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Got a call this morning from my GI's nurse saying I should continue with 9 mg of entorcort for the next 2 months and set up an office visit to discuss it further. I haven't seen my GI since last fall when I had a colonoscopy. I've been so frustrated with him and haven't told him that I've reduced the dose to 3 mg already. I know I'm the classic bad patient that doctors hate because how can they help if you're not up-front with them? But I find when I do say what's on my mind- I offend them. I am being contradictory in this statement- but I believe in telling it as it is with everything, but I'm not doing that in this situation. Was I wrong to reduce the dosage so soon?
I am comfortable with this dose and feel the rest will be up to me in figuring out what foods are on my safe list. My goal is to manage the MC through diet alone but I have a long way to go and don't want to add to the time by taking higher dosages than necessary. The two months addition may very well be the timeframe recommended in the medical community or maybe just a way of shoving me off for a few more months, I don't know. Currently, I have few stomach gurgles, a visit from Norman once in a while, and loose to watery D 2-3x a day with no night issues so I am content and know it's too soon to go any less than 3 mg/day.
I will have to let him know at my office visit what I have experimented with and tell him I'm taking 3mg, but I wonder if maybe I'm rushing myself by not continuing per doctor's orders. I'm hoping to achieve more Normans by the time I meet with him but also know he remains skeptical of the Enterolab results even though he approved them for me. He's never brought up the topic but I've only talked to him through his nurse. My son's GI did not approve tests for him after speaking with him so I have an idea of what his opinion is.
DebE wrote:Was I wrong to reduce the dosage so soon?
I'm sure he would think so, since you weren't in remission when you reduced the dose.
I sure hope that you're in remission by the time the appointment comes up, or it's going to be tough to defend your position. GI docs would rather see us take Entocort - achieve remission - stop taking Entocort - relapse - start taking Entocort again - etc., etc., since they consider the diet to be a waste of time.
FWIW, I consider what you are doing, (bringing the symptoms down to a tolerable level, but not completely resolving them, so that you can see the effects of your diet), to be a very good plan. Frankly, though, I doubt that the average GI doc would agree, since they can see no logic in what you are doing, (due to their closed-minded thinking).
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.
It sounds like your actually doing much better! Sometimes you have to listen to your body and your gut. Having been on Ento myself to have a patient go 3 months on 9 mg sounds like a long time on a high dose. On 9mg I was having problems with driving..and even remembering my name. It sounds like you have a good positive frame of mind which I think is important to healing! I was on Ento for 4.5 mths and now off for 7 weeks. Keep us posted, Brandy
In the beginning of my treatment, I took 9 mg of Entocort for a few days and developed severe constipation. I decided to cut back to 3 mg once a day and go from there. Interestingly, the D stopped after just one day on Entocort. I started a GF diet a few weeks before starting the entocort but for me the drug was a miracle. I told my GI doc about the change to 3 mg a day when I went in to see him for a 3 month check up. He has no problem with it but also wants me to wean off. I am resisting because of what I have heard here about relapses soon after stopping and then finding the drug less effective the second time around. Although I am very strictly GF, DF and SF I do have gas and gurgles and multiple, mostly normans in the a.m. I am terrified of a flare or return to the nonstop D I had last year. My GI did put me on Caltrate D to protect my bones. IMO, the entocort is allowing me to live a normal life, albeit GF, SF, DF. and I don't want to take a chance of going back to the bad old days of up all night with major D and falling asleep on the toilet.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
You know your own body, and your doctor should listen to you and take what you have to say seriously. There are many doctors who know only one way (or no way) to treat MC and/or celiac and aren't open to discussions about different diets etc. I think it is up to me to stand up for myself and tell the doctor what works for me, what doesn't work and that food is a major issue. Fortunately, my doctor isn't totally close-minded although I don't think he has logged on to our website as I suggested. Hang in there and continue to tell it like it is.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
Hi Deb. I would hope that your doctor would be happy that you are on a lower dose. It's a very individual decision when it comes to how comfortable you are with taking medication and how much D you are willing to live with.
I recently tried to lower my dose from 9mg to 6mg ( after about a week) and it was too soon. Still trying to recover from that, but I definitely want to cut back as soon as I can.
Please let us know how it goes.
Leah
Deb, I was on 9mg a day of Entocort and my doc wanted me to reduce to 6mg after about 6 weeks. I was the one who was resistant and talked her into letting me stay on 9 mg for another 2 weeks until I got back from a conference that was out of state. After that I reduced to 6mg and stayed there for another 5 weeks, then went to 3mg daily for 2 weeks, then 3 mg every other day for 5 days. So... I guess what I'm saying is that there doesn't seem to be any hard-and-fast rules about the amount of time a person should stay on Entocort. My Dr. would have preferred I stopped sooner, like within 10 weeks after I started. I can see now that they were right. Some of the problems I was having, like colon spasms, turned out to be a side effect of the Entocort and not a symptom of LC.
If you are comfortable and making progress with the dose you are on now ---- then why fight success??
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Visit the Microscopic Colitis Foundation Website
I'm sure he would think so, since you weren't in remission when you reduced the dose.
Hang in there and continue to tell it like it is. 