UPDATE ON TREATMENT FROM NEW GI

[bevfromwa]

I posted in March that he'd prescribed Apriso which resulted in disastrous results. Then he put me on entocort after 5 days, but only 2 a day due to concern over my osteoporosis, and then in 30 days dropped it to 1 a day. The 2 a day helped a little, but 1 a day did nothing. I tried to get him to do a more standard dose but he refused. So I finally succumbed to his recommendation for a colonoscopy. I fortunately have no problems as a result of it, it's been 12 days now. I was doubtful that I had Crohn's--my research indicated symptoms I don't have. When I came out of the procedure he said I was negative for Crohn's and for ulcerative colitis and to eat a high fiber diet. (wait, what?) He then called in a week to inform me of the biopsy results: inflammation! That was what was said 9 years ago. And he'd sent a script over to Riteaid for Lialda. I refused that because of the Apriso fiasco. I asked for the operative report, arrived today, learned that I have a very turtuous colon (aka long or twisted). That had not been mentioned before. The report also mentioned a retroverted ileocecal valve. The biopsy said collagenous colitis rather than lymphocytic colitis. I had thought that the pathologist in Port Angeles examined very few cells, so might have had it at that time in addition to lymphocytic, and he just didn't find any. (Tex said he was probably late for a golf date!)

During the 9 years I've had 2 series of tests from Enterolab which showed a lot of sensitivities. I've been very adherent to their recommendations. Basically, I've had watery D for 9 years. I did ask for and was given a script for cholestyramine, but found that Humana only has Prevalite available and charged $131 for it so I declined it until I can do more research. I am taking 10 mg Lipitor for stroke prevention, and Prevalite reduces cholesterol, so the 2 drugs may not play well together. I'm in the process of reading Grain Brain right now, and he makes a good case for not getting cholesterol too low. As of January my total cholesterol was 176, HDL 78, LDL 84.

So what now? Press him again on entocort, try to get a 2nd opinion (there are a lot more choices in this area), I'm revisiting the rock and hard place. Re the entocort, I didn't have any side effects during my brief sojourn, but wonder about "moon face", etc. if they happen are they reversible?

And it has been mentioned about antihistamines, so tried them, but can't see that they did anything for me .

Thanks, Beverly

[tex]

Hi Beverly,

I had a torturous colon noted on my colonosopy report, also. My colon was also 1/3 longer than normal which I assume was due to all the bloating.

Your GI doc seems so "behind the times" about treating MC that I wonder if he still lives in a cave. LOL. I believe I would try to find one who actually knows something about treating MC.

It's been shown by research, by the way, that MC can segue back and fourth between LC and CC pretty much at random.

The physical side effects from corticosteroids (moon face, buffalo hump, etc.) slowly fade away after the drug is discontinued.

I hope you can find a better doctor.

Tex

[carolm]

Hi Bev- I took Entocort for 4 1/2 months and never had moonface. I can’t say it would never happen but I don’t recall a lot of people on this site dealing with the moonface side effect that is seen with prednisone and other steroids.
I agree with you that 9mg would be worth a try.

C.

[tommyboywalker]

Entecort (Budesonide) has worked very well for me. I am down to one 3mg capsule a day now, then will be one every other day, then every third day before I think about stopping the drug. A very slow taper is best. I source mine from Alldaychemist as has been mentioned many times on this forum, as it is crazy expensive, even with my insurance.

My GI doctor trained at the Mayo Clinic in Rochester and I asked him point blank and he said that he is NOT concerned about long term effects of Entecort at a marginal dosage, just enough to control symptoms. IF necessary. Your dosage and taper strategy needs to be personally addressed, this is not a "one size fits all" but I'm convinced that a very slow taper is the way to go with this disease.

I think it would be worth it to get a different opinion from another GI doctor. Keep Entecort front and center for options along with diet of course. I am gluten free and dairy free but luckily I can eat pretty much anything else, within reason.

Entecort is an excellent corticosteroid which does not have the side effects profile as a systemic steroid like Prednisone. 3 capsules a day; 9 MG is the standard starting dosage from everything I have read.

Best of luck to you; this is always an adventure!