Hi everyone,
I am engaged in an e-mail "fight" with my gastroenterologist about my use of Entocort. I was diagnosed last April with microscopic colitis (collagenous colitis). I have been taking, since July 27, 2010, Entocort 9mg per day and have tapered down now to 6mg and 3mg on alternate days. I am following a GF and DF diet. I feel fine and everything is in good order except for some fatigue, some weight gain and easy bruising.
The doctor wants to put me on Purinethol 50 mg. He had actually decided to put me on that drug from the onset. I am the one who "suggested" to him that I wanted to be put on Entocort. He is now telling me the following ..... "even though 95% of the steroids are processed in the guts, the remaining 5% may create problems."... "there are no specific tests but he would have to send me to an endocrinologist for in depth evaluation of my adrenal glands as we progess. I may be showing some of the signs of the steroids. He would much prefer to use purinethol as it will obviate these side effects and that is what it was designed to do." .. He continues by saying "I do not recommend this approach (Entocort) and the responsibility of steroid-induced side effects will be yours as they have been explained to you... Please think this over."
I told him that I am still not sure what the negatives are on being on a decreasing dose of budesonide to 3mg per say and about the negative effects he describes. On the other hand, the idea of the use of Purinethol is unsettling to me. Side effects may include hair loss!! It is a cancer drug and I would have to be followed for white cells count, etc.
I am trying to figure out what the general reactions are on this forum about the above. Would anyone comment? Anyone on long-term use of Entocort sufferred from adrenal deficiency (whatever the effects are I do not know).
Thank you in advance for any help on this!
Entocort vs. Purinethol, help!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi, I have been on 6mgs of Entocort for over 3 years and my GI states that he sees no problem with long term use.
The only thing that I do notice is the easy bruising, but I am small and thin skinned so both could be contributing to the bruising.
I have a complete blood workup done every 6 months and so far no problems.
I also have collagenous colitis.
Dee~~
The only thing that I do notice is the easy bruising, but I am small and thin skinned so both could be contributing to the bruising.
I have a complete blood workup done every 6 months and so far no problems.
I also have collagenous colitis.
Dee~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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Joefnh
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Dmarcus it does seem that there is a general resistance by the medical community to use Entocort longer than 6 months due to the perceived risks. Like you I dxd with CC last April and was on Entocort until September when I began to taper off the Entocort and start Imuran but more for the Crohns than the CC that I was also Dxd with in April. The Entocort does not treat Crohns located in the jejunum or middle portion of the small intestine.
The reason I bring that up is that the Imuran is essentially Purinthol (6-MP). Imuran converts to Purinthol in the liver. For me the Imuran does control the Crohns and the CC quite well, but the question is what are the risks / benefits between the 2 choices. Overall the members here do appear to favor the longer term use of Entocort and seem to tolerate it well, but long term use of Entocort is not risk free. On the other side of the coin Purinthol is a direct immune system suppressant that does need to be monitored carefully. I'm sure others will weigh in here, but this will come down to the risks / benefits between the 2 choices.
How are you doing in addressing the dietary aspect of CC?
--Joe
The reason I bring that up is that the Imuran is essentially Purinthol (6-MP). Imuran converts to Purinthol in the liver. For me the Imuran does control the Crohns and the CC quite well, but the question is what are the risks / benefits between the 2 choices. Overall the members here do appear to favor the longer term use of Entocort and seem to tolerate it well, but long term use of Entocort is not risk free. On the other side of the coin Purinthol is a direct immune system suppressant that does need to be monitored carefully. I'm sure others will weigh in here, but this will come down to the risks / benefits between the 2 choices.
How are you doing in addressing the dietary aspect of CC?
--Joe
Joe
D,
Your GI doc is nuts. It's that simple. Anyone who would recommend a leukemia treatment for MC, in lieu of Entocort, when the Entocort is working just fine, with no significant problems, has to be as nutty as a fruitcake, IMO.
We have a number of members who have been taking Entocort for years, with no significant problems at all. In fact, I'm not aware of anyone here, who has been taking it long-term, who has anything bad to say about it. GI docs who are deathly afraid of Entocort, are typically ignorant of how it actually performs in the real world. I would take his advice about thinking it over, all right - I would think it over, fire his ignorant ass, and then locate a new GI doc, ASAP. He does not have your best interest at heart.
Another alternative is to order your Entocort in generic form, from an overseas pharmacy, where no prescription is needed, and where the price is only a fraction of the cost of the name brand product in this country. We have many members here who go that route, mostly because of the price issue. The product performs just as well for most people, as the high-dollar stuff.
Tex
Your GI doc is nuts. It's that simple. Anyone who would recommend a leukemia treatment for MC, in lieu of Entocort, when the Entocort is working just fine, with no significant problems, has to be as nutty as a fruitcake, IMO.
We have a number of members who have been taking Entocort for years, with no significant problems at all. In fact, I'm not aware of anyone here, who has been taking it long-term, who has anything bad to say about it. GI docs who are deathly afraid of Entocort, are typically ignorant of how it actually performs in the real world. I would take his advice about thinking it over, all right - I would think it over, fire his ignorant ass, and then locate a new GI doc, ASAP. He does not have your best interest at heart.
Another alternative is to order your Entocort in generic form, from an overseas pharmacy, where no prescription is needed, and where the price is only a fraction of the cost of the name brand product in this country. We have many members here who go that route, mostly because of the price issue. The product performs just as well for most people, as the high-dollar stuff.
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.
Thank you Tex, Dee, Gabes and Joe. I am now pretty convinced that the motivation for changing me from Entocort to whatever has to do with monetary reasons rather than medical decisions. I am a member of a California HMO and I suspect that someone is looking over the shoulder of some of the practicians... I may be wrong but that's what it looks like!
Diane
Diane
The active ingredient in Entocort is Budesonide.
Budesonide is also the active ingredient in Pulmicort Asthma preventative and Rhinocort nasal allergy spray.
In both these cases, doctors will happily prescribe the product for years without ever mentioning steroid side effects. I was on Pulmicort for, um, at least a decade if not 15 years+ without any suggestion I should come off it. I only stopped because dropping gluten improved my asthma. I was on Rhinocort for years at the same time, (so a double dose) and still no concerns. My other half has been on Symbicort (Budesonide and another asthma drug) for about 4 years now.
There are studies showing long term use of Entocort is associated with bruising, bone thinning and a bunch of other things. The problem is, these are all the same list are associated with IBDs anyway. I have previously found studies saying IBD patients are deficient in vitamins D, B, K and a few others that escape me right now.
Being deficient in Vitamin D will thin your bones. Being deficient in vitamin K will cause easier bruising. Try arguing with the doc to give you a thorough vitamin test first to see if malabsorption is causing the problem, but I don't expect you'll get far.
Or ask him if the real reason is financial pressure.
Lyn
Budesonide is also the active ingredient in Pulmicort Asthma preventative and Rhinocort nasal allergy spray.
In both these cases, doctors will happily prescribe the product for years without ever mentioning steroid side effects. I was on Pulmicort for, um, at least a decade if not 15 years+ without any suggestion I should come off it. I only stopped because dropping gluten improved my asthma. I was on Rhinocort for years at the same time, (so a double dose) and still no concerns. My other half has been on Symbicort (Budesonide and another asthma drug) for about 4 years now.
There are studies showing long term use of Entocort is associated with bruising, bone thinning and a bunch of other things. The problem is, these are all the same list are associated with IBDs anyway. I have previously found studies saying IBD patients are deficient in vitamins D, B, K and a few others that escape me right now.
Being deficient in Vitamin D will thin your bones. Being deficient in vitamin K will cause easier bruising. Try arguing with the doc to give you a thorough vitamin test first to see if malabsorption is causing the problem, but I don't expect you'll get far.
Or ask him if the real reason is financial pressure.
Lyn
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MBombardier
- Rockhopper Penguin
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- Location: Vancouver, WA
Rhinocort???? Now I know why "budesonide" sounds familiar!! My youngest was on rhinocort for a while to get her asthma (which she has since grown out of) under control.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Diane,
I'm pretty sure your hunch is correct. Doctors still make the diagnoses and write the prescriptions, but the insurance companies ultimately determine which treatments will be allowed.
That's why I mentioned the source for a cheap generic form of budesonide:
http://www.alldaychemist.com/1283_Entocort-EC
A 30-day supply, (90 capsules), costs $40.50, plus shipping - no prescription needed, (because prescriptions are only valid in the country where the prescribing doctor is licensed).
Tex
I'm pretty sure your hunch is correct. Doctors still make the diagnoses and write the prescriptions, but the insurance companies ultimately determine which treatments will be allowed.
That's why I mentioned the source for a cheap generic form of budesonide:http://www.alldaychemist.com/1283_Entocort-EC
A 30-day supply, (90 capsules), costs $40.50, plus shipping - no prescription needed, (because prescriptions are only valid in the country where the prescribing doctor is licensed).
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.
I've been on varying dosages of Entocort for 3 1/2 years with no problems. I have osteoporosis, but had it before I started taking Entocort. Some bruising, but also had that b/4 Entocort. Thin-skinned, ditto about having it b/4 Entocort.
Gloria
Gloria
You never know what you can do until you have to do it.
It is really sad that a specialist is actually forced to try to convince a patient to change a course of treatment that is definitely working because of monetary reasons while pretending that it is a better medical course of action. I find this really dishonnest and disturbing... Oh well. I am sticking to what I know. And I guess even if tried to change specialist within the HMO, the other doc would have the same "directives" to follow. So, thank you Tex for the info on getting generic Entocort. I will probably have to go that route if they refuse to refill the prescription... Not a great day. I feel really cheated.
And tomorrow is another day and I really appreciate all the help on this forum!
Diane
And tomorrow is another day and I really appreciate all the help on this forum!
Diane
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Gabes-Apg
- Emperor Penguin
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my cynical minds finds this situation amusuing (thanks for the belly laugh)
disclaimer: I am not laughing at you Diane
on the one hand, unless the doctor can write a script to solve your symptoms they dont feel complete and rarely will a doctor accept diet as a viable treatment
and then on the other we have a patient that the Entocort is working and they wont write the script
the medical services in our countries are like a punch and judy puppet show!
disclaimer: I am not laughing at you Diane
on the one hand, unless the doctor can write a script to solve your symptoms they dont feel complete and rarely will a doctor accept diet as a viable treatment
and then on the other we have a patient that the Entocort is working and they wont write the script
the medical services in our countries are like a punch and judy puppet show!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Diane--
Do you have another doctor who will listen to you? Maybe your ob/gyn, or your primary? I finally had to turn to my psychiatrist to get the proper advice for my MC as my GI would not listen. He is one of the few that refuses to be involved with the drug companies...and he has celiac disease. IMO, you have to sometimes work around the traditional channels to get proper treatment, as our health care system no longer operates in the interest of the patient.
Feeling your pain,
Mags
Do you have another doctor who will listen to you? Maybe your ob/gyn, or your primary? I finally had to turn to my psychiatrist to get the proper advice for my MC as my GI would not listen. He is one of the few that refuses to be involved with the drug companies...and he has celiac disease. IMO, you have to sometimes work around the traditional channels to get proper treatment, as our health care system no longer operates in the interest of the patient.
Feeling your pain,
Mags
Hi Demarcus,
I am trying that protocol right now. My doc recommended that I switch from Entocort to Imuran. I know that others on the board think I am making a bad decision, but I found the arguments for trying it reasonable. One of the important things about this board is the access to the experiences of others.
The arguments that my doc made against long term use of Entocort is that such use increases the risk for diabetes, bone loss, glaucoma, cataracts & GERD. Not a high risk, but not 0 either. Taking Entocort is like taking a small dose of Prednisone. In my family, I have seen the damage that can cause.
Inuran, on the other hand, has been around for almost 50 years and has a good track record. Carefully monitoring blood work every few months (after the initial start-up) it seems to prevent most problems.
I started Imuran almost three weeks ago. Imuran takes about 8 weeks to have a complete impact. We will start tapering off the Entocort in about 5 more weeks. I am hoping for a good result.
Listen to all voices and make the decision that is right for you.
Celie
I am trying that protocol right now. My doc recommended that I switch from Entocort to Imuran. I know that others on the board think I am making a bad decision, but I found the arguments for trying it reasonable. One of the important things about this board is the access to the experiences of others.
The arguments that my doc made against long term use of Entocort is that such use increases the risk for diabetes, bone loss, glaucoma, cataracts & GERD. Not a high risk, but not 0 either. Taking Entocort is like taking a small dose of Prednisone. In my family, I have seen the damage that can cause.
Inuran, on the other hand, has been around for almost 50 years and has a good track record. Carefully monitoring blood work every few months (after the initial start-up) it seems to prevent most problems.
I started Imuran almost three weeks ago. Imuran takes about 8 weeks to have a complete impact. We will start tapering off the Entocort in about 5 more weeks. I am hoping for a good result.
Listen to all voices and make the decision that is right for you.
Celie