Just needed to rant a little bit about my follow-up with my G.I. this morning (at UCLA Medical). First of all, I have to say I think he is good at what he does (he's about 70 and has had a lot of experience with colonoscopies, diagnoses, etc.), but he's pretty old school and not open-minded about the role of diet in MC at all. I just wanted to write up a couple of his comments in case it gives any of you a chuckle.
I told him about my stool test at Enterolab and my gluten- and casein-sensitivities. His reply: "There's no need to exclude those from your diet unless you want to for other reasons. We tested you for celiac and you came back negative. There's no reason to suspect gluten sensitivity. That science is unproven."
My student insurance runs out in September, so I asked him about a cheaper generic form of Entocort. His reply: "There is no generic because the drug is too new." He had no idea how much it costs -- $30 for a monthly supply at full dose with my insurance, over $500 without insurance. I told him that, and he couldn't believe it and looked it up on his Blackberry. When he found it, and confirmed the price, he mumbled "That's *** ridiculous." I was surprised he didn't know how much it costs!
It's so frustrating going to see a doc! The "Entocort" from Canada is generic, right, and people on this forum have used it successfully?
Thanks for listening. Just wanted to rant a bit and get confirmation that I'm doing the right thing. My distrust in doctors is growing (except you, Polly ;o)
Just had follow up with G.I. Doc, ugh, doctors!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
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not good .......
after an appoinment like that you really want to hand them Polly's Kiss sheet and ask them - have you ever had D that lasts more than a day, keeps you a prisoner to your toilet for weeks (for some months) ??
That is the science behind eliminating certain foods and ingredients! dont eat the foods, no D
i think with doctors visits, via this site and our management techniques we feel confident and in control. 15 mins with a so called professional care giver who will not embrace 'what is working'
hope you can sort out the entocort thing...
Stick to what works for you!
after an appoinment like that you really want to hand them Polly's Kiss sheet and ask them - have you ever had D that lasts more than a day, keeps you a prisoner to your toilet for weeks (for some months) ??
That is the science behind eliminating certain foods and ingredients! dont eat the foods, no D
i think with doctors visits, via this site and our management techniques we feel confident and in control. 15 mins with a so called professional care giver who will not embrace 'what is working'
hope you can sort out the entocort thing...
Stick to what works for you!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
For your GI
Unproven! A lot of us have proved it, especially Polly.Polly's TA DAAA letter, too.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Your GI doc sounds like a "classic". He's right, of course - that science is indeed "unproven" by scientific standards, but I for one, am not going to hold my breath, nor am I going to live with chronic diarrhea, waiting for them to get around to proving it. It's pretty clear that they're not in any big hurry to update their outdated beliefs.He's also correct about the generic Entocort - it does not exist, at least not in this country. The generic sold by the Canadian pharmacies is made by Sun Pharmaceutical, based in Mumbai, India. Sun Pharma makes many generic and brand name drugs that are distributed in the United States, Europe, Asia and worldwide. The generic budesonide, of course, cannot be legally sold here in the States.
Yes, several members here are using it, and they seem to be quite happy with it's performance. You can also buy genuine branded Entocort EC from Canadian, or overseas pharmacies, for a fraction of the cost at U. S. pharmacies. For example, this site:
http://www.inhousepharmacy.com/digestive/entocort.html
sells a 30-day supply, (90 capsules), for $175. That's still about 4 times the price of the generic product, though.
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.
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Joefnh
- Rockhopper Penguin
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Gowest that's not encouraging that he does not recognize the role of diet in treating this disease. I had a similar issue with my first GI doc, and after asking for my records, ended up with a very good one at another group. This doctor actually handed me 2 write-up's, one that discussed CC in detail including the role of diet and another for Crohns disease. The Crohns article did not really address the diet though.
Best of luck with this, I hope you are able to source a generic version of Entocort. I wonder how much longer in the US until a generic can be sold.
--Joe
Best of luck with this, I hope you are able to source a generic version of Entocort. I wonder how much longer in the US until a generic can be sold.
--Joe
Joe
Joe,
The first patent expires on May 15, 2011, and other companies will probably try to begin manufacturing a generic version of budesonide, then. IOW, May 15, 2011 is the earliest possible date. However, things such as lawsuits, or other patents for specific uses of Entocort EC may push the date way past 2011. For example, AstraZeneca holds another patent on Entocort EC, which expires on Jan 1, 2015. Depending on what the patent covers, it could push the expiration to that date, and any current litigation could extend it even further into the future.
Many people mistakenly believe that budesonide is a generic form of Entocort EC, but that is obviously not correct. Budesonide is the active ingredient in Entocort, and the patents apparently cover both the budesonide, and the method of encapsulation, which is defined by Entocort EC.
Tex
The first patent expires on May 15, 2011, and other companies will probably try to begin manufacturing a generic version of budesonide, then. IOW, May 15, 2011 is the earliest possible date. However, things such as lawsuits, or other patents for specific uses of Entocort EC may push the date way past 2011. For example, AstraZeneca holds another patent on Entocort EC, which expires on Jan 1, 2015. Depending on what the patent covers, it could push the expiration to that date, and any current litigation could extend it even further into the future.
Many people mistakenly believe that budesonide is a generic form of Entocort EC, but that is obviously not correct. Budesonide is the active ingredient in Entocort, and the patents apparently cover both the budesonide, and the method of encapsulation, which is defined by Entocort EC.
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.
Ratz, Gowest!
It is so discouraging to me that, 10 years after my own diagnosis, University Medical Center GI docs still don't know beans about MC. Luckily, those of us who use the internet and have the courage to design our own treatment programs can learn how to manage our MC. But it upsets me so much to think of all those who aren't so lucky. I just wonder how many MCers might be out there who are housebound from uncontrollable D, misdiagnosed as IBS or "mental" problems, depressed, taking "big gun" meds like prednisone and Imuran, are too timid to challenge their docs, and have been told that diet is worthless. I think what bugs me the most of all is when an MCer has actually experienced significant improvement with diet, and when this is reported at a followup appt., the doc says to discontinue the diet because it won't help. That has happened to people here. Can you imagine???? Even in the face of demonstrated success! Now that is what I call a closed mind.
WOW! You got me on my soapbox, for sure! Thanks for sharing. We can only hope that things will improve.............
Love,
Polly
It is so discouraging to me that, 10 years after my own diagnosis, University Medical Center GI docs still don't know beans about MC. Luckily, those of us who use the internet and have the courage to design our own treatment programs can learn how to manage our MC. But it upsets me so much to think of all those who aren't so lucky. I just wonder how many MCers might be out there who are housebound from uncontrollable D, misdiagnosed as IBS or "mental" problems, depressed, taking "big gun" meds like prednisone and Imuran, are too timid to challenge their docs, and have been told that diet is worthless. I think what bugs me the most of all is when an MCer has actually experienced significant improvement with diet, and when this is reported at a followup appt., the doc says to discontinue the diet because it won't help. That has happened to people here. Can you imagine???? Even in the face of demonstrated success! Now that is what I call a closed mind.
WOW! You got me on my soapbox, for sure! Thanks for sharing. We can only hope that things will improve.............
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Non Celiac Gluten Sensitivity from a GI doc
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Dear Gowest
For 8 months I have been taking the Indian made Budez CR (CR stands for controlled release - same action as entocort). It works for me.
I agree with Polly. I keep thinking of all the unnecessary suffering caused by lazy thinking (or worse) in mainstream medicine.
Hope you find a way through the medical maze!
Best wishes, Ant
For 8 months I have been taking the Indian made Budez CR (CR stands for controlled release - same action as entocort). It works for me.
I agree with Polly. I keep thinking of all the unnecessary suffering caused by lazy thinking (or worse) in mainstream medicine.
Hope you find a way through the medical maze!
Best wishes, Ant
Thanks everyone for the replies. I'll look into the suggestions for Canadian Entocort and get that sorted out.
Joan, great article -- I bookmarked that one.
Joe, it sounds like you have a fairly open-minded doc now. I just got a referral today for a new GI doc in San Diego (I just moved here after graduation) that sounds pretty good. He is interested in diet's role and has actually referred people to dietitians!
Polly, I can't believe a doc would say to discontinue diet in the face of success!! Maybe he's thinking it's just too cumbersome of a thing to do for the "unproven-ness," but sheesh!
Diane, a cancer drug!? I wish you the best of luck with your appointment on Tuesday!
Off topic, my mom thinks living in Los Angeles was a huge stressor for me and now calls it "Los Colitis." LOL
Joan, great article -- I bookmarked that one.
Joe, it sounds like you have a fairly open-minded doc now. I just got a referral today for a new GI doc in San Diego (I just moved here after graduation) that sounds pretty good. He is interested in diet's role and has actually referred people to dietitians!
Polly, I can't believe a doc would say to discontinue diet in the face of success!! Maybe he's thinking it's just too cumbersome of a thing to do for the "unproven-ness," but sheesh!
Diane, a cancer drug!? I wish you the best of luck with your appointment on Tuesday!
Off topic, my mom thinks living in Los Angeles was a huge stressor for me and now calls it "Los Colitis." LOL