Bev..forgot an important thing. One Entocort per day always got me back to normal and after a few months I would wean off and all was well for 1-2 yrs. This time when it hit I took one a day but it barely changed anything. I went to 2 a day a week ago and still not normal. Takes longer for the food to go thru but output is not good at all. I sure hate to waste them by taking 3 a day but have to and then taper off and see what happens. This disease is pure hell.View Thread
I have always been able to take just one Entocort when out of remission rather than the 3 a day recommended and like you would take it every day for the rest of my life. I HAD been in remission for over 2 yrs but guess what reared its ugly head 2 weeks ago? I kept hoping it was just a bad case of 'D' but NOT. It figures that its back since I started to stockpile Entocort 'just in case two months ago because 'unfortunately' my high deductible got satisfied due to breast cancer surgery and I getting every med I can while I have the copay. Before the cancer I decided that next time I would get my Entocort from Canada and have already researched where and how and have testimonials of those with C. Colitis that it works just fine to do this and save over $1000 for 90 day supply.View Thread
WOW and OUCH. Did you know that in many insurance plans the generic Entocort costs more than the brand? I have to pay full price until I satisfy huge deductible so next time I need Entocort I will get them North of the Border.View Thread
Unfortunately even though probiotics are good for many as they make food go thru the digestive process faster .....my Gastro said that is the last thing we with CC or MCC need/ want. I tried it and the doc said "STOP".View Thread
I have heard about that diet change but have never tried it in total During attempts to diagnose me my Gastro took me off wheat and then dairy but no change. Might not have been off long enough. I have never had any type of food sensitivity in my life but that can change of course. Nothing in particular triggers the CC. Entocort works great for me but the expense is horrendous. I commend you as I am not sure I could eliminate all those on the FODMAP list. What you are doing is right in line with the suggestions on this CC forum. YOu might want to join/check it out.
I have had MCC for 6 yrs and nothing comes close to slowing it down except Entocort. DId the 3>2>1 over 3 months. Had 2 short remissions and due to the cost of the drug I decided try something on my own. I took one Entocort and guess what? Stopped the diarrhea in 24 hours. No one will advise me that I can do this as maintenance but I have never had any side effects from this drug so did it anyway for 6 months and weaned off gently. Went into remission for almost 3 yrs but recently it came back. I had some so called expired Entocort but found out from the manufacturer that it has a 3 yr shelf life as long as its kept relatively cool. I tried it and it works fine. Once I am out of my stash or they stop working I am in trouble as I too am on Medicare and have not even found a supplemental script plan that covers Entocort AT ALL at any price. I will be forced to look to other countries and take my chances for cheaper/ generic Entocort. Its criminal that a drug that works so well has to cost many hundreds per month. The manufacturer has us by the you know what and there are no viable alternatives.View Thread