Ursodiol

Has anyone been taking Ursodiol/Actigall?? (Same drug, two names)
My doctor has me on it but I don't have a gallbladder and no stones.(removed in 85', I was dx in 2001 with hep C) All the research I do tells me its for gall stones. I am geno type 1, have had it for 30 years and choose not to do tx.

[cigaso]

I am curious. Why have you not taken any tx? Have you had a bx?

[honey1616]

I have not used that drug but looking it up,,,See that it is definitely for gallstones.  What reason did your dr give to you for prescribing this for you?

[ellissg]

I just read that Actigall is no longer used for Gallbladder problems, but is used to treat Cirrhosis. Anyone else have further information?

[TnHepGuy_]

After I failed mono interferon back in 1993, my gastro asked if I wanted to try going on Actigall to see if it would lower my LFT's (knowing that it doesn't act against the virus itself). I agreed and tried it for three months, with no effect on the LFT levels.

While it's possible you have been put on Actigall for similar reasons, be sure to ask your doctor exactly why you are taking it. You should never be left in the dark about anything as important as to the reason(s) you are on any particular medication.


TnHepGuy

[bzzracer]

to help thin bile. prior and post liver transplant med. prior due to excess bilirubin, post to ease the transition of acceptance and reduce itching. the latter for 2 months, 400mg daily.

[Moeymitt]

Hi, I have not taken tx because when I had my liver biopsy (3 years ago) my doctor said he would not recommend tx at that time
No Fibrosis, or cirrosis (cirrhosis). Also I am 1a and he said it was very difficult to treat.

[TnHepGuy_]

Current protocol is for any chronic Hep C patient to receive a bx every three years (or less if called for) to monitor the health of the liver. It would be to your benefit to have one done soon to gauge what the current status of the health of your liver.

As far as geno 1a being "very difficult to treat", the success rate (to begin with) for someone in your shoes (assuming you still have little-to-no- liver damage) would be (depending on your age) in the 50-60% range. And to me, those odds are pretty darn good - especially knowing that every year that you don't treat, those same odds continue to diminish and the chances of your liver being damaged continue to rise. And then there are all the other non-hepatic manifestations that arise as a result of having a virus replicating by the billions in your body constantly.

My question for any doctor who advocates the "watchful waiting" approach is: what <b>exactly</b> are we waiting for? my liver damage to increase? my SVR odds to continue downward? other Hep C-related conditions to arise? Or, are we waiting for the so-called "something better" to come along? That's one that doctors seem to throw out rather often. And you know why that is? Because they have no idea when, how, where or if that "something better" will ever arive - and it's easy to dangle a carrot out in front of patients and tell them that with the current tx "the odds aren't good", or "the medications are too tough" or, you-name-it. I've been hearing this same set of garbage now since I failed tx 12 years ago. And you know what? The better drugs are already here. My odds (as a geno 1a) back then were less than 10%. In taking the new combo tx, I started out with them closer to the 60% range. Those are the kind of odds I can live with - very comfortably. And my liver damge was very mild and hadn't progressed between 1992 and 2003. What did change in that time frame was that I got older.  And with age, my chances of reaching SVR were continuing to go down. And my odds of liver damage were continuing to go up. So, when a doctor tells you that you should wait for something "easier/more tolerable" than the current medications to come along, ask him "just how long do you suggest that I wait for the pharmaceutical companies to perfect this drug and for the FDA to approve it?" And also ask if he can guarantee that this drug will make it through every tough hurdle of the research, trial and approval stages - and just how long do you think all of that will take? Be sure to ask if he knows what the new SVR odds for this approved medication will be for geno 1a's. And ask him about your liver in the meantime - should you just do some more "watchful waiting", perhaps? And ask him about all the studies that show declining odds with age - and increased liver damage over time - and the non-liner aspect of that damage (meaning that it can go from slow progession to fast progression without notice). And be sure to quiz him on his knowledge of all the extra-hepatic maifestations that are associated (and being further discovered every day) with Hep C, and what having the virus that much longer means in those terms? And ask him if he thinks that this new drug will replace interferon and ribavirn (since these are the current "non-easy, non-tolerable" drugs), or will these two drugs still be part of any tx that happens to show up (as all the current researchers say)? Ask him about Amantadine, Zadaxin and a host of other drugs (used in combo with the current tx) that have never lived up to their potential. And ask him about the protease inhibitors and how the research on them has been stymied and significantly slowed by this rascally RNA virus.

Back in 1997, I called Dr. Jay Hoffnagle - the lead Hep C research doc at the National Institutes of Health. In that converstaion I asked him about protease inhibitors and what he expected to come from it. He told me he fully expected there to be something ready for FDA approval by 2002-03. Dr. Hoffnagle is truly on the front lines of Hep C research. If someone like him can be so completely off base on Hep C drug research and approvals, what might that say about the average doctor telling his patients to "wait for something better to come along in the next few years"???


TnHepGuy

[twotells]

Moeymitt,
My Genotype was 1b, as tough to treat as they come, and I was clear at 2 1/2 mo post treatment.  I'm not out of the woods yet- still have a 6 mo test to wait for- but I wouldn't be the first type 1 to stay clear.  Even if the virus should return, the tx can extend the life of my liver and myself, and protect the quality of my life by holding off the effects of further liver damage.

TnHepGuy,
I was truly wowed by your argument.  I'm pasting that one into my Hep files for future reference.  Thanks,  Dave

[cuteus]

THAT was just an EXCELLENT expressed point!  I want to copy it and show it to some folks at delphi, may I?

[Califia]

Now THAT was an argument for treatment.  You have exceeded your previous high levels of eloquence, dear sir.   As another oldtimer, a fellow member of the monotherapy pioneer class, I have to agree very strongly with your assessment of current treatment odds.   When pegylated interferons recently appeared on the scene, I was unequivocally ready to treat again.  The jump from 5% to 50% treatment odds, roughly speaking, sounded very attractive indeed.  As for our wishful lusting after protease inhibitors, they, too, are not a walk in the park.   Anyone with friends dealing with HIV knows that quite well.  

The social and economic issues surrounding treatment are really difficult and not going to get any easier.  I worry that we might be the last group of people to have relatively easy access to these drugs before the demographic bulge reaches the snake's neck.   Aging with dignity in this country is hard enough as it is.   To enter one's senior years with a chronic illness guaranteed to diminish one's physical resources at an ever accelerating rate is just not a very pleasant prospect.  Any sacrifices we make during treatment at this point in our lives are a strong investment in our respective futures.   Delayed gratification?  You bet.

Happy birthday to all my fellow St. Patrick's babies!

[TnHepGuy_]

Have at it.

It's terrible to see all these doctors out there tossing out a bunch of BS just because they are either lazy in their Hep C knowledge or completely ignorant of it. Perhaps the most important phrase that can come from a doctor's mouth are the words "I don't know". With those simple words a patient can realize that they are with someone humble enough to NOT give out just any old kind of answer under the sun. Too many times a doctor will give out an answer - some kind of answer - in the hope that the patient won't think that the doctor's knowledge is lacking, and therefore wouldn't be a "good" doctor. Sometimes it can be actual work to look for and find the right answer and maybe the doctor doesn't have or want to put in the amount of time to do it. Maybe the right answer is to refer the patient to a different doc and the doctor isn't humble (or knowledgeable) enough to do it. Or maybe the doctor feels too rushed and just wants to give the patient the insurance-driven amount of visit time - and out the door the problem goes. Or maybe they feel it's best to tell the patient what they believe the patient wants to hear - or what the doctor falsely believes the patient should hear. The list goes on-and-on-and-on.

Its' too easy to just parrot a standard line. The tough part is for a doctor to do the actual work of learning the right answer or being humble enough to say the words "I don't know - I'll try and find out. And if I can't, let's send you to someone who may know".

Implicit in those words are, "I'm caring for you the best way  I can. I'm working with and for you. Your health concern and any future treatment are too important. And, I'm not about to throw you some answer just for the sake of it."


TnHepGuy

[Moeymitt]

good post. I am having another liver biopsy this summer. I thought the reason why my doctor said waiting was an option was because I have had the virus for 30 years symtom free. So, after being dx 3y.o and after the first liver bx. I started to do ALOT of research on my own as I believe all of us did. In all the people I talked to who did tx, 1 cleared,10 feel worse off then before tx. Another gal I just happen to talk with last week cleared but now is 1. Diabetic, 2. has cronic (chronic) fatigue and NO ENERGY (stopped tx 1 year ago) has put on a trememdous amount of weight etc......but feels it is worth it because she is hepc freee!! I am active, 50 years old, run, swim , bike, walk dog, have a business and I am to trade this possibly for something that has a 50% chance of working and then be worse off then before or.....continue to live with this (AST 107, ALT169 as of last friday, I get checked every 3 months). It is still a tuff call and I weight it out in my head each day. You are right, tx at this age would be easier than later and I would hate to wait until I get "sick" and then do tx.  By the way, what about you? You stated you did tx and it didn;t work, did you try again? and, did you have and are you having side effects from tx. I posted a few weeks back for anyone who has cleared who was 1a and got a positive response so you all don't need to do it again. Thanks for all your help. Doing tx is such a personal choice, I sometimes wish it wasn;t.

[honey1616]

I agree with everyone,,,,excellent post!!  I can't tell you how many of your posts,,,I have copied. It has been the greatest back up for me to present to my dr at times.  You cover all aspects to a topic and present it so well...

[TnHepGuy_]

Glad to hear that you will be getting the bx. You will gain good information from having that.

If your doctor did actually tell you that you don't have to tx because you are symptom-free, he is sadly mistaken. There is no correlation of external symptoms to internal disease progression. Think of all the people you have met here who find out they are chronic Hep C, get their first bx and are shocked to find that they have a higher level of liver damage that somehow wouldn't match their perception of "how they feel" overall. The "how I feel" school of Hep C treatment does not take into account the progressive nature and time frame of liver damage (i.e. - studies show that after 20 years of chronic Hep C, the odds of having progressing liver damage keep increasing - at an increasing rate). In other words, as you age and continue to have the virus, the window of staying at the lower stages of liver damage gets smaller and smaller. Add on that SVR odds decrease as the clock ticks, and time is neither a positive factor or indicator in anything related to Hep C. Another question for your doc regarding not treating you until symptoms appear would be: exactly what type of symptoms is he waiting for? external liver-realted ones? internal liver-related ones? non-hepatic-related ones? And if his decision is to wait until something manifestes itself, a question to ask then would be - why? As a doctor, why would you want me to wait until I am in worse shape physically, to only then tell me that now I need to treat??? Perhaps his answer today might be that since you have little-to-no symptoms/damage to "wait for that better treatment". But that's a roll-of-the-dice he's taking on your behalf, since he has absolutley no idea when, how or if that treatment will arrive in time for your needs.

In your last post you mention doing alot of research since being dx. Yet you rely on purely anicdotal evidence when discussing others experiences regarding SVR (eg - "<i>In all the people I talked to who did tx, 1 cleared...</i>"). Your online research must have shown you that actual SVR rates for geno 1's are closer to 60%. Treatment is never an easy decision. Mostly because there is no 100% guarantee of success and also because of the potential negative sx's. But how many 100%'s are out there in life, period? And how many negative sx's from life do we have each and every day?


Thank you for asking how I am. In a nutshell, here's my Hep C history. I gave it to myself in 1984 or 1985. Was diagnosed (geno 1a) in 1992 - bx showing stage 1, grade 1. Tx'ed (and failed) with mono interferon for 7 months in 92-93. Tried various other things over time - all to no avail. Kept seeing my doc, monitoring and testing over time. In 2003 my alpha feta protein went out of normal range for the first time. Monitored and retested that for a while, with it never returning to normal. Decided to do combo tx. Finished 48 weeks of Pegasys and 1,200 riba on January 8th of this year. Was clear at week #12 and stayed that way throughout tx. Will have first post-tx PCR in mid-April, but thankfully my LFT's at week #6 post-tx remained in the normal range (after being elevated for years prior to tx). Had some lousy sx's during tx, but most are lifting away now - some faster than others. Some of my biggest concerns going into making my decision to tx at this point in my life (was 45 when I began), were: 1.) what has this virus done - and continues to do - to my liver and immune system over time. 2.) the effects and toll that it takes on me and my wife - physically and mentally - by having this virus ongoing in my life. 3.) the "unknowns", meaning that there is so little known about this virus and what it may cause over time besides what science currently knows. 4.) time keeps ticking away - and with it the potential to get out from underneath this monster - one that not only corrupts the body, but bears down heavily on the mind with concerns, worry and fear. Whether it be upfront or lurking in the background, Hep C is always there. And it doesn't just go away on it's own.


TnHepGuy

[cuteus]

there is so much missinformation out there that it is quite hard to sort through the bunch to come up with reasonable conclusions. Someone posted on the other forum that she won't treat because a nurse she knows, who is hcv +, decided not to due to the hard time some folks have on tx.
I am not convinced that all the conditions people mentioned post tx are due to the meds. Some symptoms can be so mild, we dismiss them as morning aches or not sleeping well, indigestion, etc.  Many do not get  baseline physicals that include a complete endocrinology, neurologic and cardiac work up( I know I didn't). Why should we? if we don't have serious signs, doctors can't justify the tests.  Then we get symptoms during Tx and go get tests and come back with some condition, how do we really know it was not there before?
Take me, for example. I get a leg pain, go for MRI and get dx with a herniated disc. I could say I did not have it before tx and it must have been the meds, but that would be pure conjecture.  I tell people I got dx with the disc problem during tx and the conclusion is drawed that it is tx related.  How many things happen this way?
Moey, how do you know if these people did not have pre exixting conditions, they can not say for sure,  and the ones who did not clear, how do you know if they are truthful in their compliance with tx and the reason for their failure? I did 72 wks and 50 to 60 % chance at svr is a lot better than 0% for not trying.  I feel no lingering effects that were not there before tx. The point is; you don't know how you will react until you take the meds.  I firmly believe that most of the damage is actually from the lack of intervention in treating the anemia from riba. The oxygen deprived tissue is traumatized for months and docs do nothing because they are still waiting for the magic number before txing.  I was lucky to get my anemia under control early on. Anyone should insist on intervention so as to continue a good quality of life.
There was a study that TNguy linked here on subclinical signs of hep c in the liver. I got my latest blood work today from my NP, and compared it to pre dx copies. My  liver profile was always within "normal" range, but always basically the same reading. This last bloodwork  the alt and ast are still in the normal range but considerably lower; from being in the 20's to now in the 10 to 11.  Normal readings but yet they were elevated for MY normal( I know now) due to hcv. The virus was having its time with my liver, very discreetly.
Sacrificing a yr or a little more so that you don't have to worry about infecting anyone inadvertently is a small price to pay. I can't believe that fear of tx is bigger than fear of liver or other organ failure  for some people.

On a different note: I asked the NP if the practice ( this is the Long Island Jewish Health SYstem research hospital, Dr. Bernstein's unit) had seen many relapses after the 3 month negative pcr and she responded that they are seeing a lot of more relapses, period.  All accross the board of genotypes, even g2.  She is keeping a log of her relapsers, and can't see a relation to level of damage.  Is the virus mutating? Are these patients been truthful about their compliance? Is it hidden virus?  She had not read any studies on residual hcv in the peripheral liver vessels, so we can not assume that our providers are staying on top of things like David said, they don't know and don't have the time to read all that is out there, yet we listen to their advice.
Her comment of a lot of more relapsers especially g2, was disconcerting and just adds to the puzzle of hcv. Some of those did 48 wks instead of 24.  I did not inquired further if the relapses were discovered early post tx, maybe I'll ask next time. I was caught off guard.
HCV; the puzzling epidemic.