I’m on Budosenide and now I feel worse, how is that possible

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Jonas
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I’m on Budosenide and now I feel worse, how is that possible

Post by Jonas »

After many years with MC I decided that a had to try Entocort (Budosenide).
The decision is based on that I felt worse than before and that I need to try Entocort before I try anything else according to my gastroenterologist.
Now to the problem, 2 weeks in I feel more tired than in a very long time and I’m no better in my stomach. Stools are not better and the frequency a go to the bathroom are worse than before.
Usually I did go 1-2 times, and the last 2 weeks its 2-3 times a day.
Is this normal, thus it gets worse before it gets better? I’m confused, I did not expect this.
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tex
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Post by tex »

Hi Jonas,

No, your symptoms should not get worse after starting budesonide. Either your symptoms should improve, or they should stay the same. If they are worse instead, you might be sensitive to one of the ingredients, or something else is going on.

I hope that you will be able to find the problem.

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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sunny
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Post by sunny »

It took me a while to respond to Budesonide.....my body didn’t suddenly stop with the D....it sputtered to a halt with many days of life like always, then gradually I improved ....be careful not to change your diet and allow foods in that you have avoided....

Try not to stress over the fact that your body isn’t “jumping to attention and suddenly getting over a long standing problem....”
Plus, fatigue is a side effect of most steroids, including Entocort

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Gabes-Apg
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Post by Gabes-Apg »

Not everyone responds well to Budenside. It is not a 'fix all' for everybody.

are you taking Vit D3 and magnesium??
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Jonas
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Post by Jonas »

Thank you for your answers.

I will give it 2 more weeks then I need to contact my gastrologist to see how to proceed.
I have also been under a lot of stress feeling worse and managing projects at work. So I know that that has made an impact. I’m going to relax more and see if it helps somewhat.

I remember taking prednisolone (80, 70, 60, 50, 40, 30, 20)mg for a week some years ago and back then I remember that the stools was not better. And I thought it was strange since it was such a strong dose.
That time I was speeded could not sleep very well the first 2 nights. If you read about steroids almost everyone says they get more energy. Maybe it’s different with Budosenide.

If not 9mg Budosenide will make the stools better, what will? What else is there to try?

Currently I’m taking 100mg T4 hormone, 2mg LDN and 9mg Budosenide.
D3 2500-5000uG, and 200mg tropical magnesium. I do not want to upset my stomach with oral magnesium (even ReMAG).
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tex
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Post by tex »

Jonas wrote:If you read about steroids almost everyone says they get more energy. Maybe it’s different with Budosenide.
That is true for budesonide also.

Other than an immune system suppressant, the only relatively safe medication left to try is cholestyramine. Even if you tried it early on and it failed, it might work now.

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 brandy »

Hi Jonas,

I think two more additional weeks is a good trial. I think Mayo has a couple of studies out giving the percentages or people that budesonide works for.....I can't remember but I think something like it does not work for maybe 20% of the people.

My experience was solid stool in 48 hours and constipation in about 10 or 14 days.

I had fatigue while I was on it.
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Post by Gabes-Apg »

200mg topical magnesium is not enough. Daily requirement is about 350mg-400mg.
if you are deficient you will need more than this for at least 8-12 weeks
(espeically if there is external stress etc)

it is possible to do this solely with topical magnesium if you apply it multiple times through the day.

while you are inflammed and under periods of stress i would ensure that your Vit D3 daily dosing is in the upper range of what you are doing
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artteacher
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Budesonide

Post by artteacher »

I can't write too much now, but I wanted to tell you that my first two trials of Budesonide was difficult... I felt much worse. Each pill was like eating a hot coal. Horrible extreme feeling of heat & heartburn, night sweats. I DO tolerate name brand Entocort EC however. If you want more details, let me know. ( I think the sulfate component in the inactive ingredients of Budesonide caused the problem).
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