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.
"From:http://janis7hepc.com/Symptoms.htm#digestive%20problems
Many Hepatitis C patients feel a variety of abdominal pains and discomfort, but unfortunately too often these pains are dismissed as having nothing to do with chronic liver disease. This is because abdominal organs are not responsive to many things what would normally elicit severe pain. The pain fibers in the large interior organs, such as the liver , are usually sensitive only to stretching or increased wall tensions, which is what happens as the liver becomes inflamed. About 20 percent of patients complain of pain over the liver area, in the right upper side of the abdomen just beneath the ribs. Some experts suspects this could be Referred pain caused by inflammation and swelling of the covering of the liver. This pain also may occur in the right shoulder or to the back between the shoulder blades.
Liver pain:
Liver pain (right upper quadrant) is due to the distention of the
liver capsule which has pain receptors. Rapid increases in liver
size from inflammation (viral hepatitis or alcohol induced) or a
tumor are the most common causes of liver pain. When the liver
becomes cirrhotic, specific liver pain is rarely the cause of right upper quadrant complaints."
When I checked for side effect profile of TX every conceivable side was listed for Peg-Intron and Pegasys including stomach pain but, interestingly, nothing about RUQ pain or liver pain or liver discomfort. Everything I can find states that liver pain is the result of swelling or distention and not from a decrease in swelling. I think that these drug companies or some doctor somewhere would have made mention of liver pain as a side of TX if there was even a trace of evidence that supports that idea.
Mike
Many Hepatitis C patients feel a variety of abdominal pains and discomfort, but unfortunately too often these pains are dismissed as having nothing to do with chronic liver disease. This is because abdominal organs are not responsive to many things what would normally elicit severe pain. The pain fibers in the large interior organs, such as the liver , are usually sensitive only to stretching or increased wall tensions, which is what happens as the liver becomes inflamed. About 20 percent of patients complain of pain over the liver area, in the right upper side of the abdomen just beneath the ribs. Some experts suspects this could be Referred pain caused by inflammation and swelling of the covering of the liver. This pain also may occur in the right shoulder or to the back between the shoulder blades.
Liver pain:
Liver pain (right upper quadrant) is due to the distention of the
liver capsule which has pain receptors. Rapid increases in liver
size from inflammation (viral hepatitis or alcohol induced) or a
tumor are the most common causes of liver pain. When the liver
becomes cirrhotic, specific liver pain is rarely the cause of right upper quadrant complaints."
When I checked for side effect profile of TX every conceivable side was listed for Peg-Intron and Pegasys including stomach pain but, interestingly, nothing about RUQ pain or liver pain or liver discomfort. Everything I can find states that liver pain is the result of swelling or distention and not from a decrease in swelling. I think that these drug companies or some doctor somewhere would have made mention of liver pain as a side of TX if there was even a trace of evidence that supports that idea.
Mike
Thanks again NY, I am always happy when you answer my post, You are a very strong woman and I really admire your strength. What are you talking about being able to post here one year with svr, If all the new people all luckly you will still be helping us 5 years down the road with your svr. Thanks again.
I was told the same thing by my doctor as NYGirl was. Although liver pain can and is caused when your liver is ailing, it can also cause pain while it is healing. I know Mike made a stink about how ridiulous that suggestion was awhile back that your liver healing can cause pain, so I again brought it up to the doctor and he again said that healing livers do cause pain for some. So I guess it hurts either way, when it is going south and when it is headed towards a healthier status. No gain without pain!
Hang in there Pln, you have had a rough go of it it seems, I hope it eases up for you soon.
NY hows that hand doing? I hope it is healing nicely!
Hang in there Pln, you have had a rough go of it it seems, I hope it eases up for you soon.
NY hows that hand doing? I hope it is healing nicely!
I feel the same as Kalio and NYgirl. I never had liver pain until treatment. And I always thought of it as my liver shrinking from the inflamation. And my platelets were going up to. My doctor said it was a good sign that my liver was improving cause of the platelets going up. He laughed at me cause I thought the platelets were going up cause of the vitamin K I was taking. Which I still believed help me. My platelets hovered around 50-70. Take care, Debi
I had reflux also, Doc has had me on acifex since before tx, I just take one with my morning meds, works great.
I take Aciphex too! It really works. Thanks for posting to me, I was thinking about you and your brain fog (encph..?) and the drugs the dr. gave you. I think I am losing my mind and it is NOT fun. What is the name of the drug your dr. gave you? Is there a test for this, or not? I am going to the dr. today and want to ask about it. Thanks!
Be carful,if you are diagnosed with it and it is written in your chart, you are no longer allowed to drive.
Hey just a quick note cause you guys are the stomach pains crew...if you do happen to take TUMS or something like Malox...make sure you don't take it around the same time as your Riba - or it will HURT WITH THE Riba ABSORPTION.
And even though it sucks...we all need that big time.
Make sure you space it a few hours apart.
Thanks for the tip about putting Mr. Brian on my chart. I monitor myself now, when I drive. I KNOW when I am not safe. That would be just one more thing to keep me from going out--not having a driver's licence!
Thanks!
Thanks!
I just wish someone would cite a source - an article or study or a published opinion - where it suggests that response to TX is sometimes, even rarely, the cause of liver pain. Everything I've ever read states that it's probably caused by inflamation which causes swelling that results in discomfort.
Andrew Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002
Question 1a
What causes the Upper right quadrant pain that so many of us have?
Answer
We think that it may be due to an enlargement of the liver.
Question 1b
Is there anything that can be done to help this pain (Liver)?
Answer
Occasionally some get relief from laying on their left side.
Thomas Shaw-Stiffel, MD
Medical Director,
Living Donor Liver Transplantation
Univ of Pittsburgh
Medical Center - Presbyterian Hospital Center for Liver Diseases
March 2003
Question
What causes the Upper Right Quadrant pain that so many of us with PBC have. I know the liver does not have nerve endings but the pain is very real.
Answer
Many patients with other liver conditions especially hepatitis C complain about this. Perhaps it's due to stretching of the capsule or outer lining of the liver and that might be the case in PBC since most cases of PBC and other cholestatic disorders have an enlarged liver.
I asked my liver transplant surgeon about the idea of the liver retructuring itself causing the pain. He just shook his head and laughed and said "some doctors will say anything - it's from swelling". Can he be wrong? Of course he can. Do I think that he is? I seriously doubt it but if it makes patients feel better it probably is okay to believe it. I just can't find any evidence of that theory anywhere else but "my doctor said" and if I could find something I'd certainly reconsider the idea notwithstanding my surgeon's take on it. Just refer me to a site if there is one.
Mike.
Andrew Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002
Question 1a
What causes the Upper right quadrant pain that so many of us have?
Answer
We think that it may be due to an enlargement of the liver.
Question 1b
Is there anything that can be done to help this pain (Liver)?
Answer
Occasionally some get relief from laying on their left side.
Thomas Shaw-Stiffel, MD
Medical Director,
Living Donor Liver Transplantation
Univ of Pittsburgh
Medical Center - Presbyterian Hospital Center for Liver Diseases
March 2003
Question
What causes the Upper Right Quadrant pain that so many of us with PBC have. I know the liver does not have nerve endings but the pain is very real.
Answer
Many patients with other liver conditions especially hepatitis C complain about this. Perhaps it's due to stretching of the capsule or outer lining of the liver and that might be the case in PBC since most cases of PBC and other cholestatic disorders have an enlarged liver.
I asked my liver transplant surgeon about the idea of the liver retructuring itself causing the pain. He just shook his head and laughed and said "some doctors will say anything - it's from swelling". Can he be wrong? Of course he can. Do I think that he is? I seriously doubt it but if it makes patients feel better it probably is okay to believe it. I just can't find any evidence of that theory anywhere else but "my doctor said" and if I could find something I'd certainly reconsider the idea notwithstanding my surgeon's take on it. Just refer me to a site if there is one.
Mike.
We did site a source, our doctors. People don't really demand studies from their doctors with something like this. The doc says "that pain could be due to your liver healing" you don't say "doc, got a study to prove that?"
Yea, that's what I thought.
I do want to clarify: Nothing I've said was meant to implie or suggest that I believe or my surgeon stated that the "discomfort" that many of us experience pre-TX, during TX or shortly after TX means that TX is not working. I had it before, during and for a short time post TX and I achieved SVR in 2004. So I don't believe that the discomfort means that TX isn't working but rather that the liver is exerting pressure against the capsule due to swelling which does eventually resolve with successful treatment.
Mike
I do want to clarify: Nothing I've said was meant to implie or suggest that I believe or my surgeon stated that the "discomfort" that many of us experience pre-TX, during TX or shortly after TX means that TX is not working. I had it before, during and for a short time post TX and I achieved SVR in 2004. So I don't believe that the discomfort means that TX isn't working but rather that the liver is exerting pressure against the capsule due to swelling which does eventually resolve with successful treatment.
Mike
No we don't say that to our doctors but many of us research what they told us because, believe it or not, they can on rare occasions be wrong. And almost invariably, if they are correct, there is some corroborating evidence in the vast amount of information that can be found on the internet. I haven't been able to find anything that even remotely suggests your doctor's view and I would expect that if it is true there would be something there. Mike
You didn't site a study either, you just posted a cut and paste of a question and answer session. Healing on any part of our bodies is often painful so I don't get what the big deal is. It isn't like it affects tx decisions, it is what it is. Some experience it some don't. My liver never hurt at all until I was half way thru tx. and that is why it came up in a visit.
I DID atually find it mentioned in a paper I read once somewhere along the line but I haven't relocated it. I figure why bother, it is a distinction without a difference.
I DID atually find it mentioned in a paper I read once somewhere along the line but I haven't relocated it. I figure why bother, it is a distinction without a difference.
You are absolutely correct about Tums and Maalox. When I discovered this (on this board) I was SO MAD at my dr. for not telling me. When I did he gave me the other script. Jmjm is an expert on this stuff. He says the P1's are okay, but not the others, I think?
3rd week blood , alt 22, was 26 2nd week, but hbg 9.6 was 10.1 last week when DR lower riba , but I feel good today and yesterday was a good day so I am sure it is starting to come back up, so we will keep on the same dose of riba as of now. thanks PLN
I'ts encelelopathy just a word meaning brain not working exactly right, I take lactalose, and tell him exactly what you said to me about forgetting things and words not coming out right, its caused by protiens loose in the blood going through the brain, lactolose takes it and pulls it into the intestines and goes out when you poop, all laymans terms he can explain it better.
The way I understand it is once your ammonia level is high enough to require laculose you then are no longer allowed to drive any vehicles. With "brain fog" you are, it is considered a symptom of the meds and the meds both have driving warnings on them, whereas a diagnosis of encelelopathy is a condition that requires the doctor to report to the DMV as is done in stroke cases and other illnesses that affect the brain. It is extremely difficult to change that status once the doctor has reported it to DMV.
Pln have you been poking or rubbing you liver,if so hopefully you have had a good magazine... ha ha
when i first started tx i kept pressing on it to see if it was swollen, well I really did it then , i caused it to hurt by messing with it so much, well i was worried and told my doc it hurt to touch my liver , and he told me simply to stop doing it ,...well o.k then....
nygirl-Im so glad to hear this news cause in the beginging of tx i did experience some pain, i mean after i stopped squishin it....
when i first started tx i kept pressing on it to see if it was swollen, well I really did it then , i caused it to hurt by messing with it so much, well i was worried and told my doc it hurt to touch my liver , and he told me simply to stop doing it ,...well o.k then....
nygirl-Im so glad to hear this news cause in the beginging of tx i did experience some pain, i mean after i stopped squishin it....
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