That's really good news. Your remission has to be one of the most significant events of 2007, especially since you are able to push the dosage rate down that low, this soon.
I hope that you can continue to enjoy remission forever. You've earned it, to say the least.
Love,
Tex
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm sorry to report that some of my symptoms are returning since I've reduced my Entocort dosage to 3 mg/day. Sometimes Norman visits, mostly he doesn't. Thursday I almost didn't make it to the bathroom in time. Friday I had small sores in my mouth, just like I did before taking the Entocort.
Friday I drank almond milk instead of Rice Dream. I didn't eat any ghee, blueberries nor an apple. All of these are on my suspect list. Late last night I had a soft BM. I went to bed feeling pretty discouraged. This morning Norman showed up and the sores in my mouth are either gone or healing.
I'm not sure what to do. Is it possible I reduced the dosage too soon? I was on 9 mg/day for three months, then 6 mg/day for one month. I've been on 3 mg/day for two weeks. Should I go back to 6 mg/day? At what point can I safely reduce it? I never really got to the point where I just had one Norman a day; I mostly had two.
I realize that it's likely that I have additional intolerances. Should I stay the 3 mg course and try to determine what they are?
Friday I drank almond milk instead of Rice Dream. I didn't eat any ghee, blueberries nor an apple. All of these are on my suspect list. Late last night I had a soft BM. I went to bed feeling pretty discouraged. This morning Norman showed up and the sores in my mouth are either gone or healing.
I'm not sure what to do. Is it possible I reduced the dosage too soon? I was on 9 mg/day for three months, then 6 mg/day for one month. I've been on 3 mg/day for two weeks. Should I go back to 6 mg/day? At what point can I safely reduce it? I never really got to the point where I just had one Norman a day; I mostly had two.
I realize that it's likely that I have additional intolerances. Should I stay the 3 mg course and try to determine what they are?
You never know what you can do until you have to do it.
Hi Gloria,
Sorry to see that kind of bad news, but the road to recovery is sometimes bumpy. It sure sounds to me as though your dosage rate of Entocort is being sort of overwhelmed at this point. Some GI docs, (and I believe the general consensus of opinion of board members here who have gone the Entocort-plus-diet route), is that the full dosage rate should be continued for at least eight to twelve weeks past the point at which remission from symptoms has been achieved. Or, some recommend a flat six month treatment at full dose, before tapering down the dosage rate.
Also, I suspect that sometimes treatments involving inadequate doses, or inadequate duration, not only delay success, but may even cause the need for higher than normal doses subsequently, in order to do the job, as some "bugs" become more tolerant of treatments if they're not controlled in a timely manner.
There may be some on the market now, but I was never able to find an almond milk that did not contain soy, though I believe that mouth sores are very likely symptoms of a gluten reaction - at least that's the only time that I was plagued by them.
One other thing to consider is the fact that most of us have found that during our struggles to achieve remission, we occasionally had reactions now and then that we couldn't explain, (especially during the fall of the year).
I believe that the diet will eventually do the job, but the Entocort is supposed to be calming the inflammation in the meantime, so that you don't have to suffer while the diet allows the body to slowly purge itself of all the antibodies to gluten, (and your other intolerances). IMO, (and I am certainly no doctor), you need to increase the dosage rate to a level where the symptoms are suppressed, because when your body is reacting, it's not likely to be able to do much healing.
Tex
Sorry to see that kind of bad news, but the road to recovery is sometimes bumpy. It sure sounds to me as though your dosage rate of Entocort is being sort of overwhelmed at this point. Some GI docs, (and I believe the general consensus of opinion of board members here who have gone the Entocort-plus-diet route), is that the full dosage rate should be continued for at least eight to twelve weeks past the point at which remission from symptoms has been achieved. Or, some recommend a flat six month treatment at full dose, before tapering down the dosage rate.
Also, I suspect that sometimes treatments involving inadequate doses, or inadequate duration, not only delay success, but may even cause the need for higher than normal doses subsequently, in order to do the job, as some "bugs" become more tolerant of treatments if they're not controlled in a timely manner.
There may be some on the market now, but I was never able to find an almond milk that did not contain soy, though I believe that mouth sores are very likely symptoms of a gluten reaction - at least that's the only time that I was plagued by them.
One other thing to consider is the fact that most of us have found that during our struggles to achieve remission, we occasionally had reactions now and then that we couldn't explain, (especially during the fall of the year).
I believe that the diet will eventually do the job, but the Entocort is supposed to be calming the inflammation in the meantime, so that you don't have to suffer while the diet allows the body to slowly purge itself of all the antibodies to gluten, (and your other intolerances). IMO, (and I am certainly no doctor), you need to increase the dosage rate to a level where the symptoms are suppressed, because when your body is reacting, it's not likely to be able to do much healing.
Tex
Gloria,
I agree with Tex. Also, since you and I are so similar in our intolerances (even the Pepto Bismol!), maybe it's the carrageenen in the nut milks that you cannot tolerate.
Love,
Polly
P.S. Did you have the gene test with Dr. Fine? It would be interesting to compare to mine.
I agree with Tex. Also, since you and I are so similar in our intolerances (even the Pepto Bismol!), maybe it's the carrageenen in the nut milks that you cannot tolerate.
Love,
Polly
P.S. Did you have the gene test with Dr. Fine? It would be interesting to compare to mine.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thank you both for your responses. I think I'll go back to the 6 mg/day since that seemed to be doing the job. I should probably wait until Norman visits once a day for a month before I try to taper off. I thought I was tapering slowly since my GI wanted me to get off the Entocort entirely within two weeks. Luckily I didn't follow his advice, but I will have to call him for a prescription renewal soon. I think he'll give it to me.
Yes Polly, as I recall, our genetic tests are identical. Here are my results from Enterolab:
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)
Does that mean we have the same intolerances, or just similar ones? Has Dr. Fine been able to produce a list of likely food intolerances based upon the genetic test results? If he or this group could come up with such a correspondence, it would be extremely helpful to us newbies.
Yes Polly, as I recall, our genetic tests are identical. Here are my results from Enterolab:
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)
Does that mean we have the same intolerances, or just similar ones? Has Dr. Fine been able to produce a list of likely food intolerances based upon the genetic test results? If he or this group could come up with such a correspondence, it would be extremely helpful to us newbies.
You never know what you can do until you have to do it.
I'm not aware that Dr. Fine, or anyone else, has assembled a list that correlates various food intolerances with genes, (other than gluten), but that's the reason why we try to add as many data points as we can, to our own list in the "Polls" forum. We're hoping that some day we will be able to pick out some correlations.
If your and Polly's test results were the same, that's some very interesting information, especially since you both seem to be super sensitive to numerous, (and similar), food items.
Would you mind posting your gene data to our "gene thread", in the "Polls" forum? Or, if you would prefer, I'll be happy to do it, with your permission to do so. The thread is located here:
http://www.perskyfarms.com/phpBB2/viewt ... 5&start=15
Note that this link takes you to the second page of the thread.
Thanks,
Tex
P S I think that you're on the right track with your Entocort plan.
If your and Polly's test results were the same, that's some very interesting information, especially since you both seem to be super sensitive to numerous, (and similar), food items.
Would you mind posting your gene data to our "gene thread", in the "Polls" forum? Or, if you would prefer, I'll be happy to do it, with your permission to do so. The thread is located here:
http://www.perskyfarms.com/phpBB2/viewt ... 5&start=15
Note that this link takes you to the second page of the thread.
Thanks,
Tex
P S I think that you're on the right track with your Entocort plan.
It would be great if you'd post my gene data to the board. That way it could be listed with the others and might help to show a pattern.
Gloria
P S I upped my dosage to 6 mg after reading yours and Polly's recommendations. So far, so good today. I'll let you know how I'm doing because I think it's helpful for others to learn from our trials and errors.
Gloria
P S I upped my dosage to 6 mg after reading yours and Polly's recommendations. So far, so good today. I'll let you know how I'm doing because I think it's helpful for others to learn from our trials and errors.
You never know what you can do until you have to do it.
It's good to see that you're doing better today. I definitely agree with you that information on the ups and downs that we go through on our way back to health, is extremely valuable for someone trying to fine tune her or his own treatment program. You must be a teacher, and a good one.
Thanks,
Tex
Thanks,
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.
Well, yes Wayne, I was a high school mathematics teacher for a dozen years, then I took the position of technology director ten years ago. Now I teach the teachers how to use technology - not always an easy task! I will probably be retiring in July.
I mentioned in another post that I'm back on track after increasing the Entocort back to 6 mg./day. I had a reaction to eating out in a restaurant the other day - I've got to avoid them like the plague, I guess.
I have a new concern. On Wednesday I baked some quick bread (for gifts) using regular flour. I was careful to not let it float around the air, but it still may have. I used the aerosol can of Baker's Joy, which is an oil-flour mixture, to grease the pans. I immediately started coughing and it took about 1/2 hour for my throat to settle down. I attributed it to the aerosol and my mild asthma.
Then this morning after eating breakfast (buckwheat cereal, banana, Rice Dream milk, cranberry juice and GF vitamin supplements), I had the same reaction. I began coughing and it didn't stop for about 1/2 hour. No aerosol today, so I'm concerned that I reacted to something in my breakfast. This is my typical breakfast - why the sudden throat reaction?
I mentioned in another post that I'm back on track after increasing the Entocort back to 6 mg./day. I had a reaction to eating out in a restaurant the other day - I've got to avoid them like the plague, I guess.
I have a new concern. On Wednesday I baked some quick bread (for gifts) using regular flour. I was careful to not let it float around the air, but it still may have. I used the aerosol can of Baker's Joy, which is an oil-flour mixture, to grease the pans. I immediately started coughing and it took about 1/2 hour for my throat to settle down. I attributed it to the aerosol and my mild asthma.
Then this morning after eating breakfast (buckwheat cereal, banana, Rice Dream milk, cranberry juice and GF vitamin supplements), I had the same reaction. I began coughing and it didn't stop for about 1/2 hour. No aerosol today, so I'm concerned that I reacted to something in my breakfast. This is my typical breakfast - why the sudden throat reaction?
You never know what you can do until you have to do it.
I thought so. I'm sure that's some very challenging work, at times, but someone has to do it. I'm sure you'll be missed when you retire.
I've gotten to where I rarely eat away from home, unless I'm doing the cooking, and that usually only happens on camping trips, and situations of that sort.
Hmmmmmmm. That's a tough question. I really don't see a reason for the coughing after that breakfast.
Coughing is normally associated with things such as postnasal drip, rhinitis, asthma, sinus infection, bronchitis, pneumonia, etc., which are, of course, all respiratory afflictions. The only food-associated cause that I can think of, would be reflux. Do you by any chance have GERD?
Maybe someone else can think of something that I'm overlooking.
Wayne
I've gotten to where I rarely eat away from home, unless I'm doing the cooking, and that usually only happens on camping trips, and situations of that sort.
Hmmmmmmm. That's a tough question. I really don't see a reason for the coughing after that breakfast.
Coughing is normally associated with things such as postnasal drip, rhinitis, asthma, sinus infection, bronchitis, pneumonia, etc., which are, of course, all respiratory afflictions. The only food-associated cause that I can think of, would be reflux. Do you by any chance have GERD?
Maybe someone else can think of something that I'm overlooking.
Wayne
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.
I thought I'd give an update to my progress. I've been on Entocort about 5 months. It's been about 2 1/2 weeks since I went back up to 6 mg. of Entocort a day. I'm doing even better than I was previously on the 6 mg./day. Norman visits me only once a day now, whereas he visited twice a day before. I usually will only have a flare after I've eaten away from home, but I'm back on track the next day.
I'm still astonished at the prevalence of hidden triggers. I just noticed that canned tuna in "water" really has a soy-based broth. Tuna without the broth is labeled "Premium" and has a corresponding premium price.
I bought some "peach juice" and later noticed that it had soy oil in its list of ingredients.
I also realized that the body cream I've been using was made from soy. I thought that the redness on my skin was due to dryness, so I kept putting more cream on my skin. Once I switched to a non-soy-based cream, the redness, which was really a rash, disappeared.
All of the body creams my DH bought me for Christmas had soy and/or oat derivatives in them. Luckily, I can give them to my daughters.
I'm going to be more conscious of high fructose corn syrup used to sweeten foods. It's on my suspect list.
I'm still astonished at the prevalence of hidden triggers. I just noticed that canned tuna in "water" really has a soy-based broth. Tuna without the broth is labeled "Premium" and has a corresponding premium price.
I bought some "peach juice" and later noticed that it had soy oil in its list of ingredients.
I also realized that the body cream I've been using was made from soy. I thought that the redness on my skin was due to dryness, so I kept putting more cream on my skin. Once I switched to a non-soy-based cream, the redness, which was really a rash, disappeared.
All of the body creams my DH bought me for Christmas had soy and/or oat derivatives in them. Luckily, I can give them to my daughters.
I'm going to be more conscious of high fructose corn syrup used to sweeten foods. It's on my suspect list.
You never know what you can do until you have to do it.
That's a very encouraging update. It's nice to see that you're making such good progress, now.
I've also often wondered why manufacturers feel obligated to put everything except the kitchen sink, into products that should have a simple, logical ingredient list.
If you were getting a rash, from the use of a soy-based body cream, you're evidently allergic, (as opposed to intolerant), to one or more of the ingredients, and it might be soy, of course.
When I was still reacting, I was suspicious of corn and all it's derivatives, so I cut it out of my diet for a few years, when I was healing. It was tough at first, because I had been drinking cokes since my early teens, and I loved the taste of it. I was afraid Coca-Cola stock would crash when I quit. LOL. A couple of years ago, I decided to try one or two again, and lo and behold, the flavor didn't appeal to me any more, so I didn't resume drinking them.
These days, I can eat corn and corn syrup without any problems, but I still avoid HFCS as much as possible, because I believe that the food industry is feeding us way too much of it, since it's development in the mid-1980s. If I drink a soft drink now, it's one that's sweetened with cane sugar, not HFCS.
Thanks for the update, and congratulations on a good report.
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.
Another update...
It's been 6 months since I began a 9 mg. dosage of Entocort. You may recall that six weeks ago I went from 6 mg. to 3 mg. and began to have problems within a week or so. After the second week on 3 mg., I went back to 6 mg., per recommendations from members here, and stayed on 6 mg. for a month. Was doing great; Norman visited every day; if not, I could pinpoint the reason. For the past six days I've been taking only 3 mg. Thursday I came down with a cold and Friday and Saturday I took 1-2 cold capsules because I had to work. I checked the ingredients and they didn't appear to have gluten, but who knows what the chemicals do? Yesterday I made three trips to the bathroom and today so far, two. I haven't taken a cold capsule since yesterday morning.
I have an appointment with my GI tomorrow and I don't know what to tell him. He still has no idea that I'm on a restricted diet. I'm beginning to wonder if I'll ever be able to successfully reduce to 3 mg. a day. I seem to react immediately if I eat anything suspicious, even on the Entocort. Maybe I should stay on 6 mg. for a much longer time.
It's been 6 months since I began a 9 mg. dosage of Entocort. You may recall that six weeks ago I went from 6 mg. to 3 mg. and began to have problems within a week or so. After the second week on 3 mg., I went back to 6 mg., per recommendations from members here, and stayed on 6 mg. for a month. Was doing great; Norman visited every day; if not, I could pinpoint the reason. For the past six days I've been taking only 3 mg. Thursday I came down with a cold and Friday and Saturday I took 1-2 cold capsules because I had to work. I checked the ingredients and they didn't appear to have gluten, but who knows what the chemicals do? Yesterday I made three trips to the bathroom and today so far, two. I haven't taken a cold capsule since yesterday morning.
I have an appointment with my GI tomorrow and I don't know what to tell him. He still has no idea that I'm on a restricted diet. I'm beginning to wonder if I'll ever be able to successfully reduce to 3 mg. a day. I seem to react immediately if I eat anything suspicious, even on the Entocort. Maybe I should stay on 6 mg. for a much longer time.
You never know what you can do until you have to do it.