afraid to try entocort

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Andi
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afraid to try entocort

Post by Andi »

My name is Andi and although I have had microscopic colitis for about 6 years, I have only recently been diagnosed (Aug. 21, 2008). My symptoms would go into remission for months at a time, but since Jan. of this year have been pretty constant. I have good days, and bad days. It does interfere with life, and with my job which requires hours of looking for insects in trees in the woods.
I have been on Asacol for about 6 weeks and so far it does not seem to be doing much good. My doctor wants me to try entocort, but I am very hesitant to do so. I am the type of person who really does not like taking drugs, and other than alcohol in moderation I live a healthy lifestyle (exercise regurarly, healthy diet,etc...). The thought of taking a steroid scares me. I am afraid of possible side effects, and since I have osteopenia (pre-cursor to osteoprosis) I am afraid of entocort causing osteoprosis.
I am wondering if anyone can tell me of their experiences, and if they have had any side effects.
Thank you. I am thrilled to have found this board, for once i dont feel so alone.
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Courtney
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Post by Courtney »

Hi Andi,

Like you, I was really freaked out about trying a steroid, but my doc insisted, and after five years of constant symptoms, I was ready to try anything. I'm on the sixth week of an eight week course of 9mg of entocort. have not had the bloating and weight gain that one tends to think of with steroids. I have had a couple of joints swell periodically, and I've noticed that I'm thirstier than usual, but those are really all the side effects I've noticed (although I probably wouldn't notice bone loss or other internal damage that quickly). I also avoid taking medicine if at all possible, and I plan to use the entocort only as much as I have to to get my symptoms under control. My goal is eventually to manage MC through diet alone.

Like you, I try to live a pretty healthy lifestyle, (I've also been a vegetarian, though I have eaten eggs, dairy, and fish, for several years), and I suppose one of the challenges for people like us is that many of the things we know are healthy (fiber, raw fruits and veggies) for most people can make our MC much worse. It may require us to rethink our notions of "healthy" and realize that we have different food needs than others. Eggs and dairy are probably out for me, now, for example.

Good luck as you make your decisions. Please don't hesitate to ask if you have any more questions about Entocort.

Courtney
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Babsey
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Post by Babsey »

Hi Andi.

I have had MC since May of this year. I tried Colazal for 10 weeks and Lomotil for about three weeks and neither helped. I also, have osteopenia and am hesistant to try any type of steroid. Right now, I'm trying to just see if i can get any relief from diet alone. I haven't made a decision yet about trying the steroids.
It's really a difficult decision, since I don't want any serious side effects (I'm 39) that are non-reversable and I'm not sure if I will have a reaction or not.

It's frustrating, but there is alot of info on this forum. Either way, I'll be interested in what you decide to do.

Be sure to keep us posted.
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barbaranoela
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Post by barbaranoela »

Greetings Andi---I also suffered with MCC and I didnt have good results with Asacol----matter of fact not to many things helped---thus I HAD to go on pred. for a bit and then Colazal was the meds. that helped me gain remisssion---

I understand how frustrating U have to feel but as been said (what works for one--doesnt neccessarily work for another)and damned if U do and damned if U dont!!! caught in that catch 22 situation--
And understand the worry about your *bones* cus I also have been termed osteo. (years back) but up to this point my check ups have remained--unchanged~~~

Many have found Entocort to be of great help----have U checked that meds with your GI?
Dont let frustration take over--this disease is like a *give and take* game---

Please do let us know how and what else U might plan to do--



:bigbighug:
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Andi
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thank you

Post by Andi »

Everyone is so helpful and friendly and really seems to care for each other. I am appreciating everything everyone is telling me.
Taking a steroid is a really hard decision and since I have only known i have MC for a little over a month, i need to really think about it for a while. Hearing of other experiences is the best way to learn.
I have so many questions, i did not know MC existed until recently and i am just learning. I have more questions i am going to post, but I want to hear as much about the asacol as possible as well.
Thank you for being so kind and helpful.
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barbaranoela
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Post by barbaranoela »

Hi again Andi-----
I did want to relate the Xperiences I had with Entocort----In just talking it for 2 days I developed neurological issues which scared the hell outta me--

My speech started to slur and my walking lopsided---I needed the walls to keep me balanced or my other half (louie) to walk with me--
Naturally this occured on a weekend but I did get a call back from my GI's take over and when he heard my symptoms he said *stop--NOW*
Came Monday my GI called to see how I was and at that point I was fit as a fiddle --so no need to rush into the city and be checked--IF symtoms were still present --than it would have been into the hospital~~~~

Barbara
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Andi
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Post by Andi »

Barbara,
Thank you for telling me about that. Do you know if that is a something that is somewhat common or not?
I am glad you were ok, it sounds like entocort affects different people in different ways. It does make me nervous to try it without knowing.
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tex
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Post by tex »

Hi Andi,

Welcome to our online family, (we consider ourselves a family, because no one truly understands MC unless they have it, so everyone here understands what you are going through).

There is a lot of information on this site that you can read, to get all the details, but in a nutshell, there are basically three ways to control the symptoms of MC, and get your life back.

1. Meds
2. Diet
3. A combination of meds and diet

As has already been pointed out, we are all different in our responses to various meds, because meds are developed for "normal" people, and once you have MC, you are no longer normal, at least your digestive system is not. Asacol can be very slow to bring remission, (and, of course, for some it does not work at all), but some members have good results using it as a maintenance med, after they achieve remissison. Entocort is generally the most effective, relatively safe med that is available to treat MC. It generally has about a 60 to 70 % sucess rate, with only a few percent of patients reporting serious adverse events, (such as Barbara told you about). Budesonide, (the active ingredient in Entocort EC), is much, much safer to use than the classic corticosteroids, (such as prednisone), because it is encapsulated, so that it only becomes activated when it reaches the lower third of the small intestine, (the ilium), and the colon. That means that only about 10% of it is absorbed into the bloodstream, where it can have the systemic effects that cause other corticosteroids to have such a bad reputation. Even at those low serum levels, it can still have limited effects on the adrenals, and other organs, but the long-term risk of adverse events is greatly reduced. IOW, the majority of MC patients who use Entocort, are very satisfied with it's performance. Unlike prednisone, Entocort can safely be used for long-term control of symptoms, at a reduced dosage level. Some MCers prefer to use one of the 5-ASA meds, (Asacol, Colazal, Rowasa, Pentasa, Lialda, etc.), for a maintenance med, in order to avoid the use of a corticosteroid, and many have had good results with them. Recently, however, it has come to light that for a small percentage of users of some of the 5-ASA meds, long-term use can lead to chronic pancreatitis, (inflammation of the pancreas).

The diet, of course, eliminates the risks associated with the use of any med, and many members here control their symptoms by diet alone. The problem, of course, is that it causes a significant lifestyle change, since many foods may have to be eliminated from the diet, depending on just which food intolerances you happen to have. Also, in your case, sticking with a vegetarian lifestyle might not be possible if you choose the GF diet. It might depend on whether or not you are soy intolerant. Many of us are. I'm sure you are aware that getting enough protein can be just about impossible without soy, especially if you should need to cut out other legumes. We have several members who have been in that position, who might be able to offer some insight.

For some of the most severe cases, meds will often allow remission to be achieved faster than using the diet alone, and some members find that by cutting out certain foods, it is easier to maintain remission with a low maintenance dose of their preferred med. Everyone decides which type of treatment plan will best suit their lifestyle, and their issues, and then they fine-tune it.

I've never taken any meds to control my MC symptoms, so I can't offer any insight based on experience, there. Again, welcome to the board, and please feel free to ask any questions. You don't have to worry about grossing us out with any gory details - we've all been there, done that, and we've learned by personal experience, that MC can be a very humbling disease, to say the least.

Tex
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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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Post by Gloria »

Andi,

When my GI first prescribed Entocort, I didn't fill it for about 3-4 weeks because I was concerned about the same issues that you are. I had hopes that eliminating gluten would do the trick. When I didn't see any improvement from a GF diet, I had to seriously consider taking the Entocort.

I have osteoporosis and I believe that it was caused by eating gluten. Autoimmune diseases are known to cause osteoporosis. I finally decided that it would be better in the long term to conquer this disease even if I had to take Entocort so that I could focus on determining my food intolerances. I would recommend it to anyone, as long as they don't have a bad reaction to it.

Entocort is not a systemic steroid, meaning that 90% of it stays in the colon; only 10% reaches the rest of the body. It's much easier on the body than Prednisone. I've had bad side effects from Prednisone, but I didn't have any that I know of from Entocort.

I expected that I would only need to be on Entocort for 6 months and then my diet would take over. What actually happened is that I was on it for about 14 months before I finally figured out all of my intolerances. I stopped taking Fosamax about 6 weeks ago because I have concerns about how it works. I'm relying on an exercise program to do the job. I'm planning on getting another bone density test in a few months to see how I'm doing. I'll post my results after I have the test.

Good luck with your decision.

Gloria
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Andi
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Post by Andi »

I am learning so much from everyone.
It seems that it is going to take a lot of time and effort to try to figure this out. How do you all find the energy with jobs and families and lives? It seems overwhelming right now.
I am hesitant to take drugs for the reasons people mentioned. I am on asacol, but only about 6 weeks. I did read earlier about possible pancreatic problems later. I got MC because i was taking ibuprofen regurarly for about 6 years for an athletic injury. I dont want to take another drug long term for the MC that i got from the ibuprofen, just to get something even worse down the line from the drug. It seems like a chain that never ends.
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Post by tex »

Andi,

The risk of pancreatitis shouldn't be a serious consideration until after you've take Asacol for more than a couple of years. Short-term use shouldn't present any significant risk.

Gloria brought up an interesting point that needs to be emphasized. Osteoporosis is a serious problem for untreated celiacs. However, after they cut gluten out of their diets, bone density loss virtually always stops. The only exceptions are celiacs who are unresponsive to the diet, and many of them are unresponsive because the have an undiagnosed case of MC. Once the trigger foods are cut out of the diet, bone density loss should cease, (unless other, uncommon issues are involved). IOW, if you are concerned about osteoporosis, you should adopt the GF diet, even if you do not plan to fine-tune it by cutting out any other food intolerances that you might have. Gluten sensitivity is almost certainly the cause of your osteoporosis problem. The only other possibility that I can think of would be a deficiency of testosterone in your blood, and that's easily checked with a simple blood test.

Tex
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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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Post by harvest_table »

Andi wrote: I got MC because i was taking ibuprofen regurarly for about 6 years for an athletic injury. I dont want to take another drug long term for the MC that i got from the ibuprofen, just to get something even worse down the line from the drug. It seems like a chain that never ends.
Hi Andi, glad you found this group. Alot to be learned here from others with MC. Sounds like you lived with MC symptoms for a very long time before being DX. If you have indeed lived with D for so many years why do you think your long term use of ibuprofen has contributed to this? Just wondering your thoughts on this.

Entocort worked wonders for me. I took it short term, 6 months and adopted a GF diet at the onset and had no problems that were worse than my MC symptoms.

Joanna
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Andi
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Post by Andi »

I have a question for everyone who is on the GF free diet. I have only just begun to study it. However, it seems that gluten is in everything. I have to travel often for my job. How do you eat out in restaurants for work, or for social events? It seems completely overwhelming to me. I have no doubt that GF free would do much good. But, how do you travel for work or personal life, how do you have dinners out with friends? If someone could give me a list of the most common food items with gluten I would greatly appreciate it.
I dont know if this helps. However, I am passionate about eating as much locally grown, organic food as possible. Vermont is very pro-active in this and I am lucky. Do you think this makes a difference? I do trust my local Vermont growers even if they are not organic, which many are. Do you think pesticides may play a role? It all seems very complicated.
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Post by Polly »

Hi Andi and :welcome:

I can definitely relate to your concerns. I was a vegetarian (primarily for ethical reasons) for 12 years before the MC hit. With my multiple food intolerances, it now turns out that I have the genes that do best on the caveman (hunterer-gatherer) diet. Sigh. I had to do a complete turnaround and begin eating animal flesh again.....I try to eat as low on the food scale as possible, with fish and poultry as the main 'meats". The caveman diet gets at least 50% of its calories from fruits/veggies. It is possible to do caveman and use nuts to substitute for most of the meat, I believe. I know Dr. Fine does this (he does eat some fish). Check out the nutritional recs. on his website at www.finerhealth.com. Hopefully, gluten will be your only intolerance.

In retrospect I believe that my veg. diet may have helped precipitate my food intolerances, since I had focused so much on whole grains, legumes, and soy (none of which I can now eat without getting sick). Perhaps I pushed my body's capabilities to digest these things too much??? I'll never know.
Hopefully, gluten will be your only problem. :smile: My MC started after a long course of antibiotics.

Only about 10% of the Entocort is absorbed systemically from the gut. I share your concerns about meds and have been able to manage my MC with diet alone, even with all of my food intolerances. I took asacol initially for about 6 weeks and it did not help.

What do you do with insects? I LOVE them! Heard a talk a few weeks ago at a native plant seminar about a study that has been collecting insects from native trees to see which ones (trees) are the most valuable in terms of the caterpillar biomass collected. The oak tree won! Also heard a fascinating talk the other night about the songs of crickets/katydids.

Looking forward to further chats.

Polly
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Andi
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Post by Andi »

Hi Polly,
Your comments were very helpful. I am not yet at the point where I can tolerate the thought of eating meat. It was not a conscious decision fo rme, one day the thought of eating meat just made me sick to my stomach. I know i should eat it, but I dont think I can do that for now.
It seems sad that we eat what is supposed to be healthy diets of legumes, grains, veggies, and fruits and have these problems. All of the nutrionisits are always telling people to eat more of these, yet here we are with problems. Everything seems topsy turvy to me, what is good is bad and what is bad is good. It will take me forever to understand this all, and all of you are a huge help. Just not feeling alone is a huge help.
A far as insects, i am an entomologist, did my Masters work in Texas on Imported Fire Ants (I am sure Tex can tell stories about those). I have worked for 22 years for the Dept. of Agriculture working on invasive insects of trees in Vermont. I know in Maryland right now you have had Emerald Ash Borer, one of the insects we are most worried about here in Vermont.
I may be forced at some point to take an early disability retirement from my job because of MC. Because of diarrhea and nausea it is hard for me to be out in the woods for hours looking for insects. I dont want to do this, i want to work till natural retirement. I know my job will accomadate all they can, but it is stressful wondering if i will be able to do what is needed. I am sure that adds to the problem as stress is not good for any condition, let alone something like MC.
Cricket/katydids songs are cool, it is wondeful you findt that intersting. Most of my work in college and graduate school was on social insects such as bees, termites and ants. However, for almost 22 years my work has focused on invasive inects of Vermont and New Hampshire (i cover NH as well) forests.
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