Aa
LIVER PAIN
I hope this is not a dumb question but I would like some feed back, I have been feeling ( know it is there ) my live more on tx It hurts sometimes. Is that normal? I find ouy my blood work today since the DR cut my riba hope my hbg has gone back up so we can up the riba again, I will post my findings later, Thank-you.PLN
What makes sense to me is that your liver doctor deals with livers that DO NOT heal and get progressively worse and worse not better and he does transplants so it makes sense he would not see "healing liver" phenomenon in his pratice, he is a transplant specialist, he puts new ones in. All the people saying their doctors have said this happens are doctors dealing with people who's livers DO heal.
I hardly think that "healing pains" would be listed on warning labels, warnings are cautionary by nature and having some healing pain or restructuring pain is not a side effect of the drugs themselves.
I hardly think that "healing pains" would be listed on warning labels, warnings are cautionary by nature and having some healing pain or restructuring pain is not a side effect of the drugs themselves.
I wasn't ignoring your post but I haven't known what I can say that would be repsponsive. I'm gonna try.
As to the sides that would be listed: I would think that any side associated with use of the drug and which occurs with some frequency would be listed. With all that's been written and all the people treating I'd expect something would have been written somewhere alerting patients that if they experience new and/or different liver pain while on TX it could well be from the liver restructuring itself or something like that. I can't find a word that even hints at this.
You wrote:...URQ pain when a liver is healing is something I have discussed with my doctor in the past, remodeling the liver, which of course, is a change from what was considered "normal" before eradication.
Others too have said this. My liver transplant surgeon disagrees - he really doesn't even take the idea seriously. So, your doctor says yes, Kalio's says yes, NYgirl's says yes and mine says no and a Gastro I spoke with says no, although not as dismissively as does my surgeon. Hey, it seems like people want to believe it and I can't see that it does them any harm. Maybe that's why the docs say that stuff - it placates their patients or gives them hope and enthusiasm. That's certainly not a malevolent motive. I'd just like one of them to give permission to have their name posted as an expert who truly believes the restructuring theory but I suspect that no one will. I guess it's a possible scenario but I don't have a scintilla of evidence in support of it aside from "my doctor said" and I've been to a whole lot of liver doctors and unfortunately not all of them know what they're talking about. So I'll wait for some published information by a reliable source before I'll join that camp. Thanks for your input. Mike
As to the sides that would be listed: I would think that any side associated with use of the drug and which occurs with some frequency would be listed. With all that's been written and all the people treating I'd expect something would have been written somewhere alerting patients that if they experience new and/or different liver pain while on TX it could well be from the liver restructuring itself or something like that. I can't find a word that even hints at this.
You wrote:...URQ pain when a liver is healing is something I have discussed with my doctor in the past, remodeling the liver, which of course, is a change from what was considered "normal" before eradication.
Others too have said this. My liver transplant surgeon disagrees - he really doesn't even take the idea seriously. So, your doctor says yes, Kalio's says yes, NYgirl's says yes and mine says no and a Gastro I spoke with says no, although not as dismissively as does my surgeon. Hey, it seems like people want to believe it and I can't see that it does them any harm. Maybe that's why the docs say that stuff - it placates their patients or gives them hope and enthusiasm. That's certainly not a malevolent motive. I'd just like one of them to give permission to have their name posted as an expert who truly believes the restructuring theory but I suspect that no one will. I guess it's a possible scenario but I don't have a scintilla of evidence in support of it aside from "my doctor said" and I've been to a whole lot of liver doctors and unfortunately not all of them know what they're talking about. So I'll wait for some published information by a reliable source before I'll join that camp. Thanks for your input. Mike
What I thought was liver pain for 9 years turned out to be colon pain from spastic colon/irritable bowel syndrome.
Seriously, check it out. Try some peppermint tea and see what happens. They got me on Bentyl, now. My 'liver' pain is gone.
Seriously, check it out. Try some peppermint tea and see what happens. They got me on Bentyl, now. My 'liver' pain is gone.
I don't think many drug companies would list URQ pain as a side effect unless it can be proven to be a RESULT OF THE DRUGS themselves, and not some other function. URQ pain when a liver is healing is something I have discussed with my doctor in the past, remodeling the liver, which of course, is a change from what was considered "normal" before eradication.
And, I seem to remember threads in here from people who were on SOC and had similar pains, but farther down the treatment road, so it could very well be that it also depends on the rapidity of eradication and removal of inflammation. IIRC, in those cases, the pain did subside fairly quickly (in terms of total duration).
On another board, someone commented last year that the rapid normalization of liver functions while on 950 was a dog bites man story. I disagreed. They showed that the improvement was much more rapid than SOC, which led to the question of whether or not IFN was responsible for healing the liver and lowering ALT's, or if it was the removal of the virus. It could be that by current definitions, if IFN is considered anti-fibrotic, then 950 should be also.
And, I seem to remember threads in here from people who were on SOC and had similar pains, but farther down the treatment road, so it could very well be that it also depends on the rapidity of eradication and removal of inflammation. IIRC, in those cases, the pain did subside fairly quickly (in terms of total duration).
On another board, someone commented last year that the rapid normalization of liver functions while on 950 was a dog bites man story. I disagreed. They showed that the improvement was much more rapid than SOC, which led to the question of whether or not IFN was responsible for healing the liver and lowering ALT's, or if it was the removal of the virus. It could be that by current definitions, if IFN is considered anti-fibrotic, then 950 should be also.
I mentioned the brain fog to the dr. He thought nothing of it. He said it was a sx of the inf. I went to the shrink who asked why my husband drove me to the appt. I told him that sometimes I don't feel safe to drive. I KNOW when though. I told him about the brain fog, anxiety, sleep, depression etc. He gave me Lunesta to sleep and Provigil to be more alert. Just what I need to me MORE alert and anxious. So much for these dr's. He didn't want to change my Prozac and didn't give me anything for anxiety. John was SO MAD he called him up and said she NEEDS something for anxiety, danm it! So he told him to have the pharm call him...more on quality of care in a thread I am going to write when the brain fog wears off a bit.
BTW NO colonoscopy!
BTW NO colonoscopy!
Again, most people are not aware that once you are diagnosed with encepholopathy you are no longer able to drive and paperwork is filed with the DMV. As a matter of fact, many illnesses cause this filing upon dianosis and people aren't aware of it. It is a good thing to be aware of ahead of time as it will dramatically change your life and your level of freedom your ability to go to work, etc. and forewarned is forearmed.
We all have regular bloodwork and if in fact it is a problem the doctor will alert you I would imagine.
It is not easy to get it rescinded even if the doctor ok's you you have to deal with the DMV and their regulations and system even if your doctor says you are ok now doesn't necessarily mean the DMV will agree so peope should check it out and check with their local DMV if they think the diagnosis is a possibility.
We all have regular bloodwork and if in fact it is a problem the doctor will alert you I would imagine.
It is not easy to get it rescinded even if the doctor ok's you you have to deal with the DMV and their regulations and system even if your doctor says you are ok now doesn't necessarily mean the DMV will agree so peope should check it out and check with their local DMV if they think the diagnosis is a possibility.
P.S. I hate a laptop I"M always double clicking on that little pad and Dell hasn't sent my mouse, sorry folks.
Then I am sorry I misunderstood you, the "be careful" and "if dx'd" and charted" took me in a different direction, either she has it and it will be charted or she doesn't, but my only problem is that whatever a person has that slows reaction time, and can cause cofusion, may cause some people not to reveal this problem, especially if a job depends on it, as it did mine, but this problem can be intermittant, and makes them dangerous on the road and kill someone, I have my wife drive me around and sold my harley, but my Hepatologist said I would be tested every 4 wks durring tx, and the lactolose has helped a lot, it may be hard getting my head straight, but it was my wife that told the Dr. I was talking strange because I didn't even realize it.
Then I am sorry I misunderstood you, the "be careful" and "if dx'd" and charted" took me in a different direction, either she has it and it will be charted or she doesn't, but my only problem is that whatever a person has that slows reaction time, and can cause cofusion, may cause some people not to reveal this problem, especially if a job depends on it, as it did mine, but this problem can be intermittant, and makes them dangerous on the road and kill someone, I have my wife drive me around and sold my harley, but my Hepatologist said I would be tested every 4 wks durring tx, and the lactolose has helped a lot, it may be hard getting my head straight, but it was my wife that told the Dr. I was talking strange because I didn't even realize it.
I wasnt saying she shouldn't alert her doctor at all. I was warning her that that can be a consequence of being diagnosed with encephelopathy which is far different than the insinuations in your post that I was telling her to keep it secret. Most people are not aware that having your liscense lifted is a consequence of that diagnosis. I would not ( and did not) tell anyone to withhold information that their doctors need to know.
I agree that scenario is possible but I have no evidence that's what's really going on and do have evidence that suggests the contrary. I see nothing to indicate that changes in either direction - expanding or contracting of the capsule - can cause URQ. The stuff I've read states swelling, distention, pressure and so forth. And, I do believe that, in light of the many people who've treated and cleared, that if your theory is correct there would be something written somewhere mentioning this and particularly in the side effect profile of the drugs. But again, this is merely speculation and I have no firm evidence you aren't correct aside from the lack of evidence that you are.
I am not trying to be picky here but since we're both searching for the truth (although it doesn't really impact either argument) allow me to make an observation as I think you'll be interested:
You said "The swelling *is* caused by the virus infecting the liver cells, so when the virus is removed from the scenario it would certainly stand to reason that its byproduct (i.e. swelling) would also start to subside." This isn't really settled as far as I know. There is a recent article that states that the virus itself may not be cytopathic but rather the host's immune response to the virus.
Bantel et al.
describe the correlation between the degree of
inflammation of the liver and the number of apoptotic
cells as measured by detection of activated
caspases, including caspase-3, a hallmark of Fas-
FasL activation [86]. Moreover, recent in vitro
data from our group show that 0.8%
I am not trying to be picky here but since we're both searching for the truth (although it doesn't really impact either argument) allow me to make an observation as I think you'll be interested:
You said "The swelling *is* caused by the virus infecting the liver cells, so when the virus is removed from the scenario it would certainly stand to reason that its byproduct (i.e. swelling) would also start to subside." This isn't really settled as far as I know. There is a recent article that states that the virus itself may not be cytopathic but rather the host's immune response to the virus.
Bantel et al.
describe the correlation between the degree of
inflammation of the liver and the number of apoptotic
cells as measured by detection of activated
caspases, including caspase-3, a hallmark of Fas-
FasL activation [86]. Moreover, recent in vitro
data from our group show that 0.8%
You are only restricted from driving until the encephelopathy is absolutely controlled, of course if a Dr. feels the problem is bad enough, heck with all the other people and kids in and out of the car, keep the condition secret, dont tell the Doc you had a seizure either, they may not let you drive, and if you're diabetic and become disorientated don't say a word, of course all these symptoms can be controlled with proper medication, but sure don't want to be inconvenienced. Not to mention that the root problem of encephelopathy is the free protien running through the body if not treated may cause kidney problems. I just hope she just absent minded and don't have it.
What did he say about the colonoscopy? I wonder if him saying no to the CT scan is due to the limited testing ou posted about the other day..
LOL Goofy you are such a goof.
I didn't, but then again my headache has my attention at the moment.
Hope you are having a good one.
I didn't, but then again my headache has my attention at the moment.
Hope you are having a good one.
I CAN FEEL IT! LOL
I just returned from the GI. I had URQ pain from a bile duct obstruction before tx. It was repaired and the pain went away. Now at week 17, I get the pains again. Annoying, but bearable. My Alkaline Photatease(sp ?) are going high a bit. The dr. ordered an ultrasound to check for another blockage. I tried to get a CT scan to check for liver damage. He wouldn't do it. (I will post more on this later) He told me that if I do have URQ pain after the Ultrasound, he WILL do a CT scan. Power of suggestion???? How many of you think I'm going to continue having this pain?
I just returned from the GI. I had URQ pain from a bile duct obstruction before tx. It was repaired and the pain went away. Now at week 17, I get the pains again. Annoying, but bearable. My Alkaline Photatease(sp ?) are going high a bit. The dr. ordered an ultrasound to check for another blockage. I tried to get a CT scan to check for liver damage. He wouldn't do it. (I will post more on this later) He told me that if I do have URQ pain after the Ultrasound, he WILL do a CT scan. Power of suggestion???? How many of you think I'm going to continue having this pain?
How many of you got subtle liver pangs while reading this thread? The powers of suggestion at work....
I don't think that her liver is more inflamed. My feeling is that the liver doesn't have nerves and so doesn't feel pain. The capsule does and liver swelling exerts pressure against the lining. The liver doesn't just automatically shrink when ALT declines and even if it did I doubt that the sudden decrease in pressure would cause anything more than a very temporary sensation. And that would diasppear quickly and the relief would be anyting but pain. But that's just conjecture on my part. We just disagree on this and though your theory sounds reasonable don't you believe that there should be some mention of this in some literature somewhere? If you can find anything to support this idea I'd be extremely interested and grateful. I have no investment in being right - I have been wrong so many times already that one more time won't matter. I like to know the truth so if you can help me find it please do so. I am being quite sincere about this - I just want to know what's really going on with liver pain. By the way, I don't have any right now but I didn't when my ALT was in the 300s either. Mike
The references to distension of the liver causing pain is for patients with an active infection. And although pln has not cleared the virus yet, she is probably well on her way to not being actively infected (at least for now). Her ALT plummeted from like 118 down to 26 in a mere two weeks. ALT numbers usually correspond on some level to inflammation. I can easily believe that a liver that has been chronically inflamed for 20+ years (i.e. pln's time of infection), might start to experience some healing pangs associated with dramatically reduced viral load and a commencement of the healing process. Plus, to my knowledge there's simply no reason to believe the liver would actually be more inflamed during treatment than before treatment while the virus is still running free. If you know of a reference that states this is true, please post it I'd like to learn about it.
IFN is an antifibrotic, and VX950 (which she is probably on) + Peg + riba is a very powerful antiviral cocktail. It would stand to reason that if you very suddenly and rapidly knocked the virus down, the liver should start to heal. Plus obviously the inflammatory effects of hepatitis C would be curtailed and even eliminated with sufficient viral clearance (which again is likely due to the likelihood of her being on VX950 along with her low starting VL of ~205,000 IU/ml). So I think there's good reason to suspect her liver pangs may very well be from the liver restructuring itself after having the "viral foot" suddenly removed from it for the first time in over two decades.
IFN is an antifibrotic, and VX950 (which she is probably on) + Peg + riba is a very powerful antiviral cocktail. It would stand to reason that if you very suddenly and rapidly knocked the virus down, the liver should start to heal. Plus obviously the inflammatory effects of hepatitis C would be curtailed and even eliminated with sufficient viral clearance (which again is likely due to the likelihood of her being on VX950 along with her low starting VL of ~205,000 IU/ml). So I think there's good reason to suspect her liver pangs may very well be from the liver restructuring itself after having the "viral foot" suddenly removed from it for the first time in over two decades.
I posted on another thread earlier, I feel so good, the last two days I've actually felt like myself, now whether this is good or bad who know but I'll settle, its so nice to feel like me, I go back the 12th to see about viral load I'll know more then, I don't want to have them mindset that because I feel good its not working, but I will feel better once I know forsure. How are you doing?
I am taking 3 mg Prograf (FK or Tacrolimus). I was down to 2 mg every other day (decreased from 2 per day in late April 2006) and that dose resulted in an elevation in my enzymes which I thought was rejection. It wasn't rejection - I think anyway. I have labs drawn weekly and Monday's labs are the first set with normal enzymes since 5/19/06 - they're high normal ALT 57 with upper normal 60 per Quest Labs) but ALT was 342 in June so it's getting better. Thanks for asking. How are you doing these days? Mike
Mike, do they have you on alot of anti rejection meds? Just wondering, I always thought with transplant would be an enormous amount of medication.
Take Care!
Diana
Take Care!
Diana
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