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

[sfbaygirl]

There are no dumb questions! Liver pain has been a problem for some here. I am sure others will pipe in.

The liver doesn't actually feel pain, it is the surrounding organs and tissue that feel the pain when the liver is swollen. I have RQP, right quadrant pain, sometimes. Mostly before tx, when I had a bile duct obstruction. It went away when I had a stent put in. Lately I have been feeling it again. It isn't bad, just annoying.

Have you talked to your dr? Mine said to let him know if I was feeling that pain again.

Maybe your liver is revolting from trying to get rid of the virus.  Also have you had any stomach problems? sometimes I get pain from reflux and it feels like pain in my liver.

[NYgirl]

Actually you know, our livers really don't have any nerves inside to FEEL any pain.

The lining on the outside does and sometimes as it shrinks (from the inflammation getting BETTER) it causes pain.  Like a contraction sort of.

So generally when my "liver" used to hurt - I took it as a GREAT THING!  Anytime you can turn something like this into the positive and realize that treatment is WORKING...it makes the pain actually so so good :)

[pln]

LOL,,Thank you both, That is how I am going to be looking at it now treatment is working! I hope to feel this pain all day now!lol

[FlGuy]

I saw the question, but not the answer. How's that injured digit of yours?  People still a little freaked out at the job?

[NYgirl]

lol isn't it funny how when you look at it that way it changes it all?

the URQ (upper right quadrant) pain is pretty common...but when it happens to me and I think of those creepy little viruses DYING (sort of like packmen being eaten up) and think of the inflammation going DOWN...it makes me feel so cool - like Xena the warrior princess ;)

So next time...picture it all in some bizarre way like that and it will help you smile - and that is the ticket!

Treatment DOES work and we CAN be cured - we have to remember whatever aggrevation it takes and whatever pain...just to be able to POST in here I AM ONE YEAR SVR...that is worth EVERYTHING!

:)

[pln]

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.

[Kalio1]

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!

[tulsatime]

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 (inflammation). 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

[mycoldfeet]

I had reflux also, Doc has had me on acifex since before tx, I just take one with my morning meds, works great.

[sfbaygirl]

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!

[Kalio1]

Be carful,if you are diagnosed with it and it is written in your chart, you are no longer allowed to drive.

[NYgirl]

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.

[sfbaygirl]

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!

[mikesimon]

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 (inflammation) 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.

[Kalio1]

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?"

[mikesimon]

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

[mikesimon]

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

[Kalio1]

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.

[sfbaygirl]

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?

[pln]

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

[mycoldfeet]

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.

[Kalio1]

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.

[goldyn]

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....

[NYgirl]

LOL don't I know that...poke poke poke wow it HURTS LOL

I think we've ALL gone through something like that in the beginning hahahahaha.  I sure did.

[sfbaygirl]

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!

[mikesimon]

"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

[Gonna beat it]

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

[mikesimon]

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

[Gonna beat it]

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?

[mremeet]

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.

[Kalio1]

You feeling better I hope?

[mikesimon]

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

[GoofyDad]

How many of you got subtle liver pangs while reading this thread? The powers of suggestion at work....

[sfbaygirl]

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?

[Kalio1]

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.

[Kalio1]

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..

[GrandOak]

I hope you're not wishing a "good one" as in headache on poor ol' Goofy ;-P

[mremeet]

Mike, re our discussion, I appreciate your input and I certainly can

[mycoldfeet]

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.

[mikesimon]

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%

[Kalio1]

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.

[mycoldfeet]

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.

[mycoldfeet]

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.

[mycoldfeet]

P.S. I hate a laptop I"M always double clicking on that little pad and Dell hasn't sent my mouse, sorry folks.

[Kalio1]

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.

[couldn't think of a nickname]

From what I have been told, and heard from others experience in here, the pain could be caused by the liver "remodeling". The capsule around the liver can get inflamed, leading to the pain or discomfort you are feeling. My doc has told me this (I have never treated). There are some on conventional treatment that I have noticed, say the feel the same thing around week 6 or later.
I don't remember how far you are into treatment, but in prior studies, VX-950 did reduce inflammation as noted by ALT levels at quite a fast rate, faster and better than SOC. Once the inflammation is down, it can start to heal. Hopefully that is what is happening. I would definitely mention it though.

[couldn't think of a nickname]

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.

[AK - Hepper]

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.

[mikesimon]

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

[Kalio1]

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.