After more than 2 years of entocort at 3 times a day...for the last few months I have been down to one a day and have skipped a day at times. I thought that would never happen...
Yesterday I went to back to the gastro doctor for a refill on pills. Remember he is the one who has at least 10 of us MC patients. He said he has had his LC patients able to wean off the entocort entirely but the CC patients like me have not been able to do that. He opines that the LC is an inflammation that is reduced and then eliminated allowing the patient to get off the medicine entirely. For us with CC there is a thickening that he feel probably will never go away.. sigh..
However, he said that since I am able to get down to one pill a day for however long that lasts is good. He also said he would never submit me to a colonoscopy to merely satisfy his curiosity about what changes may or may not be taking place that have allowed me to get to one pill a day. I love this man!:) He said he has had no indication of problems with long term use of the entocort on either one pill or 3 pills a day.
I have to admit that I have not followed any diet since I started the entocort.. although I do not eat fried foods or a lot of dairy, or bread.
One of the great things about the support at this site is that everyone is allowed to find their own way with the MC disease issues. We know that nothing really works for everyone anyway:)
I am extremely lucky that my insurance pays for the entocort..the deductible is quite high but nowhere near the retail cost of the drug. Now that I am down to one pill a day a one month prescription could last three months... yippee!!
The doctor wrote me a prescription for a year for three pills a day since there is no way of knowing when I may need to increase the daily dosage. He told me he or I or both of us may get a letter from the insurance company suggesting a re evaluation of the dosage since it doesn't appear that I am taking a full dosage of the medicine. He said to ignore the letter if it should arrive.. he just throws them away. He said that so far he has had no problems. In some cases he has to tell them that the level of use fluctuates widely and thus far that has satisfied the insurance companies. He said they just want to make more money.. of course they would rather have me pay my co pay for 30 pills a month rather than the same copay for pills that might last three months...
Other than a few trips to the potty in the morning it is great to have my life back without diapers!!!!!
grannyh
Entocort Update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
for U Granny---what a great comfort to go go without DEPENDS!!!Congrats on a great report---and I luve ya GI--NO COLONOSCOPY--
U surely have earned a
and so much more--Keep the good news coming-- and leave anote for
--take back the DEPENDS!!!!Luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Grannyh,
Congratulations on over two years of success with Entocort.
That's a great post. It's chock full of very useful information, especially for newbies who might be wondering about the safety of long-term use of Entocort. Note that I could have used the word "risks", in place of the word "safety", but "risks" sounds negative, and I also happen to believe that Entocort is safe for most patients, for long term use, when used correctly. I hesitate to say "all" patients, because, as you point out, we are all different, and there are bound to be a few individuals somewhere, who will react negatively to budesonide.
To add any of those emoticons to your posts, whenever you get to a spot where you want to place an emoticon, simply click on the link to the left of the messge window, (below the emoticons), that says "View more Emoticons". When the window opens, expand it, (so that it will be easier to view the many, many emoticons there), and just click on the one, (or ones), that you want. They will instantly appear as code in your message box, and the system will automatically activate them, whenever anyone views your post.
You can move them around in your message, if you want, just by cutting and pasting them. If you move or copy them in your mesage, just remember that the leading colon requires a blank space immediately ahead of it, or it will not display correctly, (it will display the code, rather than the emoticon). You can also put them in the subject line, if you want, (that trick won't work on most php boards, but I've modified the code for this board, so that it will work with this one).
Speaking of diapers, I "sweated it out" for a couple of years, but I caved in and bought a package of them, after I had been on the diet for over a year, after a series of "accidents" and close calls. I even carried a pair or two with me, in case of an emergency, but fortunately, I found the key that I needed to fine tune the diet, and it kicked in before I had to use any of them. Like you, though, I still have them, just in case.
Thanks for all the information. There are few things more valuable on this board, than the voice of experience.
Tex
Congratulations on over two years of success with Entocort.
That's a great post. It's chock full of very useful information, especially for newbies who might be wondering about the safety of long-term use of Entocort. Note that I could have used the word "risks", in place of the word "safety", but "risks" sounds negative, and I also happen to believe that Entocort is safe for most patients, for long term use, when used correctly. I hesitate to say "all" patients, because, as you point out, we are all different, and there are bound to be a few individuals somewhere, who will react negatively to budesonide.
To add any of those emoticons to your posts, whenever you get to a spot where you want to place an emoticon, simply click on the link to the left of the messge window, (below the emoticons), that says "View more Emoticons". When the window opens, expand it, (so that it will be easier to view the many, many emoticons there), and just click on the one, (or ones), that you want. They will instantly appear as code in your message box, and the system will automatically activate them, whenever anyone views your post.
You can move them around in your message, if you want, just by cutting and pasting them. If you move or copy them in your mesage, just remember that the leading colon requires a blank space immediately ahead of it, or it will not display correctly, (it will display the code, rather than the emoticon). You can also put them in the subject line, if you want, (that trick won't work on most php boards, but I've modified the code for this board, so that it will work with this one).
Speaking of diapers, I "sweated it out" for a couple of years, but I caved in and bought a package of them, after I had been on the diet for over a year, after a series of "accidents" and close calls. I even carried a pair or two with me, in case of an emergency, but fortunately, I found the key that I needed to fine tune the diet, and it kicked in before I had to use any of them. Like you, though, I still have them, just in case.
Thanks for all the information. There are few things more valuable on this board, than the voice of experience.
Tex
I'm so glad you are doing so well!!! It's great having a doctor who will work with you and is understanding!
Here's to continual health in the New Year!!
Love,
Mars
Here's to continual health in the New Year!!
Love,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
I second Wayne's response. I'm very grateful for your posting. I'm back on 6 mg. of Entocort a day because I began having problems within 2 weeks of decreasing to 3 mg. 
Things are improved again, but I've been concerned that I might never be able to get off the Entocort. You've not only given me hope, you've also made me feel it's OK if I have to be on it for longer than a few months.
Things are improved again, but I've been concerned that I might never be able to get off the Entocort. You've not only given me hope, you've also made me feel it's OK if I have to be on it for longer than a few months.You never know what you can do until you have to do it.
Gloria.. I am happy to hear I have put your mind at ease about entocort but I would be remiss if I didn't clarify it some. I am OLD.. decades past child bearing age:) So when the doctor said he had no problem with me staying on entocort for another 20 years or so... (I plan to get really really old).. there are no risks to any unborn children. I have no idea how old you are.. but personally, I would want to make sure my system was clear of any steroid medication before I would consider getting pregnant.
Entocort has given me my life back and for that I am truly thankful!
grannyh
Entocort has given me my life back and for that I am truly thankful!
grannyh
I have thought about getting some tests done again. I'm taking meds for osteoporosis and for cholesterol. I have a feeling that my new diet restrictions may have reduced my cholesterol. I'm no longer eating any trans fats, dairy, or eggs, for example. I know that cholesterol is influenced largely by genetics and not as much by diet, but I still wonder what the impact has been.
I also wonder about the osteoporosis. I had a second bone density scan a couple of years ago. The osteoporosis likely was an auto-immune reaction. I don't know if it would reverse itself with a dietary change, however. The meds are supposed to reverse it, but only while you're on it. Of course, a steroid also can cause osteoporosis.
Have you had a bone density test?
I also wonder about the osteoporosis. I had a second bone density scan a couple of years ago. The osteoporosis likely was an auto-immune reaction. I don't know if it would reverse itself with a dietary change, however. The meds are supposed to reverse it, but only while you're on it. Of course, a steroid also can cause osteoporosis.
Have you had a bone density test?
You never know what you can do until you have to do it.
I get a bone density test every year and have for about 7 years. One year I had bone gain while on NOTHING to help with osteoporosis.. very strange. I am on Miacalcin nasal spray. All of the pill forms of osteoporosis drugs made me ill one way or another. This past year I had more bone loss... go figure.
My cholesterol is very high and I tried diet to control it but the GP decided years ago it has to be hereditary in my case. My good cholesterol is unusually high so the doctor isn't too worried. I take Crestor since the GP feels it is safer on my intestines. The cheaper and generic cholesterol meds all have warnings about gastric problems.
I have blood work done about every six months to check for cholesterol and all of the other stuff to make sure everything is OK.
grannyh
My cholesterol is very high and I tried diet to control it but the GP decided years ago it has to be hereditary in my case. My good cholesterol is unusually high so the doctor isn't too worried. I take Crestor since the GP feels it is safer on my intestines. The cheaper and generic cholesterol meds all have warnings about gastric problems.
I have blood work done about every six months to check for cholesterol and all of the other stuff to make sure everything is OK.
grannyh
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Grannyh,
Great to hear from you especially with good news to report and so glad your doing so well.
Love,
Joanna
Great to hear from you especially with good news to report and so glad your doing so well.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Five years ago I was a very depressed old lady going through a package of diapers every other day. Numerous trips to the emergency room for rehydration where I was treated like dirt.. they tried to get me to admit I was an alcoholic (I don't drink..ever) or that I was just stupid for not drinking enough water. I also had a series of doctors who thought I was in serious need of a shrink since they said my problem was stress induced..my husband had just lost his job.
In January of 2003 I got my diagnosis of collagenous colitis but that didn't help much cause they didn't know how to treat it other than with steroids and I refused them.
I found the precursor to this site and finally found hope! I muddled along til I started to see the gastro doc my daughter in law used when they lived here... took me another year to agree to take entocort... it has been nothing but improvement since.
I am sure I would have really needed a shrink if I hadn't found this site:)
grannyh
In January of 2003 I got my diagnosis of collagenous colitis but that didn't help much cause they didn't know how to treat it other than with steroids and I refused them.
I found the precursor to this site and finally found hope! I muddled along til I started to see the gastro doc my daughter in law used when they lived here... took me another year to agree to take entocort... it has been nothing but improvement since.
I am sure I would have really needed a shrink if I hadn't found this site:)
grannyh