Discontinuing Budesonide

[tex]

Hi Steve,

Yes, beta-blockers have been associated with MC by some research, but that association has never been proven by any cause and affect research, as far as I'm aware, so it may just be coincidental. At any rate, the percentage of associated cases is low (in the low single-digit range, as I recall). That said, I've used metoprolol personally, years ago (because I'm a stroke risk). I stopped using it after about a year, because my heart rate was getting to be too low (in the 50's, and occasionally the 40's). If I hadn't been taking magnesium, that might not have been a problem, but magnesium lowers the heart rate, also. I do just fine without metoprolol.

I continue to take a minimum dose of lisinopril (10 mg), but many people have problems with it, such as a persistent unproductive cough, or in a few cases, epileptic-like seizures. I have a relative who suffered for years, and lost several good jobs, because of seizures caused by lisinopril, before he discovered the cause. His doctors didn't have a clue.

Tex

[Steve43]

Thanks, Tex. I am continuing to wean off the Metoprolol. It seems like a golden opportunity to eliminate it. My heart rate was in the 50’s as well. It was to control palpitations. Since I have been retired for 1.5 years I think I won’t need a BP med any more, but I will be studying my BP for 2 weeks once I am fully off the Metoprolol. Have been on Budesonide for 1 week, since I found your site and am reading your book, my first day of going GF today. Thank You for sharing your story and this site.

[Watercolorist]

Need offer comments that may help with my Budesonide taper experience. After taking the 9 mg dose daily for 4 weeks, I went to 2 mg / day for 4 weeks.
I was confident diet and Rx combined were going to be successful because my poop was between 4-6 consistently and the urgent trips to relieve myself became a thing of the past….. also, I slept through the night!
Then I began taking only 3 mg / day. I was ok on the 3 mg for a while. Level 4-5 on the poop scale. Then after about two weeks, I began my longer taper. I took one Budesonide every other day. Seemed ok for 1-2 weeks, but was a qualified ok. Yet, I needed to be assured I could continue with my Budesonide taper so I began to take o3 mg every two days. My body reacted with a return to runny mushy D or infrequently WD. I have enough capsules to continue for 2-3 weeks. I am interpreting my body’s reaction to mean it liked the 3 mg every other day. But that will not lead me to the longer taper I desired.
I, very strictly, have adhered to my diet, mainly Stage One, coupled with restricting my intake of foods listed on my EnteroLab test results, and incorporating veggies cooked till soft, carrots, zucchini, green beans, yellow gold potatoes, Jasmine rice, greenish banana. My protein has been cod or turkey. Exclusively, except for an occasional watermelon serving.

I have two options as I see it. Continue my current course of Rx and stop the Rx and using only diet to control my MC hoping healing will continue but also concerned realizing that diet alone may not work for me yet. Or, asking GI doc to keep me on Budesonide for longer.

I am seriously considering asking him to continue me on a maintenance dose while remaining fully committed to my limited diet.
I am 82 and have had MC for 23 years. I had hoped to achieve success with short-term Rx and diet, but my body may need longer to heal. I have made so much progress, and have been able to enjoy life with a degree of freedom I had not enjoyed in years! My GI doc will not easily consent to me continuing on Rx. But, he is not the one living with MC.

I just reread my post and know only I can make the decision. And maybe already have. And, I need to trust my body. But I am so fearful of returning to full blown MC again, that I need and will find comfort in your comments, please.

[Watercolorist]

This is Jeanne. I want to apologize for appending my post with question re Budesonide taper to that of another member. That was hot my intent. I simply wanted to create a new entry on the topic and ask for help.

[tex]

Jeanne,

Either something in your diet is cross contaminated, or your digestive system is healing so slowly that you may need a maintenance dose of budesonide. If you are sensitive to soy, something in your diet probably contains a derivative of soy, or a legume. I realize you believe your diet is clean, but these days, that's an almost impossible challenge. Carefully analyze everything you are eating, especially if you're eating any commercially processed foods that contain more than five ingredients.

Tex

[Watercolorist]

Thank you, Tex

Your input is deeply appreciated and encouraging.
Continuing on a low dose of Budesonide will be pursued with my GI doc before I run out of the Rx. AND, reassessing how I will or will not join others @ restaurants even perhaps bringing my own safe snack to join them.

With only three exceptions in recent months, I prepare all of my food @ home using only fresh produce, and the cleanest turkey or fish I can purchase frozen and shipped to my home packed in dry ice.

On the three occasions when I did believe I had healed enough that perhaps I could join friends or daughter @ a restaurant, we ate @ places I could order rice and well cooked veggies and non oily, supposedly locally caught, fresh grouper with no seasoning. However on one occasion we ate @ a Thai restaurant and I ordered cooked sushi consisting of cucumber, avocado, rice, and the sushi seaweed wrapping. It is possible a hint of soy was used in the sushi rolls although the soy taste was not detectable. During these restaurant outings, I ingested either seasonings I was unaware of or maybe soy. In none of the restaurant outings did I ever experience a setback, but maybe the three experiences set me up for a cumulative negative impact.

Nothing is worth going back to full blown MC. The healing that has begun to occur leaves me feeling so much better on so many levels and in all areas of my life.

Thank you, Tex. You help and have helped so many, I am grateful and fortunate to be among them.

[tex]

Your're very welcome. Incidentally, I forgot to mention — I'm surprised that you can eat watermelon. The vast majority of us can't eat it without reacting. I don't recall exactly what they are, but watermelon contains a number of chemicals that amount to irritating anti-nutrients.

Tex

[Watercolorist]

Thank you, Tex

You just confirmed my thoughts re watermelon. Watermelon appeared to be the only item I consume frequently that could be causing my recent backward direction. I am cutting it out of my diet immediately. Darn, but really a small concession given the negative impact it has.

Jeanne

[Olga Cheb]

Hi all
friends I have been taking budesonide for 10 months now
7 of which 3 mg
those. I am currently taking 3mg of budesonide per day.
my doctor tells me to take it for life
another doctor says that I need to stop taking it, as there is no research on who takes this drug for more than two years and what will happen to the body if I take the drug for more than two years.
one of the doctors advises to replace budesonide with azathioprine

you can write your opinion
I read here on the forum that people can take budesonide for over a year and 10 years
why should i switch to the immunosuppressant azathioprine when i can take budesonide
What do you advise, is it possible to take budesonide for 10 and 20 years, all my life
I am 29 years old
I am generally from Ukraine, the doctors here are not as knowledgeable as they are abroad
More information about microscopic colitis in the English-language segment of the Internet
By the way, I have lymphocytic colitis.

[tex]

Hello Olga,

I'm not a doctor, so I can't give you medical advice, but medical licenses are invalid across international borders, anyway. I can only tell you what I would do if I were in your position. That said, I've been studying published medical research regarding this disease for over 20 years, and I've written several books on microscopic colitis.

You didn't mention whether you have changed your diet, and if you haven't, you're very fortunate that 3 mg of budesonide are effective. Eventually the budesonide will probably become less effective for you, and in order to remain in remission you will need to change your diet. Here is my opinion on the long-term use of budesonide:

We have members here who have used low-dose budesonide treatments for at least 10 or 12 years, with no ill effects. Therefore, obviously, it's generally safe for long-term use for most of us. However, most of us are older. You're young, with most of your life ahead of you. For someone your age, using budesonide for the rest of your live would surely have some negative effects, including the development of cataracts, osteoporosis, thinning skin, depletion of vitamin D, magnesium, and probably many other vitamins, eventually. The risk of developing any or all of those side effects can be minimized as long as you make sure that you're getting plenty of vitamin D and magnesium. But frankly, I doubt that budesonide would continue to be effective for you, for the rest of your life. At some point, it will almost surely lose effectiveness for you.

In my opinion, the long-term use of budesonide would be far less likely to cause damage to your body, than the use of azathioprine, or any other immunosuppressant. But have you considered changing your diet? Here's some background information on the disease:

Microscopic colitis (MC), once diagnosed, is a lifetime disease. The disease is caused by chronic inflammation. There are two ways the symptoms can be controlled.

1. Medications such as budesonide. Unfortunately, published medical research shows that 85% of patients who respond to budesonide, relapse soon after the treatment is ended. Therefore, medications are only temporary treatments. They only address the symptoms, not the cause of MC.

2. Diet changes that eliminate the foods that are causing the inflammation. This is the only known way to safely provide reliable, long-term control of the disease.

The disease is caused by chronic inflammation of the mucosal lining of the intestines, but in many cases, the inflammation can be found at any point in the digestive tract, from mouth to anus, including any and all organs in the digestive system. The initial inflammation can come from infection, parasites, stress, certain medications, and a few other things. But once the inflammation triggers the disease, then the disease tends to perpetuate itself, due to the food sensitivities that are a result of the inflammation. To stop the inflammation from recurring with each meal, we have to avoid every food, medication, and supplement that's causing our immune system to produce antibodies. Microscopic colitis (MC), including collagenous colitis (CC), lymphocytic colitis (LC), and at least 10 other known types of the disease, are usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. Research shows that when the genes that predispose to microscopic colitis are triggered, the genes that predispose to gluten sensitivity are also triggered. The molecules of which food is composed, are long chains of amino acids. Normally, proper digestion reduces those long chains of amino acids to individual amino acids, or short chains of them, that the body can then use as nutrition, or building materials for new cells.

Peptides are simply medium-length chains of amino acids that are the result of incomplete digestion of a food molecule. No one can completely digest gluten, for example. But usually that doesn't matter. It only matters if a person has increased intestinal permeability (commonly known as leaky gut). But gluten sensitivity can cause leaky gut and this can allow partially-digested peptides from certain foods to enter the bloodstream, which provokes an immune system response (because those peptides are obviously not supposed to be in the blood). The immune system then begins to react to certain proteins in those foods every time they are eaten, thus causing chronic inflammation . This is why some of the foods that we have been eating for most of our life can suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them. Believe it or not, all of us with this condition are sensitive to gluten, which means that we have to totally avoid all foods that contain wheat, rye, barley, and for most of us, also oats. About two-thirds of us a are also sensitive to cow's milk, which means that we have to avoid all dairy products. Over half of us are sensitive to soy and/or chicken eggs.

Similar to food sensitivities, certain drugs can also cause the immune system to produce antibodies that trigger MC symptoms. In some cases, just stopping the use of those drugs can bring remission of the MC symptoms. These drugs include antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. But in many cases, food sensitivities develop before the use of the drug is stopped, so the diet must also be changed in addition to avoiding the drug that causes the inflammation. But the bottom line is that if we stop the antibodies from being produced by avoiding the offending foods or drugs, then we can stop the inflammation from being produced and the symptoms will begin to fade away. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).

The Microscopic Colitis Foundation published a newsletter last year with details on how to properly select a safe recovery diet. If you are interested in controlling your disease symptoms by diet changes, you might find the information in this newsletter to be helpful, for fine-tuning your diet. You can download or read a copy of that newsletter by clicking on the link below:

https://www.microscopiccolitisfoundatio ... 479987.pdf

Also, there are diet guidelines posted on this discussion and support forum.

This disease is very unkind to vegans and vegetarians, because all of us are sensitive to gluten, and most of us are sensitive to soy and most legumes, consequently, it's virtually impossible to maintain good health while attempting to follow a vegan or vegetarian lifestyle, simply because there are no acceptable foods that can provide an adequate protein level.

There is no one-size-fits-all diet that will control the disease, but contrary to the claims of the medical "experts", virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC or other IBDs. But non-celiac gluten sensitivity causes basically the same symptoms as celiac disease. Every patient has to customize their diet to fit their own specific food sensitivities. And note that stress (whether physical, chemical, or mental/psychological) has a major effect on MC. Very intense stress, or in many cases, chronic stress. can even trigger a relapse of symptoms in many cases. Therefore it's also important to find ways to minimize stress, otherwise stress can perpetuate the symptoms.

Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac blood test result. The claim that a negative celiac test result means that a patient cannot be sensitive to gluten simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Many doctors mistakenly believe that a negative celic blood test result rules out gluten sensitivity, but there is no medical justification for making that assumption, it's simply incorrect.

Not everyone loses weight because of MC, but it can cause severe weight loss for some patients. Regaining that weight is virtually impossible until the inflammation is brought under control. Once the inflammation is controlled, then healing will begin and it becomes much easier to gain weight.

I hope you find some of this helpful.

Tex

[Olga Cheb]

Hi
Thank you very much for such a detailed answer.
before I was diagnosed with microscopic colitis, I thought I might have celiac disease
More precisely, the doctor thought and asked him to temporarily give up gluten.
I didn’t eat gluten for 4 months and the diarrhea didn’t go away, but I didn’t know about budesonide then
Subsequently, when taking a biopsy from the intestine, another MARSH biopsy was taken from the bulbous space of the duodenum to exclude celiac disease (the villi were checked)
the answer was no

But your post made me think about diet, the fact is that many doctors also talk about diet, but by this word they mean giving up everything that has gluten and lactose, including
That is, butter is not allowed, sunflower oil is not allowed, milk is not allowed, coffee is not allowed, biscuits, wheat bread is not allowed, eggs are not allowed, cheese is not allowed, what kind of oil to fry meat for example?


But in my country there is another problem, companies that sell products "Gluten Free" write on their products in the store that the product does not contain gluten, but in fact it is there already, the doctors themselves say this
It works for us more as a marketing ploy, for example, with this strictly abroad
If your store says a product is gluten-free, it means it's gluten-free.
How to act in such a case?

Thanks for the PDF link, I'll start reading and learning the material
If there are questions about nutrition, I will write in the appropriate section on the forum.
But my usual weight is 44 kg, and if I refuse fried potatoes, dairy products, buns, sausages, then I start to lose weight and lose weight up to 40 kg.
Then how can you refuse gluten and is there a high-calorie gluten-free food so that it does not contribute to weight loss, but at least not weight loss ....

Thanks for the answer

[tex]

The key to avoiding food sensitivities is to eat whole foods. Avoid all commercially processed foods. If you absolutely must eat commercially processed products, avoid those with more than five ingredients, and make sure those five ingredients are safe. I don't understand why sunflower oil should not be safe. I thought sunflower oil was safe for most of us. For most of us, coconut oil is safe, and if you buy refined coconut oil, it doesn't taste like coconut, and it doesn't smoke at normal frying temperatures, the way olive oil does.

Most of us can drink coffee without any problems, although a few of us do have to avoid coffee.`Most of us can use almond milk, and if you buy the vanilla flavored version, it tastes just as good, or better than cow's milk, and it contains just as much calcium and vitamin D as cow's milk.

Tex

[Olga Cheb]

Understood thanks

I will need to think about my diet
If there are questions about nutrition, I will write in the appropriate section on the forum.