The Mayo Clinic And Mesalamines

Captain, You basically twisting whatever I am writing into what you want to argue with. Mayo as Killcolitis mentioned is removing people in LONG TERM FULL REMISSION from drugs. There is basically no evidence that maintenance medication has any effect beyond two years in people with no visible inflammation. Never tested in clinical trials. The FDA trials for maintenance meds are 12 months. Caviler would be keeping someone on drugs in total remission for 5 years or more. No drug is risk free.

Do you have copies of their practice guidelines? Have you read them? I would like to see them. My information comes from posts here and speaking directly with someone that visited the Rochester Campus and taken off drugs. Many people post here that were in remission for 5 or more years and taken off drugs.

Most doctors do not follow the guidelines from my own experience or from what people post here with regard to distal disease in remission. Use of rectal meds alone have a evidence rating of A. Oral and rectal combined are an A rating also. Oral alone is below that effectiveness level yet most doctors prescribe only pills.

PDF link to the guidelines:

PDF


I will try that link again if it doesn't work.

What decision do you make when no science(studies) exist? You can read about people here like ilovefood that had a bad flare going off drugs after a long remission AND other that had severe flares while staying on drugs. People with severe mesalimine reactions. I would not be on drugs if I had to pay instead of my insurance. My choice. I would like to go off drugs after 3-5 years in remission. My choice and no real scientific evidence says that is a bad idea.

Maybe you can explain why a doctor would keep someone in remission on drugs forever? He would simply be practicing ancedotal medicine(near voodo), right?

This discussion is so interesting to me, mostly just because I JUST went to Mayo and they had me go off all my 5-ASA meds after a 10 year full remission (scopes showing no acute or chronic inflamation).  I had thought it was just the particular doctor they assigned me, didn't know it was something Mayo was promoting as a whole until I saw this thread.

Just in my opinion, and especially with my results, after such a long remission I supposed it can't be bad to try to lower your meds and see what happens as long as you catch any resulting flare-up right away. I sort of hope Mayo at least took this away from my experience. They agreed I go back on the 5-ASA meds (Colazal) and stay on that for good after flaring from being being off the meds.  I pushed going back on the enemas but after thinking about their advice I will try to keep my final 'maintenance' dose of the enema down to twice a week rather than every night.  So maybe Mayo has something right in their thinking, if not at least to get you to take as little medicine as you need to in order to remain in remission but perhaps not everybody can go off of it all-together. 

I think as long as you get your kidney's and liver tested on a regular basis and deal with any abnormal findings right away the 5-ASAs should be fine. I've been taking them in different forms (Asacol, pentasa, Colazal) for about 15 years and have not had and abnormal signs on my kidney or liver tests. I probably get them tested at least a few times a year.

Yes correct - they told me to stop taking the 5-ASAs and see what happened.  They didn't specifically say to go back on them 'for life', as you said.  But definitely as a maintenance for now.  Can't really plan on anything 'for life' when you have this disease. I think key is to take it day by day and year be year and see how you feel.

Sorry my posts were hard to follow - Prednisone has me a little hyped up right now.

I totally agree and am very disappointed in the treatment I received there. I went there back when I was first diagnosed and received excellent treatment back then.  My brother also had great treatment there and had his J-pouch surgery there back when Mayo was one of the few places performing the surgery.  I'm not sure what has happened to Mayo over the past 15 years.  Granted they did give me a very new doctor - one who I believe was just finishing up his residency (or whatever the last stages of your training are that maybe you get the 'M.B.B.S' designator after your name).  I just really hope, as they used to way back when, they take my case and use it in their research - both to look at the fact that after so many years of remission my colon did look almost 'normal' and what the effect of stopping medication did do to that remission.

Hopefully it can at least help future studies.

AZYooper,

"Captain, You basically twisting whatever I am writing into what you want to argue with."

The words have been yours, young man, not mine. And, please, don't ask me to endorse a decision you've clearly already made to go off of your medications by employing a rationale for doing so that you've managed to concoct after the fact. That's demeaning to you. Surely, you can do better than that.

"There is basically no evidence that maintenance medication has any effect beyond two years in people with no visible inflammation."

What possible requirement would there have to be for "evidence" of the kind you're demanding here when simple common sense ought to be enough even for the most irresponsible practitioner to keep a patient on 5ASAs for the rest of their lives? I mean would you demand enabling science before permitting yourself to eat? And I say this taking at face value - perhaps ill-advisedly - your assertion that there's no science on this question beyond two years. I really don't know whether there is or not, truthfully.

"What decision do you make when no science(studies) exist?"

A conservative, risk-sparing, common sense decision.

"Maybe you can explain why a doctor would keep someone in remission on drugs forever?"

Maybe because he places the highest priority on his patient's best interests.

Post Edited (Captain Ca-Ca) : 1/30/2012 6:15:04 PM (GMT-7)