Just renewed my prescription for entocort and saw the gastro doc. I stay on 3 pills a day for another month then we try tapering off. He says we have to find out how little I can take and still not have D. He is hoping we can get it to one a day... but he does know that everyone is different... some of his patients have been able to get completely off entocort but not many... most are at one a day or one every other day, I think...
I have gained about 12 pounds eating all the stuff I had given up over the last 3 years...LOL It isn't the drug.. it is the food choices for sure... Once Promised Land eggnog is no longer available in the store I should be able to start losing weight. I am addicted to the darn stuff... even if it bloats me like a toad.. at least it doesn't cause D this year...:)
I am so grateful my daughter in law talked me into seeing this doctor... he let me mess around doing things MY way until I was ready to try entocort. I am a stubborn old bat and have been through more than my share of "know it all docs" who don't know beans! This gastro doc seems to really care about his patients...
grannyh
Starting month 3 on entocort ec
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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kate_ce1995
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MaggieRedwings
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HI Granny,
Glad to hear it is going well, envy you the eggnog and also have a Gastro doc that lets one try their own ways and is willing to learn. I have not seen him now in over a year and that is a good sign.
Maggie
Glad to hear it is going well, envy you the eggnog and also have a Gastro doc that lets one try their own ways and is willing to learn. I have not seen him now in over a year and that is a good sign.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
Granny...I know what you mean about being able to eat certain foods again. Once I started taking Entocort and started having a normal life again, I sort of fell of the food wagon...haha...I started gaining weight! I can't blame it on the drug, but rather my lack of self-control. I am back on a low carb diet and have lost 6-7 pounds in the last week and a half. I have been baking cookies...trying new recipes, etc. and have managed to not eat any of it...... Amazing for me and my sweet tooth! Good luck... TTFN...JJ
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Liz
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- Location: Qld Australia
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Hi Granny
I am having some success with Entocort as well. Well mostly. I have had bronchitis following a virus & that upset the applecart a bit. I am only on 2 3 mg. capsules per day at the moment before I see my new GI doc in January. I even had a couple of olives the other day with no disastrous after effects. Taking it a bit easy though & not rushing in & going for all my favourites too much. Don't want to spend Christmas you know where.
Love
Liz
I am having some success with Entocort as well. Well mostly. I have had bronchitis following a virus & that upset the applecart a bit. I am only on 2 3 mg. capsules per day at the moment before I see my new GI doc in January. I even had a couple of olives the other day with no disastrous after effects. Taking it a bit easy though & not rushing in & going for all my favourites too much. Don't want to spend Christmas you know where.
Love
Liz
A smile is a light in the window of your face that shows that your heart is at home
Grannyh,
If you have to be on medication, it seems to me as though more people taking that route have reported to this group success with Entocort than with Asacol, unless my memory doesn't serve me correctly.
Also, you old timers, wasn't there a time when the members couldn't beg an Entecort script out of their GIs? I believe that some of the primary care folks preferred that a specialist order this. Has anyone been able to get their primary to order it, I mean INITIALLY rather than just a continuation of what their GI got them started on? Think this treatment must be catching on nowadays -- good thing since so many are now being diagnosed with M.C.
Grannyh, you're the PERFECT illustration of why I elected to do the stool testing when I initially went off of gluten and noticed great relief, even before the other sensitivities were discovered. I was afraid that I might be doing something unnecessary, and that later, I'd have a relapse or something. Thus far, that's the ONLY money I've spent since I had the colonoscopy, so I figure it saved me not only money, but lots of doubt and frustration not knowing for sure.
My curiosity is killing me as to the real cause of your sudden onset after that prep. My hope is that since the prep seemed to be the "cause," and hopefully, not a trigger for something that was LATENT, that you'll be one of the lucky ones who gets to wean completely off of any treatment with complete remission FOR LIFE. Wouldn't that be nice!!!
grannyh, We've talked so much about the D part of your symptom profile, and it's been a while, so forgive me if I'm forgetting something, but I don't remember your mentioning anything about some of the other more common autoimmune conditions so many of us have, like fibro, arthritis, thyroid, migraines, autoimmune skin and eye conditions, etc.
Since we have such good profiles of those of us with gluten, etc. sensitivities, I think it would be nice to get some information from Dr. Fine's research if we could, as to what the profile of the few who don't test positive to gluten, have in the way of other autoimmune conditions among that research population. If they don't have ANY other symptoms suggesting other autoimmune conditions, that would be different from most, I'll bet. It will be interesting to see what these individuals look like as a whole. Since the genes are so common, I guess that part would be fairly irrelevant among this smaller part of his patient population, but perhaps there's still more susceptibility to irritation to the colon in anyone with our genes -- who knows?
For any possible lerkers or new members:
Also, it's important to be aware of any possible MASKING of symptoms by OTHER meds, such as some of those, like the Questran type drugs that are designed PRIMARILY for OTHER problems, such as in this case, to lower cholesterol, which might MASK symptoms. If at least ONE of your docs doesn't put all these pieces together, med-wise, then you can still catch it yourself. Someone should've told grannyh that Questran would MASK her GI symptoms if they knew she was trying an elimination diet.
Soooo, I recommend becoming familiar with the list of medical treatments that have been/are prescribed for M.C., so that you'll know that you won't be able to tell whether or not your diet is helping with the GI symptoms if you're on these drugs as just an example of how knowing YOUR medications can prove helpful.
Since meds for cholesterol lowering are sooo important to remain on as prescribed by your doc, that seems to me to just leave the choice of stool testing if you want to clear up that matter while your on a "masking" drug,, and get on with it. One just can't do an elimination diet while on a "masking" drug.
While I'm at it, Entecort is a steroid, so if anyone is put on a steroid, be sure to take it correctly, and don't monkey around. It can be life threatening taking yourself off steroids too quickly. I don't think this can be said enough.
Anyway, sorry for all those of you who are already familiar with this stuff, but occasionally, someone may be looking in the General Area instead of the Treatment Area.
Good luck to ya, grannyh. I know that you're going to do great!
Yours, Luce
If you have to be on medication, it seems to me as though more people taking that route have reported to this group success with Entocort than with Asacol, unless my memory doesn't serve me correctly.
Also, you old timers, wasn't there a time when the members couldn't beg an Entecort script out of their GIs? I believe that some of the primary care folks preferred that a specialist order this. Has anyone been able to get their primary to order it, I mean INITIALLY rather than just a continuation of what their GI got them started on? Think this treatment must be catching on nowadays -- good thing since so many are now being diagnosed with M.C.
Grannyh, you're the PERFECT illustration of why I elected to do the stool testing when I initially went off of gluten and noticed great relief, even before the other sensitivities were discovered. I was afraid that I might be doing something unnecessary, and that later, I'd have a relapse or something. Thus far, that's the ONLY money I've spent since I had the colonoscopy, so I figure it saved me not only money, but lots of doubt and frustration not knowing for sure.
My curiosity is killing me as to the real cause of your sudden onset after that prep. My hope is that since the prep seemed to be the "cause," and hopefully, not a trigger for something that was LATENT, that you'll be one of the lucky ones who gets to wean completely off of any treatment with complete remission FOR LIFE. Wouldn't that be nice!!!
grannyh, We've talked so much about the D part of your symptom profile, and it's been a while, so forgive me if I'm forgetting something, but I don't remember your mentioning anything about some of the other more common autoimmune conditions so many of us have, like fibro, arthritis, thyroid, migraines, autoimmune skin and eye conditions, etc.
Since we have such good profiles of those of us with gluten, etc. sensitivities, I think it would be nice to get some information from Dr. Fine's research if we could, as to what the profile of the few who don't test positive to gluten, have in the way of other autoimmune conditions among that research population. If they don't have ANY other symptoms suggesting other autoimmune conditions, that would be different from most, I'll bet. It will be interesting to see what these individuals look like as a whole. Since the genes are so common, I guess that part would be fairly irrelevant among this smaller part of his patient population, but perhaps there's still more susceptibility to irritation to the colon in anyone with our genes -- who knows?
For any possible lerkers or new members:
Also, it's important to be aware of any possible MASKING of symptoms by OTHER meds, such as some of those, like the Questran type drugs that are designed PRIMARILY for OTHER problems, such as in this case, to lower cholesterol, which might MASK symptoms. If at least ONE of your docs doesn't put all these pieces together, med-wise, then you can still catch it yourself. Someone should've told grannyh that Questran would MASK her GI symptoms if they knew she was trying an elimination diet.
Soooo, I recommend becoming familiar with the list of medical treatments that have been/are prescribed for M.C., so that you'll know that you won't be able to tell whether or not your diet is helping with the GI symptoms if you're on these drugs as just an example of how knowing YOUR medications can prove helpful.
Since meds for cholesterol lowering are sooo important to remain on as prescribed by your doc, that seems to me to just leave the choice of stool testing if you want to clear up that matter while your on a "masking" drug,, and get on with it. One just can't do an elimination diet while on a "masking" drug.
While I'm at it, Entecort is a steroid, so if anyone is put on a steroid, be sure to take it correctly, and don't monkey around. It can be life threatening taking yourself off steroids too quickly. I don't think this can be said enough.
Anyway, sorry for all those of you who are already familiar with this stuff, but occasionally, someone may be looking in the General Area instead of the Treatment Area.
Good luck to ya, grannyh. I know that you're going to do great!
Yours, Luce
Hi Granny!!
Glad to see that the Entocort is working for you!!
I presently am on 1 a day and that is what my GI is going to keep me on.
He said that at that low of a dose he feels it will continue to be safe.
I just had my yearly complete blood work profiles done and all results were good.
Just to mention, I have never had any of the other autoimmune problems like arthritis, fibro, thyroid trouble. skin or eye problems or migraines.
Months ago I had emailed Dr. Fine and asked him if he felt that if one is on Entocort , that the med would mask the symptoms and he replied with a NO!!!!!
The only intolerance that does break thru for me is if I slip and miss something that has dairy in it. Then I know.... But there have been times when I know that I've eaten something that has a small percentage of dairy in it, and have not had a problem with it.
Keep us posted as to how you are doing thru the weaning down process of the Entocort..
Love
Dee~~~~~~
Glad to see that the Entocort is working for you!!
I presently am on 1 a day and that is what my GI is going to keep me on.
He said that at that low of a dose he feels it will continue to be safe.
I just had my yearly complete blood work profiles done and all results were good.
Just to mention, I have never had any of the other autoimmune problems like arthritis, fibro, thyroid trouble. skin or eye problems or migraines.
Months ago I had emailed Dr. Fine and asked him if he felt that if one is on Entocort , that the med would mask the symptoms and he replied with a NO!!!!!
The only intolerance that does break thru for me is if I slip and miss something that has dairy in it. Then I know.... But there have been times when I know that I've eaten something that has a small percentage of dairy in it, and have not had a problem with it.
Keep us posted as to how you are doing thru the weaning down process of the Entocort..
Love
Dee~~~~~~
Hi Grannyh,
Three cheers for Entocort!
It's about time something worked for you! You had such a rough last year.
Dee,
Dairy is a B****, isn't it? I have found that I get the worst symptoms of all with dairy. I snuck some dairy several days in a row last week and really suffered! Felt worse than I have in years. Am OK now, though.
Love,
Polly
Three cheers for Entocort!
It's about time something worked for you! You had such a rough last year.
Dee,
Dairy is a B****, isn't it? I have found that I get the worst symptoms of all with dairy. I snuck some dairy several days in a row last week and really suffered! Felt worse than I have in years. Am OK now, though.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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artteacher
- Rockhopper Penguin
- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
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Amen to your "Dairy is a *B" comment", Polly. If I even breath the fumes off a glass of milk . . . well you know the rest.
I had a suggestion. Because I suspect there will be more and more new people who stumble on this site, would it be a good idea to copy old conversations of an educational nature into the main message board every couple days?
And grannyh, I'm so glad you found this doctor. There's nothing worse than having a doc that dismisses your problems, is there? Anyway, I'm happy for you that things are looking up.
I had a suggestion. Because I suspect there will be more and more new people who stumble on this site, would it be a good idea to copy old conversations of an educational nature into the main message board every couple days?
And grannyh, I'm so glad you found this doctor. There's nothing worse than having a doc that dismisses your problems, is there? Anyway, I'm happy for you that things are looking up.
Hi Marsha,
I agree that educational posts should not be allowed to just fall by the wayside. Rather than to repost them repeatedly to the MMB, though, it would be much better to copy them to a more appropriate forum. This board has many information forums for specific types of information, whereas the MMB is used for topics of any nature, mostly casual.
Even posting them to the Discussions on Treatment Options Using Diet, and/or Medications discussion forum, would be better than reposting to the MMB.
Directing the information to the appropriate forum, will allow newbies to locate the information they need, without them having to weed through a zillion posts of umpteen different catagories, (and more importantly, without forcing all members to have to cull out a bunch of old posts that they have already viewed, previously). IOW, that's exactly what all those information forums are for.
Tex
I agree that educational posts should not be allowed to just fall by the wayside. Rather than to repost them repeatedly to the MMB, though, it would be much better to copy them to a more appropriate forum. This board has many information forums for specific types of information, whereas the MMB is used for topics of any nature, mostly casual.
Even posting them to the Discussions on Treatment Options Using Diet, and/or Medications discussion forum, would be better than reposting to the MMB.
Directing the information to the appropriate forum, will allow newbies to locate the information they need, without them having to weed through a zillion posts of umpteen different catagories, (and more importantly, without forcing all members to have to cull out a bunch of old posts that they have already viewed, previously). IOW, that's exactly what all those information forums are for.
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.
Dee,
That's interesting. Then, do you think, in general, your experience contradicts Dr. Fine's "NO" to the masking in most cases?
Perhaps we can hash some of these things out, and then, reduce it down to something to put in another room for the newbies. Sometimes I fear that we get too technical for a newbie.
Sometimes I wonder if the newbies we've had are not posting questions because they've found all they need to know in the introductory areas, or if it's because they don't see other newbies in the process of asking questions. Sorta like having to have a job before you can get a job, isn't it? Ha!
Also, Dee, I didn't realize that your symptoms were totally GI. Perhaps we should do another poll, but someone else with a 'puter would hafta post it. You whooo, anyone listenin'??
Yours, Luce
That's interesting. Then, do you think, in general, your experience contradicts Dr. Fine's "NO" to the masking in most cases?
Perhaps we can hash some of these things out, and then, reduce it down to something to put in another room for the newbies. Sometimes I fear that we get too technical for a newbie.
Sometimes I wonder if the newbies we've had are not posting questions because they've found all they need to know in the introductory areas, or if it's because they don't see other newbies in the process of asking questions. Sorta like having to have a job before you can get a job, isn't it? Ha!
Also, Dee, I didn't realize that your symptoms were totally GI. Perhaps we should do another poll, but someone else with a 'puter would hafta post it. You whooo, anyone listenin'??
Yours, Luce