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    Old 11-28-2004, 12:40 AM   #16
    quincy
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    Re: question for Quincy

    Hi butterflytrans,

    Of course pred is a good med. My husband had poison ivy and was on a 10 day taper and it's never come back. I use cortisone inhaler for my asthma.

    There is definitely a perceived connection between pred as first line med for UC and future treatment with other meds. Of those on pred and 5ASA meds at the same time seem to have a lower success rate than those on just 5ASA (both oral and rectal) ...Again, a perceived connection. I'm not the only one who has discussed it either, but it's a hypothesis...maybe in 10 years, that will be studied as well. But, the prednisone prescribing dosages needs to be revisited methinks. It's not good when the "treatment" is worse for some. I don't you and I will get the point across to each other on this one. Maybe your experience in the "field" has biased you....just as it has with many doctors.


    As for my results.....

    My AST/SGOT results this past July were 69 U/L; Alk Phos results were 198 U/L

    One downer is that my cholesterol levels raised in the past year. I have gained 20 pounds and while I'm ecstatic about that, I'm not about the cholesterol. I'm also on Effexor XL 75mg, and there's a combined connection from that which helped in the weight gain, but not the raised levels.

    Finally I'm at a normal weight and another problem. Sigh!

    One good thing.....the creatinine levels are very normal (52 mmol/L)

    How is the p-ANCA test done? Something to enquire with my doc...but since it's not definitive either, why bother? But, it'll be an option at least.

    Thanks for the inside perspective.

    quincy
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    Old 11-28-2004, 07:19 AM   #17
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    Re: question for Quincy

    Hey there,

    Yeah, the prednisone is obviously not a good drug. I myself was on it for a while for something called Minimal Change Glomerulonephropathy, which luckily has ne'er come back (knock on wood). Prednisone dosing in particular conditions have been studied extensively over the years considering it is often one of the only treatments for the so-called auto-immune conditions....for exmaple autoimmune hepatitis. I think it's bad if someone thinks prednisone is a first-line agent for CD or UC. I agree with you. The way things work where I'm from with UC (for example), if someone has a flare you scope them to see where the disease activity is. If it's just rectum you do the 5-ASA enemas. Usually that works and then when the flare is done, you can often keep the patient on weekly enemas. If that doesn't work, you add oral 5-ASA. If that doesn't work you change the 5-ASA enema to a steroid enema. If that doesn't work, then you add oral steroids. If that doesn't work, sometimes an immunomodulator such as imuran is added. If that doesn't work, then the person might need to think about getting surgery done.

    I know you obviously know the treatment for UC very well--I'm just illustrating this to show you how things work up here. Is the order of your regimen around the same?

    In terms of the p-ANCA...it's just a blood test. It's not specific to ulcerative colitis with PSC, but if you have it and you have the symptoms of PSC (biochemically or physically) then it might point towards the diagnosis a bit more. The only reason I am mentioning this is because you said you are against the idea of getting an ERCP (which I personally think you should get....because if you DO have it and you don't get an ERCP and it progresses, it'll be hard to characterize the extent of your disease later on.)

     
    Old 11-28-2004, 08:46 AM   #18
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    Re: question for Quincy

    well, death is a given.....and since there's NO cure, even with a transplant....???!!! Hey, I have being female on my side, but that's not a given for NOT getting anything.

    But, just for the sake of information seeking...what's the treatments where you're from (up here???) (I'm from Canada by the way) and the success to quality of life vs. life length with the disease.

    You see....one can have it for many, many years, quietly with no symptoms, but as soon as the ERCP is done that can trigger it into very quick symptoms....so, there really is a rock and a hard place mentality for patients (and docs I guess) with PSC.

    quincy
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    Old 11-28-2004, 12:13 PM   #19
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    Re: question for Quincy

    I get the impression that the risk of ERCP "accelerating PSC" is very exaggerated in your mind. ERCP has been known to cause pancreatitis as the most common adverse event, but the risk of it is the same risk of perfing during a colonoscopy, which is between 1 in a 1000 and 1 in 2000.

    The other thing is, Internal Medicine isn't totally about "curing" conditions. It's about preventing things from getting worse, managing and minimizing distressing symptoms in patients, and overall, to improve quality of life. There are things such as stenting and other manipulations (myotomy) which can be done to prevent things like cholangitis and obstructive jaundice which are not only life-threatening, but very uncomfortable conditions.

    It's also a nice thing to be able to see the extent of your PSC (whether you even have it) to get a baseline measure of the extent of your disease and how fast it could progress.

    The issue here is your concern with ERCP, which I can totally understand. It's obviously not the most fun thing to have done. Out of curiosity, did you have a friend who underwent the procedure and had an acceleration of his/her symptoms? Or did you kind of hear this as an aside? You have to remember that the horror stories of any procedure are the ones that are more publicized. I suspect this is the information you've been hearing. With the 100s of ERCPs I have been around, and there was ONE case of biochemical pancreatitis which resolved within a day.

    Last edited by butterflytrans; 11-28-2004 at 12:15 PM.

     
    Old 11-28-2004, 01:11 PM   #20
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    Re: question for Quincy

    Hey,
    I want to put my 2cents in here. As you know quincy --I read most posts on the Bowel boards and this discussion is very interesting!!!
    I have has a ERCP and had I knew the stats about just getting inflammation --- I would not have had it done because I had no problem except a benign pancreatic mass-- still there after 11 years.

    As you both may know "Doctors are the third leading cause of Deaths in the US--- 250,000 yearly" JAMA article. Only heart and cancer deaths are higher. So, it pays to be proactive and educated about your conditions!!!

    God Bless---Harry

    Last edited by Harry; 11-28-2004 at 03:09 PM.

     
    Old 11-28-2004, 02:36 PM   #21
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    Re: question for Quincy

    Yeah, that article was very shocking when it came out. Though upon closer inspection, there was a lot wrong with the article. They never delineated the health condition for the people who were supposedly dying due to iatrogenic (doctor induced) causes. The reason I'm saying this is because a secondary review of the article showed that a lot of the patients who were in the studies were already very sick to begin with. It just so happened that the patients died in the hospital under a doctor's care, so the death was noted to be iatrogenic. Deaths due to medical mistakes happen, I'm not denying that, but that article was quite unfair in the way it portrayed the medical field.

    Anyway, harry, I have a question for you. Why did you get the ERCP done in the first place? Were you having a lot of pain or something? Or did they find the mass on a routine imaging study or something? I can totally see how in retrospect you wouldn't have wanted the ERCP because you know the mass in your pancreas is benign, but I don't blame anyone for doing an ERCP if they knew the pass was present but didn't know what it was. Pancreatic masses are quite often malignant, and not only that, they're very aggressive. Along with anaplastic thyroid cancer, ovarian cancer and lung cancer, pancreatic cancer is one of the most deadly, aggressive cancers known to mankind!

    However, I am very glad that the ERCP was negative for you. You wrote PRCP, was that a typo, or is it something different than ERCP?

     
    Old 11-28-2004, 08:28 PM   #22
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    Re: question for Quincy

    Hello again....

    If my liver enzymes spiked or increased.....then the testing process could be a consideration, but not until that time and not necessarily the ERCP. My doc isn't concerned at this time, so I'm not either.

    I agree that being proactive in care and educated is necessary as Harry states. It gives quality of life, contrary to some medical thinking.

    I've endured enough in my lifetime with chronic health problems some requiring surgeries. I'm from lousy "stock", and have chosen to not have children because of it. I've dealt and paid both physically and emotionally.

    I have enough to deal with, and I'm sure I'll be in for more as I age. PSC is a possibility, but not a probability. It's really not an issue at this time.

    If the equation changes....then I'll reconsider the options available.

    I read it in an article from a journal written by a doctor . It balanced the pros and cons of testing. He stated that the testing process has to change because the disease usually isn't caught in the earliest stages anyway, and when it has been....the ERCP accellerated the progress of the disease or triggered it to happen when it might not have for many many years in the future. Of course, I threw away most of that info, and thought I kept that one....I've been looking and haven't found it yet.

    Since PSC is mostly in males, I believe that for females there are other circumstances in causing elevated liver enzymes...pregnancy for one , maybe even HRT's?

    This doctor also said that treatments for PSC aren't good enough, nor are the testing procedures, but I don't know how much has changed since 1997.

    That perspective may be just one....but it could be valuable insight where others have only followed the most popular belief/philosophy even if it's not the best. It's like the "Emperor's New Clothes".....all it takes is one to have others see!

    I appreciate your concern, and if anything comes up and you're still around I'll ask more questions!!

    There's still a lot to be said for "gut" instinct....no matter the popular thought.

    Thanks again,
    quincy
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    Old 11-28-2004, 08:31 PM   #23
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    Re: question for Quincy

    Harry definitely has good "gut" instinct! and I'm sure he has experience to prove it.

    Thanks Harry for your support!

    It's good to hear your pancreatic growth is benign.

    Best to you,
    quincy
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    Old 11-28-2004, 10:26 PM   #24
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    Lightbulb Re: question for Quincy

    butterfly--- That report is still controversial and I think the report numbers are probably too low even when written in 2000. With the recent problems with drugs as well as drug interaction and companie's ethics coming to light-- I think the Medical Profession is treated more than fairly.

    The CT was done looking at my adrenal glands for problems. I corrected the ERCP in my post. I have hyperplasia of my adrenal glands resulting in hyperadosterornism-- meaning I lose too much potassium.

    The CT scan(done in 1993) showed the low density mass of my pancreus. And, also a slight aorta anurisum. A needle biopsy of the mass was done but my Gastro Doctor wanted to and did an ERCP --- and then wanted me to have surgery. My surgeon and I agreed that if I was not having problems then leave it alone. All blood work was OK and digestion normal. It is checked annually and has not changed.

    In 1993 there was not the worldwide web like it is today. WE all can find lots of information now and alot more aware of Medical problems and are just more informed.

    I have been married for 49 years. So, as quincy said --I do have alot of experiences that sure helps the instincts---

    Harry

    Last edited by Harry; 11-28-2004 at 10:32 PM. Reason: Typs

     
    Old 11-29-2004, 03:19 PM   #25
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    Re: question for Quincy

    49 years?!!! Nice...you've been married way longer than I've been alive!! *heehee* Just teasin' Harry.

    Sorry quincy, I didn't realize that your liver enzymes aren't raised. For some reason I thought they were up. Oh yeah...I wouldn't even IMAGE you for PSC if your liver enzymes weren't raised.

    For harry: you have primary hyperaldosteronism...i.e. Conn's syndrome. There is much more going on in your body than just losing potassium. Potassium loss is actually more of a side-effect of the process which is going on in your body. Did you get your adrenals out, or are you treated with medications to suppress your adrenals, or neither?

    About the pancreatic mass: how did they get the needle biopsy of the mass in the first place? Was it just ultrasound guided? Sometimes the needle biopsy of a mass doesn't get the best sample, so it is often advantageous to get an ERCP after that. So don't fault your doctor for that. Especially considering he was following up on a pancreatic mass. You should understand how lucky you are that the mass was benign, because pancreatic masses usually aren't. I do see YOUR point though about not wanting to get the mass out if it is benign.

     
    Old 11-29-2004, 04:58 PM   #26
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    Re: question for Quincy

    Hi butterflytrans (interesting name, would you mind sharing how and why you chose it?)


    "My AST/SGOT results this past July were 69 U/L; Alk Phos results were 198 U/L"


    I guess you missed that part. They're constantly elevated, which is my "norm" for the past 7 years. Once they increase or spike, time to take a closer evaluation I suppose.

    Question: What exactly would LDH show and how would it pertain to UC?

    Thanks once again.

    quincy
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    Old 11-29-2004, 08:26 PM   #27
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    Re: question for Quincy

    Quote:
    Originally Posted by quincy
    Hi butterflytrans (interesting name, would you mind sharing how and why you chose it?)


    "My AST/SGOT results this past July were 69 U/L; Alk Phos results were 198 U/L"


    I guess you missed that part. They're constantly elevated, which is my "norm" for the past 7 years. Once they increase or spike, time to take a closer evaluation I suppose.

    Question: What exactly would LDH show and how would it pertain to UC?

    Thanks once again.

    quincy
    Okay, so your alk phos is a bit up, but still nothing to sing and dance about; however, the fact that they have been raised for a long time does raise a BIT of an issue. It is likely you have some chronic, smouldering cholangitis. It's a tough call.

    As for the LDH; it is not a specific test. It is often used as an indicator of hemolysis, and is also raised in things like testicular cancer (which I have a feeling doesn't apply to you ), and can also be indicative of cancer metastases to the liver. On the other hand, it can also be raised in a general state of inflammation (i.e. an acute phase reactant) which you might have considering that it is possible you have some chronic cholangitis.

     
    Old 11-29-2004, 08:54 PM   #28
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    Re: question for Quincy

    I see a lot of PSC and ERCP in your posts. What are they? I'm assuming one is a disease (PSC) and the other is some kind of a test?? I'm sure I could go back and read and find it but I'm too lazy tonight!! Back to the pred, sorry Butterfly but it IS overprescribed here. When people here with UC or CD or even some with arthritis are in a flare the first thing that is done is add pred. I know quite a few other people with these and that happens with them also.
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    Old 11-30-2004, 12:45 AM   #29
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    Re: question for Quincy

    Hi twisten....i'm going to leave it to butterflytrans to explain this one since I really don't have the experience with it as he has.





    butterflytrans.....my LDH (184) is middle of the normal range (118 - 242). But, I have blood tests every 6 months for sure, and sometimes more depending. So, in your perspective...good or not good?

    Thanks again,
    quincy
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    Old 11-30-2004, 02:19 PM   #30
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    Re: question for Quincy

    Hey there quincy...the LDH that you have is totally non-specific. In other words, it doesn't point towards anything bad!

    For twisten:
    PSC stands for Primary Sclerosing Cholangitis. It is a disease where there is chronic inflammation in the bile ducts that are inside and outside the liver. These are the pipes the bile runs through. People normally associate bile with the gall bladder, but the truth is, the gall bladder only stores the bile--the liver actually makes it. In PSC, these bile ducts stay inflamed and eventually harden and start to block off (similar to what happens in one's arteries when someone has heart disease). Blocking off of these bile vessels leads to congestion within the liver and causes liver damage. PSC is often associated with Ulcerative Colitis, and it seen in men about three times as much as women.

    ERCP is a term that stands for Endoscopic Retrograde Cholangiopancreaticoduodenography. A camera is put down the esophagus, in to the stomach, then in to the first part of the small intestine (the duodenum) and is then put through the duct through which bile and pancreatic secretions are pumped in. Through this whole dye can be injected backwards in to the biliary tree (hence the term retrograde) and you can visualize the bile ducts/pancreatic ducts and so on. You can also use ERCP to visualize gallstones and even to help remove them!

     
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