Budesonide withdrawl???

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Trish RN
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Budesonide withdrawl???

Post by Trish RN »

Anyone ever experience this?

I just went from 6mg to 3mg budesonide on Friday. It's Sunday now and I have had some crazy symptoms. I am extremely sleepy. Also, I get hot then 2 seconds later I'm freezing. I'm feeling depressed, anxious, and generally out-of-sorts. Is this related to the decrease in budesonide? If so, how long will it last? I can hardly function. Any input would be very appreciated. :cry:

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Sheila
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Post by Sheila »

Hi Trisha,
I took 3 mg of budesinide every day for well over a year. Once I felt I had stabilized a bit, I dropped to 3 MG every other day and a month ago down to 3 MG every third day. I notice I have more fatigue on days that I take the budesinide. Other than that, I haven't had any withdrawal symptoms at all. I have been GF/SF/DF/EF for 2 years and feel pretty well most of the time.

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Trish RN
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Post by Trish RN »

Hi Sheila,
Sounds like your regime is a slower way to reduce the meds. I may try that and see if I feel better.
Thanks so much for your input!

Trisha
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fatbuster205
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Post by fatbuster205 »

This sounds more like you are coming down with a flu like virus! Get well soon! Anne
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tex
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Post by tex »

:iagree: with Anne. That doesn't sound like symptoms that reducing a corticosteroid dosage could cause.

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Trish RN
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Post by Trish RN »

Thanks everyone for your input! Whew....I am relieved to hear that it does not sound like steroid w/d. I really want to get off the Budesonide and control my MC with diet only. So far I have been pretty good about my diet! I sure have learned a lot about gluten, dairy, eggs and soy. :shock:

I have been on Budesonide for almost 1 year now. Time to try to stop it again! So far, so good in the "intestinal event" dept. :lol:

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Post by mzh »

I've stopped Entocort so many times I've lost count. I don't think I'll stop again. It took a month for it to do any good this time; it usually took 3 days. The only things it does to me is make me itchy some days and cause little white bumps to emerge on my hands. When I stop, so do the side effects. But to me, Entocort is too good of a thing. Without it, I have awful gas and loose stools. Ugh. :oops:
Also have sleep apnea
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Post by Leah »

Nope, didn't happen when I weaned off.
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Post by mzh »

That's terrific, Leah. Lucky you! :smile:
Also have sleep apnea
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Post by Gloria »

I've stopped Entocort so many times I've lost count. I don't think I'll stop again.
:iagree:

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DJ
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Re: Budesonide withdrawl???

Post by DJ »

Trish RN wrote:Anyone ever experience this?

I just went from 6mg to 3mg budesonide on Friday. It's Sunday now and I have had some crazy symptoms. I am extremely sleepy. Also, I get hot then 2 seconds later I'm freezing. I'm feeling depressed, anxious, and generally out-of-sorts. Is this related to the decrease in budesonide? If so, how long will it last? I can hardly function. Any input would be very appreciated. :cry:

Trish
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Hello Trish,
I feel poorly for two weeks when I reduce Entocort. When I went from 9 to 6 mg and from 6 to 3 mg I was achy, tired, had headaches, including one migraine each time, and felt generally less well for two weeks. After that time, I improved and went back to feeling ok. With each reduction I also had to adjust my diet.
DJ
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Post by Julie »

Hi Trish,

I've experienced the same symptoms in the past. I had to stop the entocort (without tapering) and then suddenly ... adrenal insufficincie.

Sometimes, when you take a fairly high dose of cortisone, your adrenal glands become lazy. They don't produce enough of the cortisol hormone. So you go into some sort of a withdrawal stage. In some cases, it gets quite serious, such as in mine ...

The consequence was that I had D, I was nauseous, I had headaches, I was dizzy, my blood pressure was very low, I was hot and cold all at the same time, I felt depressed, anxious, paranoid, ... As it progressed, I became more and more tired. It came to a point were I almost didn't produce any cortisol at all, and I got really sick. I couldn't get out of bed. That's when they found out that I should have tapered the entocort slowly. SLOWLY ! If you go too fast, your adrenal glands don't get enough time to begin working again. Some people also have this problem, even when they tapered the entocort.

When they found it, I had to test my blood every week. I had to take hydrocortisone (the hormone, so that you can start healing). The specialists weren't even sure if I would ever get rid of that condition. I got lucky : I got rid of it.

It only takes a bloodtest to be sure if you have any doubts.

Trust me, this is the worst case scenario. Not everybody reacts this way... I'm just sharing my experience.

Good luck (I hope that you will get better soon)

Julie
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