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Hi all, I have been trying to achieve remission from my LC by diet alone for 10 months. Although I have tried Prednisone, Pepto Bismol, Boswellia, antibiotics, prebiotics etc. etc., remission has eluded me.
I am a lot better off now that a year ago having 1-3 bm's per day as apposed to 8-12 last year. That, I credit to being GF, DF, EF, Sf, and a few other eliminated food groups. I really hate drugs and have not done well on them over the years. Prednisone gave me severe leg cramps, so I resisted the use of Entocort, opting to control my symptoms through the use of Imodium ( 2-3 per week) However, as Tex has pointed out, this is not helping the inflammation in my gut, and probably is making it worse, so I am taking the next step.
Today I started Entocort (9mg/day). My PCP would not give me a prescription so I had to see my G.I. doc. I have little confidence in his knowledge of MC based on my prior visits with him (anyone else feel that way about their GI doc?) LOL. Sooooooo, I brought several articles referencing Entocort that I downloaded from sites that were recommended here. The best was from the American Journal of Gastroenterology, Dec. 18th edition. He read the recommendations and benefits of the Entocort trials and somewhat reluctantly, I think, agreed to let me try it.
When he asked why I had not been to see him for 11 months, I told him that I had been much better and felt the D would clear up by itself, but that it had begun to worsen lately. Not really a lie but not the complete truth either. Based on the experiences of many on this board, I was not about to tell him that my elimination diet, had taken me this close to remission. Or that I had been tested by Enterlab. Best to leave that sleeping dog lie.
Well this is getting rather lengthy so I'll wrap it up. I am concerned that he will not renew my prescription after the initial six week trial period. Most here seem to take 6 to 12 months on Entocort to achieve remission. Also I was shocked that my HMO required a $122.00 co-payment per month for this drug. (list price is $894.00 per mo.) I am going to check out Wallmart and Costco for their costs. Any suggestions????? I am really excited that this will help me achieve remission. Time will tell.
Hotrod
Started Entocort Today
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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RUBYREDDOG
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Hey Hotrod,
I wish I had some good answers for you. The last time I was on Entocort was in 07. At that time my GI wanted me on it a minimum of 3 mos. and I fought it. She did put me on the 9 mg for 6 wks and then I had to taper down (just like predisone). Hopefully that's what your GI is thinking and you can prove him wrong, if needed. I had good success with this timing but know from other posts that they needed more time. As far as the co-pay goes, that may be about right. Jodibelle had a similar experience a few weeks ago. When I got my prescription in 07 I paid that much or more and my co-pay has gone up since then. Unfortunately there are no generics or substitutes for this, which doesn't help. Also, the current administration is pushing generics for all insurance carriers so this appears to be why you can get a $4 generic prescription but pay through the nose for a non-generic. Good luck on healing as quick as you can.
Jan
I wish I had some good answers for you. The last time I was on Entocort was in 07. At that time my GI wanted me on it a minimum of 3 mos. and I fought it. She did put me on the 9 mg for 6 wks and then I had to taper down (just like predisone). Hopefully that's what your GI is thinking and you can prove him wrong, if needed. I had good success with this timing but know from other posts that they needed more time. As far as the co-pay goes, that may be about right. Jodibelle had a similar experience a few weeks ago. When I got my prescription in 07 I paid that much or more and my co-pay has gone up since then. Unfortunately there are no generics or substitutes for this, which doesn't help. Also, the current administration is pushing generics for all insurance carriers so this appears to be why you can get a $4 generic prescription but pay through the nose for a non-generic. Good luck on healing as quick as you can.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Hotrod,
I fully agree with the way you handled the information transfer with your GI doc. When it comes to discussing food intolerances and diets, with GI docs, I think it's best to follow the now-famous "don't ask - don't tell" policy.
Now that your GI doc has prescribed Entocort for you, I would think that the odds of your GP prescribing it for you would be significantly improved, and hopefully, if your symptoms return after tapering off Entocort, your GI doc will be inclined to renew it, also. (Anyway, I'm hoping that's the case, if you need it).
Best of luck with this venture. Unless you happen to be one of those unfortunate few who are allergic to budesonide, surely this will allow you to make that final step into remission.
Tex
I fully agree with the way you handled the information transfer with your GI doc. When it comes to discussing food intolerances and diets, with GI docs, I think it's best to follow the now-famous "don't ask - don't tell" policy.
Now that your GI doc has prescribed Entocort for you, I would think that the odds of your GP prescribing it for you would be significantly improved, and hopefully, if your symptoms return after tapering off Entocort, your GI doc will be inclined to renew it, also. (Anyway, I'm hoping that's the case, if you need it).Best of luck with this venture. Unless you happen to be one of those unfortunate few who are allergic to budesonide, surely this will allow you to make that final step into remission.
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.
Hi Hotrod,
I think that if you are only having 1-3 BMs per day, you probably can reduce to 2 Entocort per day very quickly, and hopefully to 1 per day soon after. I suspect that you've found your intolerances, but are continuing to eat what I call "irritants." At this point, it doesn't really matter if they are intolerances or irritants; they are giving you the same problem. The Entocort will allow you to fine-tune and determine the last few foods that you need to eliminate.
The list of potential irritants seems to be much longer than the list of intolerances. Some irritants I've eliminated are lettuce, spinach, fresh fruits (other than berries and melons), uncooked vegetables, orange juice, onions (and everything in the onion family), red and green peppers, sweet potatoes, carrots, cashews and canned prune plums. Hopefully, most of these irritants can eventually be added back to my acceptable food list. When I begin to add them, I'll use the rotation method, as I have done with yeast.
I have no doubt that you'll be able to figure out what is keeping you from total remission. Good luck on your journey!
Gloria
I think that if you are only having 1-3 BMs per day, you probably can reduce to 2 Entocort per day very quickly, and hopefully to 1 per day soon after. I suspect that you've found your intolerances, but are continuing to eat what I call "irritants." At this point, it doesn't really matter if they are intolerances or irritants; they are giving you the same problem. The Entocort will allow you to fine-tune and determine the last few foods that you need to eliminate.
The list of potential irritants seems to be much longer than the list of intolerances. Some irritants I've eliminated are lettuce, spinach, fresh fruits (other than berries and melons), uncooked vegetables, orange juice, onions (and everything in the onion family), red and green peppers, sweet potatoes, carrots, cashews and canned prune plums. Hopefully, most of these irritants can eventually be added back to my acceptable food list. When I begin to add them, I'll use the rotation method, as I have done with yeast.
I have no doubt that you'll be able to figure out what is keeping you from total remission. Good luck on your journey!
Gloria
You never know what you can do until you have to do it.
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RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Thanks all for your words of encouragement.
After 3 days on Entocort, I already am seeing some improvements in my bm's and no side effects, yet.
Gloria, I have been following your Entocort experiences as I seem to have most of the same food intolerances. Hopefully I will have the same success that you have achieved, using Entocort. I will have to read up on the rotation method to further identify my food irritants. The only one on your list that I have not eliminated is carrots. I usually have 5 baby carrots as part of my lunch. olives are another potential problem. I'm just taking things a step at a time for now.
Hotrod
After 3 days on Entocort, I already am seeing some improvements in my bm's and no side effects, yet.
Gloria, I have been following your Entocort experiences as I seem to have most of the same food intolerances. Hopefully I will have the same success that you have achieved, using Entocort. I will have to read up on the rotation method to further identify my food irritants. The only one on your list that I have not eliminated is carrots. I usually have 5 baby carrots as part of my lunch. olives are another potential problem. I'm just taking things a step at a time for now.
Hotrod
That's terrific that you're seeing results on Entocort - and no side effects! You should be able to taper down much sooner than most.
I'm still wondering about olives myself. I'm finally at the point where it's becoming much easier to figure out what's causing me a problem. It only took two years... LOL
Gloria
I'm still wondering about olives myself. I'm finally at the point where it's becoming much easier to figure out what's causing me a problem. It only took two years... LOL
Gloria
You never know what you can do until you have to do it.
