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Medical Forum / Diseases and Disorders / Hepatitis / April 2007Conflicting opinions...
So... I have 1a. I found out back in Aug. I've seen two Primary Care docs and one PA-C (Physicians Assistant- Certified) plus chatted with two Psychiatrists and one psychologist. I need a few things clarified because I'll more than likely have my biopsy and begin treatment within the next three months. I feel this group and one of the "experts" up there have made me "certain" that the biopsy is needed, if only as a "baseline" (even though one of the docs said they'd want treatment for me even without a biopsy). I've heard that 1a's have a 40% chance of clearing the virus... I've heard that if your liver enzymes are "normal" at the beginning of treatment, the treatment might "work better"... Plus, I've heard that if anything goes wrong in treatment, I can blame Elmo... Help! what's right and wrong about what I know so far? ~ Alex Responding to my own message 'cause I forgot something: Some of my "experts" act like I've got something that absolutely will kill me if I do nothing and some other "experts" that have actually said, "This is not a death sentence" (that's kinda like "Don't walk on the grass...). My studies (incomplete) say there's no way to know how bad it is except with a biopsy and that if the liver begins to be adversely affected it's quickly downhill from there... Again, HELP! What's right and wrong about what I know so far? ~ Alex > Responding to my own message 'cause I forgot something: > > Some of my "experts" act like I've got something that absolutely will > kill me if I do nothing and some other "experts" that have actually > said, "This is not a death sentence" (that's kinda like "Don't walk on > the grass...). This "not a death sentence" line has become popular in the medical profession these last few years, and it annoys me greatly because it's entirely subjective and provides no information whatsoever to the patient. Why can't these clowns just give us the straight goods? Perhaps because they don't know? > So... > I have 1a. [quoted text clipped - 21 lines] > > ~ Alex A biopsy is the most reliable, argueably the only, way to determine the extent of liver damage, but there is some pain (if I was a doctor, I would have said "discomfort") and some risk involved. It is valuable as a baseline if you plan on getting another one after tx, but other than that, it's of no real use other than to contribute to medical research (not a bad thing). There is no proven relationship between liver function test results (enzymes, ALT, STP, BMW etc) and success of treatment. Genotype 1 treatment has a 40-60% success rate and even higher, depending on the study you read and depending on a host of other factors including but not limited to age, race and sex (which one, not if you're having any or not). Some of these stats were formed before the use of pegylated interferon, so I think to say that the higher numbers are more accurate. Yes, it is entirely Elmo's fault if anything goes wrong in treatment, especially if it's related to your bowels. Waterspider Re: Conflicting opinions... Yes, it is entirely Elmo's fault if anything goes wrong in treatment, especially if it's related to your bowels. Waterspider //////// Yep...next time you and Alex get diarrhea, blame me. :-) elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Well! I knew I liked this group and today doesn't change it. I'm nearing 61 and I've been a fairly "brave" person all my life (my trepidation with socializing is due to my chronic depression and doesn't mean I'm not brave, just horribly picky about what I'm willing to feel...), however, this Hep C thingie has got me "almost" quackin' in ma boots. This group (and maybe this new PA-C at the VA) are the only people who make sense and help me suck it up... Waterspider, "Thip", and greyhackles, Thanks for your responses and your advice about Elmo. Elmo, Thanks for being so weird!!! ~ Alex Naturally, with the effects of my anti-depressant, I forgot a question--maybe the most important, if I focus on hour-to-hour living... The PA-C at the VA said that my fatigue (which shouldn't be from the Anti-D since I've been on it for 8 months and the Psyche says I've "adjusted") is from the "presence" of the virus in my blood. Another doc says that's bullshit. Opinions? ~ Alex > Naturally, with the effects of my anti-depressant, I forgot a > question--maybe the most important, if I focus on hour-to-hour [quoted text clipped - 11 lines] > > ~ Alex The fatigue is definitely related to the hep-c virus... I think that's the one symptom we all have/had in common. I spent many years going to different doctors, asking "why am I so tired all the time?" I got various stupid guesses from them, one doc blamed my bc pills. I wish more doctors would get a clue. Sara Ugh that is so bullshit. What kind of doctor is that!? Every list of HCV symptoms ever published lists fatigue as one of the top symptoms. And even though the fatigue can be severe enough to be disabling, the exact cause isn't known (!) It seems so intuitive and obvious that fighting a chronic infection would make a body tired, but apparently some docs just don't get it. I have seen some articles on research looking into the exact mechanism of fatigue and brain fog but I can't come up with one right now... But a glance at any of the major medical websites, eg Mayo Clinic, or Centers for Disease Control, will show fatigue as one of the most common symptoms. Actually I have spent quite a bit of time searching the literature for a feasible explantion of HCV fatigue (blood sugar? brain chemistry? hormones?) No clear answer. My own experience is that it tends to be more of a mental problem than a physical one. Once my tx doctor told me rather bluntly "I don't have a fatigue-o-meter." If they can't measure it, it doesn't exist. hang in there Al kj Normin & kjoh, Thanks a heap for the feedback! I felt the PA-C knew her stuff... Here's a follow-up: Since I've only been feeling "supreme" fatigue since about January, could this indicate a stepping up of the virus's activity (not liver damage but viral replication)? ~ Alex I'm starting to think that the Hep C induced fatigue could be viewed as the way the body moderates itself to allow the liver to keep up with what it going on with the rest of the corporeal system. Just a brainwave, no pubmeds nor nothin to back that up, but it makes sense, the body does try to deal with itself to a big extent. cactus jammies ============ > Normin & kjoh, > [quoted text clipped - 5 lines] > > ~ Alex "...no pubmeds nor nothin to back that up, but it makes sense, the body does try to deal with itself to a big extent..." Whaaa!? No pubmeds? What kind of an outfit is this? I think you are right the fatigue is our bodies telling us to take a nap :-) kj zzzzzz That's a reasonable question Alex. It seems counterintuitive, but so far there isn't any evidence that changes in viral load affect the way we feel. There also isn't any evidence that higher viral loads mean increased liver damage. HOWEVER, a lack of evidence don't mean it ain't so. It might mean that the research hasn't been done yet. There is so much yet to learn about the basic biology of the virus and how it affects systems and organs other than our liver. kj Re: Conflicting opinions... Group: alt.support.hepatitis-c Date: Thu, Apr 5, 2007, 1:00pm (CDT-2) From: amzolt@gmail.com (amzolt) Naturally, with the effects of my anti-depressant, I forgot a question--maybe the most important, if I focus on hour-to-hour living... The PA-C at the VA said that my fatigue (which shouldn't be from the Anti-D since I've been on it for 8 months and the Psyche says I've "adjusted") is from the "presence" of the virus in my blood. Another doc says that's bullshit. Opinions? ~ Alex /////////// If your virus didn't wipe your a.s out before you started tx, then that's not the cause now. It's almost certainly the drugs you're taking, or it may be something else. Alot of us had our thyroid go south during tx, and that will cause fatigue every bit as much if not moreso than the tx drugs. elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum On Apr 5, 10:45 pm, elmoemer...@webtv.net wrote: > If your virus didn't wipe your a.s out before you started tx, then > that's not the cause now. Bu...But, I haven't started Tx yet... Re: Conflicting opinions... Group: alt.support.hepatitis-c Date: Fri, Apr 6, 2007, 3:52am (CDT-2) From: amzolt@gmail.com (amzolt) On Apr 5, 10:45 pm, elmoemer...@webtv.net wrote: If your virus didn't wipe your a.s out before you started tx, then that's not the cause now. Bu...But, I haven't started Tx yet... //////////// Then it probably IS the virus causing your fatigue. ahahahahahahahahah!! Please disregard my prior post... but keep an eye on your thryroid when you do start. :-) elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Re: Conflicting opinions... Group: alt.support.hepatitis-c Date: Fri, Apr 6, 2007, 7:39am From: elmoemerson@webtv.net Re: Conflicting opinions... Group: alt.support.hepatitis-c Date: Fri, Apr 6, 2007, 3:52am (CDT-2) From: amzolt@gmail.com (amzolt) On Apr 5, 10:45 pm, elmoemer...@webtv.net wrote: If your virus didn't wipe your a.s out before you started tx, then that's not the cause now. Bu...But, I haven't started Tx yet... //////////// Then it probably IS the virus causing your fatigue. ahahahahahahahahah!! Please disregard my prior post... but keep an eye on your thryroid when you do start. :-) elmo ////// AND....have your left eye keep an eye on your right eye and vice versa. elmo thryroids are mutant hemerhoids http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Elmo: Thank you! And, most important is my response to your other advice. About all I can say is: Eye, eye!!! Re: Conflicting opinions... Group: alt.support.hepatitis-c Date: Sun, Apr 8, 2007, 7:29am (CDT-2) From: amzolt@gmail.com (amzolt) Elmo: Thank you! And, most important is my response to your other advice. About all I can say is: Eye, eye!!! /////// It'll make you cross-eyed with delight and equally as dizzy if you do it long enough. :-) elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum "....cross-eyed with delight.." Wow! Elmo's a poet!! ~Alex > A biopsy is the most reliable, argueably the only, way to determine the > extent of liver damage, but there is some pain (if I was a doctor, I would > have said "discomfort") Or if it turns for you like it turned out for me, it's no biggie. I asked the doc not to give me any pain med during the procedure, but she said they "have to". I've had 3, and for me, it's no more than a flu shot. I think the concept, knowing that it's not a shot but a big needle going into your liver and sucking out a sample, is what may exaggerate the sensation of pain. The first time I had it done, they didn't tell me what to expect so the whole thing was more of an annoyance. The 3rd one they made a very big deal about it, I was "admitted", they locked up my "valuables" (20 bucks, my license, and insurance card), I had to hang out behind curtain #3 while people hanging on the brink of life and death were treated next to me. Then I was wheeled up, they did the ultrasound (warning: may tickle), gave me some very nice warming painkiller of some kind (but I was glad I asked for the absolute minimum), they stuck me, then I had to wait to make sure they "got it", then reverse the procedure. Oh yeah - and the hospital lunches are pretty good these days. Hope yours goes as well - you might as well have a positive expectation... >> A biopsy is the most reliable, argueably the only, way to determine the >> extent of liver damage, but there is some pain (if I was a doctor, I would [quoted text clipped - 5 lines] > >I've had 3, and for me, it's no more than a flu shot. Well I would think without the pain meds you would not be saying that. :) The pain meds are the best part. > Well I would think without the pain meds you would not be saying that. > :) > > The pain meds are the best part. I didn't get any pain meds on the first 2 biopsies. >> Well I would think without the pain meds you would not be saying that. >> :) >> >> The pain meds are the best part. > >I didn't get any pain meds on the first 2 biopsies. Did it feel like a flu shot? The biopsy will determine to amount of damage (or lack thereof) to your liver. For what it's worth, I'd have it and then decide what to do. If your liver's in middling to bad shape, treat. If (like my friend) you have no damage, you can afford to hold off a bit and see if some other treatment comes down the pike. The "baseline" will be your viral load, which is a blood test. Although it fluctuates, it will give your doctor a starting point for the 12-week checkup to see if you're responding. Normal or abnormal enzymes have no effect on treatment. 1a is hard to get rid of and takes a 48-week treatment. If you try to blame Elmo for anything, you'll have to go through Big Mama here first! :-Þ > So... > I have 1a. [quoted text clipped - 21 lines] > > ~ Alex If you try to blame Elmo for anything, you'll have to go through Big Mama here first! :-Þ /////////// If I get a bill from somebody whose keyboard was ruined when they spewed coffee all over it, I aint paying. Don't worry, Thipper, 'they' can't touch me. :-) elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum >So... >I have 1a. [quoted text clipped - 21 lines] > >~ Alex While a biopsy is the best way to determine the current state of your liver, a biopsy is not needed to begin therapy. It could be valuable for someone considering *not* doing therapy, but if you're already thinking you'll do the treatment, you could skip it for now. The stats on genotype 1s is still in the 50% +/- 10% range for first timers, depending on what set of studies are referenced. There is no proven relationship between LFTs and treatment success. You can certainly try to blame Elmo, but he's a pretty slippery dood so you better practice your head locks first ;-) Cheers /greyhackles You can certainly try to blame Elmo, but he's a pretty slippery dood so you better practice your head locks first ;-) Cheers /greyhackles ///////////// Yeah.....listen to Grey. He knows what he's talking about. :-8 elmo slithery dogs http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum > The stats on genotype 1s is still in the 50% +/- 10% range for first timers, > depending on what set of studies are referenced. And that includes non-responders and people who couldn't or didn't complete treatment. I know there are good signs, but I wonder what the exact stats are on people who go near 0 by week 12 and stay on the entire 48-week course at full strength? Plus, I've heard that if anything goes wrong in treatment, I can blame Elmo... ~ Alex ///////////// That's correct...you can blame moi. Alot of good that's going to do you, tho. :-) elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum |
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