Even though my user name is still bevfromwa, now that I'm living in Walnut Creek, CA, it seems easier to not have to change it.
I finally decided to try a new GI since there are a lot more doctors here than in Sequim, WA. I'd been experiencing lots of D for quite a while. The new Dr. put me on Apriso, 4 a day, and (what do you expect when one of the side effects is D) I did not tolerate it at all. First he said give it 2 weeks, after that time I was much worse, called again, and now he's got me on 2 a day entocort. Said I should continue Apriso for 5 days while adding entocort, then discontinue Apriso. After a few days I am much better, but still have a big way to go to achieve remission. (you know, that elusive condition we all hope for!)j I notice that he has written it for 2 renewals, 60 pills each, 30 day supply.
I don't know what his plans are, I have a follow-up in a couple of weeks, but when I first saw him he said he wouldn't consider entocort, it is only good for about 30 days, Apriso is much better, a new med, fewer side effects. (right!) I've never been on entocort before, but know lots and lots of members have taken it, and I've read a lot of posts about it, and the necessity of doing a long taper.
Not that I'm trying to 2nd guess my Dr., but want to be prepared to discuss it when I see him and find out what he plans. He did do a bunch of fecal studies, all negative, and said if all this doesn't work "we might have to have a look at your colon!" Since I'm now 81, not sure how safe that might be, but guess I'll cross that bridge when and if need be.
Any input that might arm me for my next visit will be appreciated. I know Polly and others have had success with bile acid binders, and wonder about that for me. (if entocort doesn't work out)
A personal note, those of you who have known me for the 8+ years I've been a member might remember that my husband died in September, 2016. I
sold my house and moved to CA to be near my daughter & sil who live in San Francisco, and my sister who lives in Benicia, CA, in September 2017. It's been hard, but I think it was a good move for me, am in Rossmoor, a 55+ facility of nearly 10,000 people. I'm pretty much settled in now, and even have a nice little garden on my deck.
Thanks, Beverly
Need help with my new ( 3rd) GI and meds he's prescribed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Beverly,
Apriso is just mesalamine. It didn't work very well when it was called Asacol, or Pentasa, or Colosal, or Salofalk or any of umpteen other mesalamine-based medications over the years, and there's no reason to believe that mesalamine is likely to work any better now.
Budesonide in the form or Entocort or Uceris is the preferred treatment these days. But when you're using a corticosteroid, you need to always start the treatment at a full dose and go down from there. That makes me wonder how much he actually knows about treating IBDs. His drug rep may be dictating the treatments he chooses.
In my opinion, when a drug is causing the very symptoms it's prescribed to treat, it should be stopped immediately, not next week. Your doctor seems to have forgotten the Hippocratic oath.
A number of members have had additional colonoscopies because their doctor was lost. I can't say for certain that he won't find anything, but I don't recall anyone ever posting where the doctor actually found anything new during the exam. It's always a waste of time and money for the patient or their insurance company. And a colonoscopy is definitely not without risk (for the patient — the doctor gets paid regardless).
If it were me (assuming budesonide brings remission), I would try to stay on a minimal dose of budesonide. If you can't get a prescription renewal, then when the budesonide runs out I would try cholestyramine before I even considered any of the immune system suppressants. But that's just my opinion.
Tex
Apriso is just mesalamine. It didn't work very well when it was called Asacol, or Pentasa, or Colosal, or Salofalk or any of umpteen other mesalamine-based medications over the years, and there's no reason to believe that mesalamine is likely to work any better now.
Budesonide in the form or Entocort or Uceris is the preferred treatment these days. But when you're using a corticosteroid, you need to always start the treatment at a full dose and go down from there. That makes me wonder how much he actually knows about treating IBDs. His drug rep may be dictating the treatments he chooses.
In my opinion, when a drug is causing the very symptoms it's prescribed to treat, it should be stopped immediately, not next week. Your doctor seems to have forgotten the Hippocratic oath.
A number of members have had additional colonoscopies because their doctor was lost. I can't say for certain that he won't find anything, but I don't recall anyone ever posting where the doctor actually found anything new during the exam. It's always a waste of time and money for the patient or their insurance company. And a colonoscopy is definitely not without risk (for the patient — the doctor gets paid regardless).
If it were me (assuming budesonide brings remission), I would try to stay on a minimal dose of budesonide. If you can't get a prescription renewal, then when the budesonide runs out I would try cholestyramine before I even considered any of the immune system suppressants. But that's just my opinion.
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.
Tex, I can't imagine how you manage to post replies and help 3,406 users, but we all certainly appreciate your doing so!
I won't know what his plans are for me until I see him on Feb 8, but I want to learn as much as possible about my options. I noticed that NIH has an article about the use of entocort for MC.
Is there any information available, maybe in previous posts, as to what our members who have used entocort have found to be doses that worked for them? I think that kind of information would be valuable.
Thanks again, Beverly
I won't know what his plans are for me until I see him on Feb 8, but I want to learn as much as possible about my options. I noticed that NIH has an article about the use of entocort for MC.
Is there any information available, maybe in previous posts, as to what our members who have used entocort have found to be doses that worked for them? I think that kind of information would be valuable.
Thanks again, Beverly
I was hoping that someone else would reply to this, but I don't see anything happening, so here is my opinion. There are a few scattered posts about 6 mg not working while 9 mg was effective — but without published medical proof, virtually all GI docs are going to feel insulted when you try to tell them how to treat anything. They feel that the "Specialty" certificate that the State granted to them makes them an expert on all gastrointestinal diseases and their treatment. While a GP will often listen to suggestions, specialists usually consider that to be beneath their dignity. You would have to have the persuasiveness of a con-artist and the diplomacy of the Pope to convince most GI specialists to drastically change their approach to treating any disease (IMO). I could be wrong, of course.
IOW, I think that you would be more likely to be successful if you just asked for the treatment you wanted (in a diplomatic way, of course), rather than to try to prove that a treatment choice worked or you otherwise tried to "educate" a GI specialist. If you just ask for a treatment, that takes the responsibility off him in case the treatment fails. Of course, if he hasn't had very many MC patients, he may not realize that most medical treatments fail when treating MC.
Tex
IOW, I think that you would be more likely to be successful if you just asked for the treatment you wanted (in a diplomatic way, of course), rather than to try to prove that a treatment choice worked or you otherwise tried to "educate" a GI specialist. If you just ask for a treatment, that takes the responsibility off him in case the treatment fails. Of course, if he hasn't had very many MC patients, he may not realize that most medical treatments fail when treating MC.
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.