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Hi all - I am just wondering what the next steps are if entocort doesn't work. I have been on it since the end of July and honestly, after a couple of weeks of feeling better it almost seems like I am getting worse. I continue to be GF, soy free, corn free, dairy free, nut free, egg free (egg free most of the time - I was using Udi's bread for a while)..... I have been thinking about the MRT testing but it's expensive and I just did enterolab (which gave me negatives for everything). Should I keep plugging away on the entocort? I am meeting with my gastro at the end of the month, just wondering what your thoughts are - maybe I should move my appointment closer if I can....
Thanks, as always,
Lisa
what is next if entocort doesn't work?
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Lisa,
Apparently you've been on Entocort for roughly 5 weeks now. Hmmmm. You should have seen some improvement by now. If you don't see improvement within the next 2 or 3 weeks, something is obviously not going as it should. You didn't say, so I assume that you're taking the normal dose, (9 mg per day). If you're not, then you might need to move up to that dose.
There's always the possibility that the Enterolab test results might be valid, and something other than food sensitivities are causing your symptoms. Are you taking any other drugs that might be associated with triggering MC, such as NSAIDs, PPIs, SSRIs, bisphosphonates, statins, etc.? HRT can also trigger MC, whether administered orally, or by transdermal patches. Is there any other possible trigger that we might be overlooking?
If none of these apply, and if you're already taking 9 mg of Entocort daily, you might have to try discontinuing the use of all commercially-processed foods, and cook everything from scratch, using simple ingredients, known to be safe. I assume that you're already following a low-fiber diet, (no fruits, and only limited amounts of peeled, thoroughly cooked veggies), and no artificial sweeteners, with only limited amounts of sugar, etc.
If I were in your shoes, I would stick with it a while longer, (it took me a year and a half to reach remission, but I didn't take any meds), because obviously you've got a tough case on your hands, and tough cases take longer to resolve.
Good luck, and please keep us updated,
Tex
P. S. Did you ever determine whether or not you might have selective IgA deficiency? That could have a bearing on a decision about the next move.
Apparently you've been on Entocort for roughly 5 weeks now. Hmmmm. You should have seen some improvement by now. If you don't see improvement within the next 2 or 3 weeks, something is obviously not going as it should. You didn't say, so I assume that you're taking the normal dose, (9 mg per day). If you're not, then you might need to move up to that dose.
There's always the possibility that the Enterolab test results might be valid, and something other than food sensitivities are causing your symptoms. Are you taking any other drugs that might be associated with triggering MC, such as NSAIDs, PPIs, SSRIs, bisphosphonates, statins, etc.? HRT can also trigger MC, whether administered orally, or by transdermal patches. Is there any other possible trigger that we might be overlooking?
If none of these apply, and if you're already taking 9 mg of Entocort daily, you might have to try discontinuing the use of all commercially-processed foods, and cook everything from scratch, using simple ingredients, known to be safe. I assume that you're already following a low-fiber diet, (no fruits, and only limited amounts of peeled, thoroughly cooked veggies), and no artificial sweeteners, with only limited amounts of sugar, etc.
If I were in your shoes, I would stick with it a while longer, (it took me a year and a half to reach remission, but I didn't take any meds), because obviously you've got a tough case on your hands, and tough cases take longer to resolve.
Good luck, and please keep us updated,
Tex
P. S. Did you ever determine whether or not you might have selective IgA deficiency? That could have a bearing on a decision about the next move.
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, Tex. Yes - 9 mg a day, and yes, I am not taking anything else.
I don't use artificial sweeteners and don't eat much fruit - maybe an occasional bite of melon or some grapes - but certainly not often. I rarely go out and don't eat any processed foods (though I do have some gluten free bars but they are nut, soy, dairy free - that I can throw in my bag if I am somewhere and need something). My diet is basically rice and potato based, with some meats and fish. I was eating Udi's bread and having sandwiches with turkey but I have stopped that too because I think Udi's has eggs in it.
I didn't determine whether I was IgA deficient - I haven't asked my doctor about that one. I will.
The one thing that is disturbing is that the entocort did make me feel better for awhile, but now I feel like it's not working at all (though I guess it could be worse). I guess I need to think about whether I want to spend the money on the MRT - ugh - hard pill to swallow after spending $500+ on the enterlab with not helpful results. I am just tired.
Lisa
I don't use artificial sweeteners and don't eat much fruit - maybe an occasional bite of melon or some grapes - but certainly not often. I rarely go out and don't eat any processed foods (though I do have some gluten free bars but they are nut, soy, dairy free - that I can throw in my bag if I am somewhere and need something). My diet is basically rice and potato based, with some meats and fish. I was eating Udi's bread and having sandwiches with turkey but I have stopped that too because I think Udi's has eggs in it.
I didn't determine whether I was IgA deficient - I haven't asked my doctor about that one. I will.
The one thing that is disturbing is that the entocort did make me feel better for awhile, but now I feel like it's not working at all (though I guess it could be worse). I guess I need to think about whether I want to spend the money on the MRT - ugh - hard pill to swallow after spending $500+ on the enterlab with not helpful results. I am just tired.
Lisa
Lisa,
Speaking of selective IgA deficiency, it could be the cause of your symptoms. Maybe your next step should be to determine if this might be a possibility in your case. Consider this, which comes under the heading Clinical Features of Selective IgA Deficiency, at the site referenced below:
http://primaryimmune.org/about-primary- ... deficiency
According to the Merck Manual for Health Care Professionals, these are the clinical findings, (IOW, the symptoms), for selective IgA deficiency:
Tex
Speaking of selective IgA deficiency, it could be the cause of your symptoms. Maybe your next step should be to determine if this might be a possibility in your case. Consider this, which comes under the heading Clinical Features of Selective IgA Deficiency, at the site referenced below:
The second phrase that I emphasized in red describes what happens with any IBD, including MC.A common problem in IgA deficiency is susceptibility to infections. This is seen in about half of the patients with IgA deficiency that come to medical attention. Recurrent ear infections, sinusitis, bronchitis and pneumonia are the most common infections seen in patients with Selective IgA Deficiency. Some patients also have gastrointestinal infections and chronic diarrhea. The occurrence of these kinds of infections is easy to understand since IgA protects mucosal surfaces. These infections may become chronic. Furthermore, the infection may not completely clear with treatment, and patients may have to remain on antibiotics for longer than usual.
A second major problem in IgA deficiency is the occurrence of autoimmune diseases. These are found in about 25% to 33% of patients who seek medical help. In autoimmune diseases, individuals produce antibodies or T-lymphocytes which react with their own tissues with resulting inflammation and damage. Some of the more frequent autoimmune diseases associated with IgA deficiency are: Rheumatoid Arthritis, Systemic Lupus Erythematosis and Immune Thrombocytopenic Purpura (ITP). These autoimmune diseases may cause sore and swollen joints of the hands or knees, a rash on the face, anemia (a low red blood cell count) or thrombocytopenia (a low platelet count). Other kinds of autoimmune disease may affect the endocrine system and/or the gastrointestinal system.
http://primaryimmune.org/about-primary- ... deficiency
According to the Merck Manual for Health Care Professionals, these are the clinical findings, (IOW, the symptoms), for selective IgA deficiency:
The Merck Manual suggests that the prevalence of selective IgA deficiency may be approximately one in 500, but some sources point out that it seems to be 10 to 15 times more common among individuals who are sensitive to gluten. If that's true, it may be much more common than most of us realize.Sometimes asymptomatic
Recurrent sinopulmonary infections, diarrhea, allergies (including anaphylactic transfusion reactions), autoimmune disorders (eg, celiac disease, inflammatory bowel disease, SLE, chronic active hepatitis)
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.