same geno. There are several cases around the nation. Another setting it has been linked to...dialysis clinics or so I have read. No, I do not think it was inadequate equipment, or not sterilizing right, I think the virus can live a long time on any surface and is very durable and sneaky, even dried out and manages to find it's way around the sterilization. In that setting there are a great many patients a day. It isn't the only nasty infection/virus you can pick up in clinical settings, unfortunately.
Mr. BB: Just wanted to say, I am so sorry for your loss, having friends leave us is such a tragic thing for us to deal with, presently, a freind of mine just sent out a massive email to her friends, asking for prayers, in that she has been just told that she has only a month to live...she suffers from ovarian cancer, and has been able to beat it for the past 18 years, but it seems that her journey is nearing an end, so she asked for prayers, her name is Melinda...
Kalio: I feel that there has been enough heavy arguing around here lately, and it's probably upsetting to people who are treating and feeling bad, so please don't take this wrong, cause I respect your opinions very much, I consider you a "voice of reason" here and I'm very glad you post cause I've learned a lot from you...
But your statement of up to "40% of people taking tx hardly have any sides or very little"....I find curious. To me, it goes along with this thinking: I have gone to many boards and I will often hear people say...
It's mostly the people who have sides who frequent these boards and complain about them, the people that don't, don't bother to come to boards like this, they are just out there living their lives and contending with treatment almost side free, they don't feel the need to come to boards like this and complain of sides...
I have often heard things like this on this and other boards...
Being for the fact that many people say that the big pharma rarely ask questions about their treatment experiences except in relatively small trials, and some people mostly talk about their sides to their treatment nurses and not as much to their docs, I feel it would be hard to find an accurate analysis of these types of issues...I don't think it pays for the big pharma to shout out all the sides you might have with threatment, only "possible" side effects on a side effect sheet...
I've gone to more than a few Hep C support groups outside of these boards, and many, many people have reported having sides, much like the average of a board like this one....I don't see how you could take drugs like tx, and the various things it has to do to your blood cells, etc...and not have sides...
The people who hardly ever have any sides, to me, would be, if not in the extreme minority....they would be in the minority....And that's just my take....I just don't know if anyone could get an accurate analysis of something like that, being for the fact there is so little follow-up on these issues....
This is where I am getting controversial, and of course, I'm okay with countering opinions or I wouldn't say something like this..if and when I tx I hope I get a certain amount of sides, to make sure the sh*t's working!
I have talked or seen posts with many people who reported hardly getting any sides and never became anemic and then they didn't SVR, many people have said their treatment nurses have told them something along the same lines....and the treatment nurses are on the front lines...but when someone says something like this, all h*ll breaks out, and there are many countering views, this is just my gut instinct based on what I have read and heard...I think when all is said and done, I hope to have some sides when I take it, and I'm quite sure I will...
And of course there will be people who will say that they experienced very few sides and they SVRed anyway...there's nothing for sure with this disease...just judgment calls...
There's always the thing that you might as well put a good face on things, cause it's the only game in town anyway, and why go on about the bad parts? The RN in charge of my hysterectomy was wheeling me in to the OR, and I asked her, it this gonna hurt very badly? And she said, No, I've had one, they are not that bad...when I saw her afterwards, and I said, wow, you really lied to me huh? And she said, "what good would it have done for me to tell you the truth?" and I had to agree with her...
At the same time, I think Cuteus said, that most chemo procedures to cure or treat many disease involves a lot of hardship, and this is true, chemo for cancer aint' fun either, etc, etc... this is the reality...where the judgment call comes in is who and when? I am not of the opinion that all people who have hep c should treatm immediately...
As for sides, I for one want to be advised of the things I might expect, and maybe have them not be so bad, then have people tell me it won't be that bad, and then not be up for it...but that's just me...
I have intense migraines, etc...and I have to factor many things, not all of us think that doing present treatment now is the only way based on our own particular stats, there are so many variables if youre a stage 1 or 0...though of course I don't want to end up like Mr.BB's poor friend...so more shall be revealed...
Kalio: I feel that there has been enough heavy arguing around here lately, and it's probably upsetting to people who are treating and feeling bad, so please don't take this wrong, cause I respect your opinions very much, I consider you a "voice of reason" here and I'm very glad you post cause I've learned a lot from you...
But your statement of up to "40% of people taking tx hardly have any sides or very little"....I find curious. To me, it goes along with this thinking: I have gone to many boards and I will often hear people say...
It's mostly the people who have sides who frequent these boards and complain about them, the people that don't, don't bother to come to boards like this, they are just out there living their lives and contending with treatment almost side free, they don't feel the need to come to boards like this and complain of sides...
I have often heard things like this on this and other boards...
Being for the fact that many people say that the big pharma rarely ask questions about their treatment experiences except in relatively small trials, and some people mostly talk about their sides to their treatment nurses and not as much to their docs, I feel it would be hard to find an accurate analysis of these types of issues...I don't think it pays for the big pharma to shout out all the sides you might have with threatment, only "possible" side effects on a side effect sheet...
I've gone to more than a few Hep C support groups outside of these boards, and many, many people have reported having sides, much like the average of a board like this one....I don't see how you could take drugs like tx, and the various things it has to do to your blood cells, etc...and not have sides...
The people who hardly ever have any sides, to me, would be, if not in the extreme minority....they would be in the minority....And that's just my take....I just don't know if anyone could get an accurate analysis of something like that, being for the fact there is so little follow-up on these issues....
This is where I am getting controversial, and of course, I'm okay with countering opinions or I wouldn't say something like this..if and when I tx I hope I get a certain amount of sides, to make sure the sh*t's working!
I have talked or seen posts with many people who reported hardly getting any sides and never became anemic and then they didn't SVR, many people have said their treatment nurses have told them something along the same lines....and the treatment nurses are on the front lines...but when someone says something like this, all h*ll breaks out, and there are many countering views, this is just my gut instinct based on what I have read and heard...I think when all is said and done, I hope to have some sides when I take it, and I'm quite sure I will...
And of course there will be people who will say that they experienced very few sides and they SVRed anyway...there's nothing for sure with this disease...just judgment calls...
There's always the thing that you might as well put a good face on things, cause it's the only game in town anyway, and why go on about the bad parts? The RN in charge of my hysterectomy was wheeling me in to the OR, and I asked her, it this gonna hurt very badly? And she said, No, I've had one, they are not that bad...when I saw her afterwards, and I said, wow, you really lied to me huh? And she said, "what good would it have done for me to tell you the truth?" and I had to agree with her...
At the same time, I think Cuteus said, that most chemo procedures to cure or treat many disease involves a lot of hardship, and this is true, chemo for cancer aint' fun either, etc, etc... this is the reality...where the judgment call comes in is who and when? I am not of the opinion that all people who have hep c should treatm immediately...
As for sides, I for one want to be advised of the things I might expect, and maybe have them not be so bad, then have people tell me it won't be that bad, and then not be up for it...but that's just me...
I have intense migraines, etc...and I have to factor many things, not all of us think that doing present treatment now is the only way based on our own particular stats, there are so many variables if youre a stage 1 or 0...though of course I don't want to end up like Mr.BB's poor friend...so more shall be revealed...
Oh, Mr. BB, I am so sorry for you loss of two friends. I have lost one friend back home, when he found out it was too late to treat and he was gone within a month. My other friend waited so long to do anything and now his damage is to great and they can not treat and they do not give him long to live. And, just two weeks ago I lost my 1st cousin to complete liver failure, due to drinking. Was in the hospital about a week and then died.
I am 51 Geno 1b, vl 5.3 million. I was first diagnoised after a blood drive, due to the Northride, Ca. earthquake. I received a letter from the Health Dept. The first sentence on that letter read, Let me assure you this is not about Aids. I was so relieved that I cried, tears of joy. But, little did I know what HepC was. I was not allowed to treat because there was no damage yet; so I was told. Went about my life and in 2003, my husband was diagnoised with Hodgkins, after signing escrow on a new home. We struggled through his treatment and I went back to work to make things more simple for us. My youngest almost went off the deep end, His father did look like death warmed over. I had to quit work and stay with the kids; Even bigger struggle, but we made it.
This is when I decided to have everything checked out and went on tx Dec. 30, 2005. I saw how it effected my kids; thinking they are going to loose their parent or both. No, if, ands, or buts about it; I started treatment.
Sometimes, I did not think I would make it through tx. It got rough sometimes; but then you have a couple of good weeks and that is what lets you know this is VERY DOABLE. I wish I could have and would have treated years ago; when my body was still young. I am now 26/48. UND at 12 weeks and again at 24 weeks.
Sorry for going on and on. But, do give tx and long hard look and do what is right for you.
Cajun
I am 51 Geno 1b, vl 5.3 million. I was first diagnoised after a blood drive, due to the Northride, Ca. earthquake. I received a letter from the Health Dept. The first sentence on that letter read, Let me assure you this is not about Aids. I was so relieved that I cried, tears of joy. But, little did I know what HepC was. I was not allowed to treat because there was no damage yet; so I was told. Went about my life and in 2003, my husband was diagnoised with Hodgkins, after signing escrow on a new home. We struggled through his treatment and I went back to work to make things more simple for us. My youngest almost went off the deep end, His father did look like death warmed over. I had to quit work and stay with the kids; Even bigger struggle, but we made it.
This is when I decided to have everything checked out and went on tx Dec. 30, 2005. I saw how it effected my kids; thinking they are going to loose their parent or both. No, if, ands, or buts about it; I started treatment.
Sometimes, I did not think I would make it through tx. It got rough sometimes; but then you have a couple of good weeks and that is what lets you know this is VERY DOABLE. I wish I could have and would have treated years ago; when my body was still young. I am now 26/48. UND at 12 weeks and again at 24 weeks.
Sorry for going on and on. But, do give tx and long hard look and do what is right for you.
Cajun
No, I haven't. This is causing me a great deal of stress which I know is not good for me. I will probably wait and see how the tx's affect me and go from there. My other concern is my weight. I have been trying to gain a few lbs but its not happening. Hope your Dr.'s visit goes well. Right now I am looking forward to the week vacation I have planned with my kids in August. I want to sit on the beach (which I know is a no no on tx) and not think about anything and just rest.
I'm new here too but I did just wanna say that I too am really sorry to hear your news.... such a tragic loss of life.
Hi doglover and merlino, Doglover, I too just got diagnosed in April. I remmeber seeing you post at just about the same time as I had gotten my news. I just had my biopsy...I'm a 1A, 27M vl and haven't seen a doc yet for results but on the Knodell scale, I'm a 5. Bx says 0 - Fibrosis, 3- inflammation, 1 - periportal/briding necrosis and 1 - intralobular necrosis. I've read everything I can find about bx and THINK, the operative word here being, think, that's a good result. I'm not counting on anything for sure till I see a doc and my appointment was just moved again now I won't get in till Sept. I too am on the fence about treating. If I can get into the vertex-950 trials, I will strongly consisder treating. Don't know if that's the same study as someone mentioned above, but there is no placebo in any of the 4 arms of this study. Worse case scenario, I'd get in the arm that does the standard 48 pegs of peg and rib. I have a call in to the coordinator to ask if they do prescribe resuce drugs. I've talked with her several times...really nice person. I have her direct # and am hoping she'll be able to answer this question.....then we'll all know once and for all. My hubby's np is saying sure... of course Johns Hopkins will be prescribing drugs if you need them but people on this board who probably know better are saying no. So, I really wanna know for sure. Will let yo all know when I find out.
I've had this disease for approx. 24 - 34 years, could be anywhere in between but I'm sure I've had it at least 24 yrs. If fibroseis is really 0, maybe I will wait to treat if I don't get into vertex trials. Am just not sure but if I do get in, I will probly treat. There are such compelling reasons on both sides to treat or wait.
Merlino, After reading everything I could find, I decided not to have my original doctor treat. He wasn't as knowledgeable as I needed him to be. inho, he would have treated me using a "cookie cutter" approach. I'm absolutely anal about research, as probly a lot of ppl on this board are, and everything I've read says to get a bx. Again, imho, that is so important and if your doctor is giving you a fibrosure test in lieu of bx, I would strongly question that and/or get a 2nd opionion.
djay, I too was shocked to know that a 9 or 10 yr. old could be an addict, and am so glad to hear that he's doing so well. That's gotta be devastating to know your children are into that and awesome to know he's overcome it.
Be well everyone, Char
Hi doglover and merlino, Doglover, I too just got diagnosed in April. I remmeber seeing you post at just about the same time as I had gotten my news. I just had my biopsy...I'm a 1A, 27M vl and haven't seen a doc yet for results but on the Knodell scale, I'm a 5. Bx says 0 - Fibrosis, 3- inflammation, 1 - periportal/briding necrosis and 1 - intralobular necrosis. I've read everything I can find about bx and THINK, the operative word here being, think, that's a good result. I'm not counting on anything for sure till I see a doc and my appointment was just moved again now I won't get in till Sept. I too am on the fence about treating. If I can get into the vertex-950 trials, I will strongly consisder treating. Don't know if that's the same study as someone mentioned above, but there is no placebo in any of the 4 arms of this study. Worse case scenario, I'd get in the arm that does the standard 48 pegs of peg and rib. I have a call in to the coordinator to ask if they do prescribe resuce drugs. I've talked with her several times...really nice person. I have her direct # and am hoping she'll be able to answer this question.....then we'll all know once and for all. My hubby's np is saying sure... of course Johns Hopkins will be prescribing drugs if you need them but people on this board who probably know better are saying no. So, I really wanna know for sure. Will let yo all know when I find out.
I've had this disease for approx. 24 - 34 years, could be anywhere in between but I'm sure I've had it at least 24 yrs. If fibroseis is really 0, maybe I will wait to treat if I don't get into vertex trials. Am just not sure but if I do get in, I will probly treat. There are such compelling reasons on both sides to treat or wait.
Merlino, After reading everything I could find, I decided not to have my original doctor treat. He wasn't as knowledgeable as I needed him to be. inho, he would have treated me using a "cookie cutter" approach. I'm absolutely anal about research, as probly a lot of ppl on this board are, and everything I've read says to get a bx. Again, imho, that is so important and if your doctor is giving you a fibrosure test in lieu of bx, I would strongly question that and/or get a 2nd opionion.
djay, I too was shocked to know that a 9 or 10 yr. old could be an addict, and am so glad to hear that he's doing so well. That's gotta be devastating to know your children are into that and awesome to know he's overcome it.
Be well everyone, Char
SAID: got so sick because I got it during a spinal procedure where they shoot drugs in your spine for back issues
Lord I can't remember the name - something therapy all one word my GOD I had this for TWO YEARS and it was the most SICK TWISTED DISTURBED AND PAINFUL thing I ever experienced all to be told later by SEVERAL other doctors that it DID NOT WORK. Polotherapy. GOD what was the name! I can't remember!
The doc injected me every week thru the ligament into my herniations in my spine- NOT TRIGGER POINT (most people think that is what I am talking about) = you could hear the people in there before you just crying it was horrible...do you really think you got it this way?
How? I mean I did this in '93 or so so it was maybe too late for me to have gotten the disease that way but I am very curious as to how you think you got it that way - reused syringes?
never never never thought of this. God I wish I could remember what it was called - I have t go thru my old med records I must have blanked it out I hated it so much my mother used to have to drive me to the doc or I would just PRETEND I went and I wouldnt.
Lord I can't remember the name - something therapy all one word my GOD I had this for TWO YEARS and it was the most SICK TWISTED DISTURBED AND PAINFUL thing I ever experienced all to be told later by SEVERAL other doctors that it DID NOT WORK. Polotherapy. GOD what was the name! I can't remember!
The doc injected me every week thru the ligament into my herniations in my spine- NOT TRIGGER POINT (most people think that is what I am talking about) = you could hear the people in there before you just crying it was horrible...do you really think you got it this way?
How? I mean I did this in '93 or so so it was maybe too late for me to have gotten the disease that way but I am very curious as to how you think you got it that way - reused syringes?
never never never thought of this. God I wish I could remember what it was called - I have t go thru my old med records I must have blanked it out I hated it so much my mother used to have to drive me to the doc or I would just PRETEND I went and I wouldnt.
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