He is letting me wean off the prednisone and will replace it with Entocort when I get to 10mg. 30 for a week, 20 the next then 10 the next. But he still wants me to take the Imuran. He feels it is safe and an effective drug to get off the steroids with. He said it has been around for 40 years and has patients on it with no bad side effects for 20 years. He will be doing blood tests along the way to check for effectiveness/side effects that I wouldn't notice.
I asked about the mast cells and he said I do not have the symptoms. He said MC would not have shown and I would have lower right quadrant pain. He said he would do a c-diff test if I wanted but he didn't feel I was having the symptoms. He thinks I just have a very difficult case of MC.
My husband and I felt like it was a reasonable plan.
Pat
My doctor visit today.
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pat,
Well, what he said is logical, and I don't have a problem with it, except possibly this part: "I asked about the mast cells and he said I do not have the symptoms.."
What symptoms? It sounds as though he is thinking that you should have histamine-based symptoms, (itching, sneezing, rash, etc.), and, of course, that does not apply to mast cell responses in the colon. Maybe he is confused about that.
Also, this part bothers me: "He said MC would not have shown and I would have lower right quadrant pain".
Obviously, he is completely unaware of the recently-described type of MC known as mastocytic enterocolitis. All known forms of MC are typically characterized by overlapping markers, so to say that "MC would not have shown", (presumably referring to the lymphocytes of LC, and/or the thickened collagen deposits of CC), is arguably incorrect, also, (besides that fact that he is completely overlooking the possibility of mastocytic enterocolitis). His statement about lower right quadrant pain, would appear to be on target, except that that area is also the site of the greatest concentration of IELs, (the markers of LC). He's dang sure correct about you having a difficult case of MC, though.
I would go for the C. diff test, based simply on the fact that as a group, doctors very often seem to miss the clues on all but the most obvious cases of C. diff. They tend to think of it as a rare problem, and treat it as such.
For the most part, he does indeed seem to be a very good GI doc, but he appears to be completely unfamiliar with mastocytic enterocolitis,
http://72.14.205.104/search?q=cache:AU1 ... cd=6&gl=us
Tex
Well, what he said is logical, and I don't have a problem with it, except possibly this part: "I asked about the mast cells and he said I do not have the symptoms.."
What symptoms? It sounds as though he is thinking that you should have histamine-based symptoms, (itching, sneezing, rash, etc.), and, of course, that does not apply to mast cell responses in the colon. Maybe he is confused about that.
Also, this part bothers me: "He said MC would not have shown and I would have lower right quadrant pain".
Obviously, he is completely unaware of the recently-described type of MC known as mastocytic enterocolitis. All known forms of MC are typically characterized by overlapping markers, so to say that "MC would not have shown", (presumably referring to the lymphocytes of LC, and/or the thickened collagen deposits of CC), is arguably incorrect, also, (besides that fact that he is completely overlooking the possibility of mastocytic enterocolitis). His statement about lower right quadrant pain, would appear to be on target, except that that area is also the site of the greatest concentration of IELs, (the markers of LC). He's dang sure correct about you having a difficult case of MC, though.
I would go for the C. diff test, based simply on the fact that as a group, doctors very often seem to miss the clues on all but the most obvious cases of C. diff. They tend to think of it as a rare problem, and treat it as such.
For the most part, he does indeed seem to be a very good GI doc, but he appears to be completely unfamiliar with mastocytic enterocolitis,
http://72.14.205.104/search?q=cache:AU1 ... cd=6&gl=us
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks all for your kind words.
Tex,
Here is an article on the internet that is exactly what my doctor said about mast cells, except he also said the part about the pain in lower right quad that I don't have. He said that they treat mastocytic enterocolitis with Zyrtec and Claritin (that is also what the article said) and certainly if I had it the Prednisone would have taken care of it.
http://ezinearticles.com/?Mastocytic-En ... &id=967681
I don't know, Tex, but he said he has treated many many cases of MC and mine is just more difficult than most. He said I just have to be patient with the Imuran. I takes 6-8 weeks for it to kick in. I hate it but I have tried the diet (and he wants me to continue on the diet) and many other meds with no results. I am better, just not "normal" yet. I still have hope. And this board gives me that hope! Thank you so much for all your encouraging words and tireless research.
Pat
Tex,
Here is an article on the internet that is exactly what my doctor said about mast cells, except he also said the part about the pain in lower right quad that I don't have. He said that they treat mastocytic enterocolitis with Zyrtec and Claritin (that is also what the article said) and certainly if I had it the Prednisone would have taken care of it.
http://ezinearticles.com/?Mastocytic-En ... &id=967681
I don't know, Tex, but he said he has treated many many cases of MC and mine is just more difficult than most. He said I just have to be patient with the Imuran. I takes 6-8 weeks for it to kick in. I hate it but I have tried the diet (and he wants me to continue on the diet) and many other meds with no results. I am better, just not "normal" yet. I still have hope. And this board gives me that hope! Thank you so much for all your encouraging words and tireless research.
Pat
Hi Pat,
I see what you're saying, and the article you cited is written by Dr. Lewey, (you can track it down by the ezine database file ID number - 967681). Unfortunately, he also seems to be confused about the use of antihistamines for that purpose. Maybe that's part of the reason why he doesn't seem to realize that mastocytic enterocolitis is part of the family of syndromes known as microscopic colitis.
I realize that these guys are highly esteemed doctors, and I'm just a lowly peon, but here's the problem with the good doctors' interpretation of the issue, as I see it:
http://en.wikipedia.org/wiki/Antihistamine
Note that an agonist is defined as a chemical substance capable of activating a receptor to induce a full or partial pharmacological response. That implies that an inverse agonist acts to deactivate a receptor, so that a pharmacological response cannot be induced. What this all means is that the so-called "antihistamines", (in the H1 group), do not in fact modulate the function of the mast cells - instead they modulate the function of the H1 receptors that are present in the tissue of interest. That's a very important distinction, especially in light of the fact that the histamine receptors found in the colon are not type H1, they are type H4. As complex and specific as immune functions are in the human body, I seriously doubt that an inverse agonist designed to target H1 receptors, would have the foggiest idea of what to do about a type H4 receptor. In fact, it would almost surely either completely ignore it, or apply some inappropriate action. Therefore, there is no reason to assume that a type H1 "antagonist" would prevent a type H4 receptor from functioning according to it's normal "programmed" response.
I apologize if I'm not making my point clear, and if anyone sees a flaw in my logic, I wish you would point it out, but it appears to me that the aforementioned doctors are confusing apples with oranges. (Mike - Polly - am I all wet?) I can certainly see how most doctors would try to use H1 "antagonists" to treat a mast cell problem in the colon, because no one knows the true role of H4 histamine receptors, and types H1 and H2 "antagonists" are the only types available to use. Note that type H2 "antagonists" have the same problem as type H1 - they are actually not antagonists, rather, they are inverse agonists, at the H2 receptor. For more information on type H4 receptors, see the table at this site:
http://en.wikipedia.org/wiki/Histamine
That said, I seriously doubt that mast cells are ultimately preventing you from achieving remission, and I have to agree with your doctor that intuitively, one would think that the Prednisone should have taken care of the symptoms. There is a remote possibility, of course, that the reason why the corticosteroids are not effective for everyone, is precisely because of a mast cell problem, but I think that's probably a pretty remote possibility. For sure, some "unknown" is involved, because, as we all agree, your case definitely does not fit the conventional MC pattern, not as far as achieving remission is concerned, anyway.
Imuran is a long-term treatment, (when used for severe cases of Crohn's and UC), and it has to be converted by the liver into 6-MP, (otherwise it has no beneficial effect for colitis), so please don't let your doctor forget to check your liver function on a regular basis. As Polly pointed out, it's a "big gun".
As hard as you've worked to achieve remission, success is long overdue. We'll all keep our fingers crossed that you start seeing some real relief, and hopefully, soon.
Tex
I see what you're saying, and the article you cited is written by Dr. Lewey, (you can track it down by the ezine database file ID number - 967681). Unfortunately, he also seems to be confused about the use of antihistamines for that purpose. Maybe that's part of the reason why he doesn't seem to realize that mastocytic enterocolitis is part of the family of syndromes known as microscopic colitis.
I realize that these guys are highly esteemed doctors, and I'm just a lowly peon, but here's the problem with the good doctors' interpretation of the issue, as I see it:
This quote comes from Wikipedia, and the red emphasis is mine. You can read the entire definition here:In common use, the term antihistamine refers only to H1 antagonists, also known as H1 antihistamines. It has been discovered that these H1-antihistamines are actually inverse agonists at the histamine H1-receptor, rather than antagonists per se.[1] Clinically, H1 antagonists are used to treat allergic reactions.
http://en.wikipedia.org/wiki/Antihistamine
Note that an agonist is defined as a chemical substance capable of activating a receptor to induce a full or partial pharmacological response. That implies that an inverse agonist acts to deactivate a receptor, so that a pharmacological response cannot be induced. What this all means is that the so-called "antihistamines", (in the H1 group), do not in fact modulate the function of the mast cells - instead they modulate the function of the H1 receptors that are present in the tissue of interest. That's a very important distinction, especially in light of the fact that the histamine receptors found in the colon are not type H1, they are type H4. As complex and specific as immune functions are in the human body, I seriously doubt that an inverse agonist designed to target H1 receptors, would have the foggiest idea of what to do about a type H4 receptor. In fact, it would almost surely either completely ignore it, or apply some inappropriate action. Therefore, there is no reason to assume that a type H1 "antagonist" would prevent a type H4 receptor from functioning according to it's normal "programmed" response.
I apologize if I'm not making my point clear, and if anyone sees a flaw in my logic, I wish you would point it out, but it appears to me that the aforementioned doctors are confusing apples with oranges. (Mike - Polly - am I all wet?) I can certainly see how most doctors would try to use H1 "antagonists" to treat a mast cell problem in the colon, because no one knows the true role of H4 histamine receptors, and types H1 and H2 "antagonists" are the only types available to use. Note that type H2 "antagonists" have the same problem as type H1 - they are actually not antagonists, rather, they are inverse agonists, at the H2 receptor. For more information on type H4 receptors, see the table at this site:
http://en.wikipedia.org/wiki/Histamine
That said, I seriously doubt that mast cells are ultimately preventing you from achieving remission, and I have to agree with your doctor that intuitively, one would think that the Prednisone should have taken care of the symptoms. There is a remote possibility, of course, that the reason why the corticosteroids are not effective for everyone, is precisely because of a mast cell problem, but I think that's probably a pretty remote possibility. For sure, some "unknown" is involved, because, as we all agree, your case definitely does not fit the conventional MC pattern, not as far as achieving remission is concerned, anyway.
Imuran is a long-term treatment, (when used for severe cases of Crohn's and UC), and it has to be converted by the liver into 6-MP, (otherwise it has no beneficial effect for colitis), so please don't let your doctor forget to check your liver function on a regular basis. As Polly pointed out, it's a "big gun".
As hard as you've worked to achieve remission, success is long overdue. We'll all keep our fingers crossed that you start seeing some real relief, and hopefully, soon.
Tex
Thanks, Tex. He said his patients with the mast cells respond to the Zyrtec, etc. He is doing blood work - he gave me a test kit to take to the hospital where I live and the test goes to Prometheus in San Diego, CA. The test is called Prometheus Thiopurine Metabolites (6-TGN, 6-MMPN). Interesting as I look at this lab slip the Prometheus lab also does tests like Dr. Fine. All the antibody and genetic tests. They must be blood tests though. He's not recommending I do those again now but I just see they are available at this same lab. Also interesting is that his clinical diagnosis is "colitis acute". Also written on this lab slip. He wants me to wait until the week of the 17th to do the tests. He says I need to be on the Imuran for a while before testing. I just want something to work.
Pat
Pat
-8
I think that Carrie, (Carole), had her gene tests done at Prometheus. They may use an older technology for the gene tests, because they only test for DQ-2 and DQ-8, (the celiac genes), without the subtypes that Enterolab reports.
Yes, I think that Prometheus is one of the, (or maybe even the), foremost national labs for serum testing. I don't believe that any lab anywhere in the world does stool tests for antibodies, except for Enerolab in Dallas, and possibly a lab in Italy. The lab in Italy has published work verifying the same results that Dr. Fine has found, but I'm not aware that they do any commercial testing of stool samples.
I assume he told you what the test kit he gave you is for, (to tell him exactly how the Imuran is working):
http://www.medicine.uiowa.edu/Path_Hand ... t2104.html
I sure can't argue with his diagnosis - there's no question that you have colitis, and it's definitely acute. I have a hunch the treatment will work - I just hope you don't have to be on it too long.
Tex
Yes, I think that Prometheus is one of the, (or maybe even the), foremost national labs for serum testing. I don't believe that any lab anywhere in the world does stool tests for antibodies, except for Enerolab in Dallas, and possibly a lab in Italy. The lab in Italy has published work verifying the same results that Dr. Fine has found, but I'm not aware that they do any commercial testing of stool samples.
I assume he told you what the test kit he gave you is for, (to tell him exactly how the Imuran is working):
http://www.medicine.uiowa.edu/Path_Hand ... t2104.html
I sure can't argue with his diagnosis - there's no question that you have colitis, and it's definitely acute. I have a hunch the treatment will work - I just hope you don't have to be on it too long.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.