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Crohn's Disease Forum » Treatment » Budesonide ?


06-28-2010, 10:04 AM   #1
pompeybird
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Budesonide ?

I was put on this when i was diagnosed on thursday (3mg) but about half hour after taking it i get horrible headaches and feel tired , not just normal tired but wiped out near on , i took one this morning and had to go lay down and ended up sleeping for 3 and a half hours (after having a pretty good nights sleep) and have just taking one now and feel the same again , i also woke up from my nap today with really bad shakes im also feeling quite sick on them

Im hoping its just my body adjusting but how long till the side effects wear off do you think ?

thanks xxxx
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06-28-2010, 10:22 AM   #2
Regular Joe
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I had some side effects witht he same drug that were unpleasant. I'm not sure if I got tired. But it took about 3 weeks before all the side effects either went away, or became manageable to the point where I dodn't notice. But the first week was pretty uncomfortable. I just felt that whatever the side effects, it was worth giving this a try because my flare was getting worse.
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06-28-2010, 11:25 AM   #3
Astra
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Hiya

bit confused here? I'm on Entocort (budesonide) and I take 9mg (3 x 3mg) all at once in the morning, not spaced out, not sure you should be doing this? The same goes for any corticosteroids like Pred. check your directions, or speak to your doc about this.
one 3mg tablet won't even touch the sides!
xxx
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06-28-2010, 11:50 AM   #4
pompeybird
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Sorry i didnt explain im on 3mg three times a day one in the morning , afternoon then evening and have to eat about an hour after (as said on directions)

I have just woke up from yet another lay down after taking my afternoon dose

I spose the weather might be contributing to it (its 32 degrees here)
Im seeing the doctor on weds so i will defo mention it to him

I normally react to most meds im given (for my other problems) just never been so tired on a medication before
06-28-2010, 12:43 PM   #5
Astra
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Hiya

it's still not right tho!
here read this
http://digestive-system.emedtv.com/b...ec-dosing.html

you shouldn't be taking it three times a day, prob why you're so sick and tired
xxx
06-28-2010, 12:48 PM   #6
pompeybird
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Hiya

it's still not right tho!
here read this
http://digestive-system.emedtv.com/b...ec-dosing.html

you shouldn't be taking it three times a day, prob why you're so sick and tired
xxx
OMG thats actually shocked me im going to call the lady whos number the GI gave me tomorrow (she is like a support point of contact so any questions etc i can speak to her)

Another thing that i found odd is on the leaflet that came with the meds it says DO NOT suddenly stop taking them as it can make you quite ill , well he has only given me 8 weeks worth and im not due to see him again till 7th october (got appt through this morning) so im not sure what im meant to do ?
06-28-2010, 01:00 PM   #7
pompeybird
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Ive just read the leaflet that come with my meds and it does say to take 1 3 times a day (morning afternoon and evening) but that still dosnt explain what im meant to do after the course has finished as it says on the leaflet dont suddenly stop taking them , well im not due to see GI again till october

Im a tad confused now lol
06-28-2010, 01:52 PM   #8
Astra
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when a gastro gives a prescription for a short course, then you need to see your GP for a repeat prescription BEFORE you run out, you musn't just stop, it's dangerous. Your adrenal glands need time to adjust.

You must have a different leaflet to me! mine says
'the usual dose for an attack of Crohn's is 3 capsules in the morning before breakfast'
then it says
'normally you will take this number of capsules for up to 8 weeks, your doctor will then gradually reduce the dose'

I'd check with your doc, cos I've taken 3 for 8 weeks, now on 2 for another month, then down to one for a month, and I haven't had any side effects, it's working great!

xxx
06-28-2010, 02:02 PM   #9
pompeybird
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im seeing my GP weds (although its the same one that told me it was all in my head) so im defo going to mention it to him

Im not sure if this makes a difference but in big letters at the top it says BUDENOFALK 3mg then under it says budesonide ?

The GI didnt say i had to see my GP at any point at all which is why i was confused esp as im not seeing him again for 3 months
06-28-2010, 02:16 PM   #10
Astra
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my leaflet says ENTOCORT CR then Budesonide

here read this
http://www.netdoctor.co.uk/medicines/100003140.html

it says one three times a day!!
so it's different than mine, PHEW!!!!
If this was me, I'd ask about Entocort (budesonide) it is not absorbed thro the bloodstream like yours, it is systemic, which means only goes to the inflammation, so causing less side effects

bloody hells fire! we got there in the end didn't we!!
xxx
06-28-2010, 02:25 PM   #11
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Thanks for that sorry to be a pain its all so new to me lol
When he prescribed them to me he said they are a mild steroid and i wont absorb it into my body the same as others so it wouldnt effect the osteoperosis , on that link (and also the leaflet ) it says use with caution with ......... then a list and osteoperosis is in that list

Everything seems to contradict itself at the moment and made worse by the other problems i have
All i can say is thank god for this place
06-28-2010, 02:47 PM   #12
Silvermoon
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Don't ever feel like you are being a pain. I am a nurse and I STILL get all confused by my meds....lol.

In reference to the names: budesonide is the generic name of the drug, the main name of the drug, if you will. the other names (Entocourt, Budenofalk, etc.) are the brand names. Different companies make the same drug, they just might have different "fillers" in them, and will give them different names from other companies' so they don't step on each others toes, so to speak...lol.

But basically, it is still a corticosteroid, like prednisone or any of the others. They all work to decrease the inflammation system and shut down the immune system. In budesonide's case... it shuts down a specific part of the immune system, rather than affecting the whole immune system, like prednisone... that is why there is less side effect with budesonide.

I hope that makes a little bit of sense, but it's probably clear as mud. Ether way, you do need to see your GP for refills, as you definitely cann't just stop this med cold turkey...it will mess up your adrenal system, and people who have stopped too fast have been know to develope diabetes, as the pancreas gets really confused.

And I agree with Joan: it is very unusal to split up doses of the steroids, so I would definitely ask your doc about this.

Good luck!
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06-28-2010, 04:35 PM   #13
Regular Joe
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Hi all,

I split my dosage over the day. The first month I took 9 mg. I'm currently taking 6mg. And for the final month, I'll be taking 3mg which does work as a taper. I only had two prescriptions which accounts for two months, but if you figure in the tapering month two and three, two 9mg prescriptions is all that is needed for 3 months.

The directions on my prescription make no distinction as to when it should be taken, I could take all 9mg at one time or at three times over the day, which is what I did. When I tapered down to 6mg, I noticed increased anxiety and a bit of diarrhea, something similar as when you taper on pred, but it only lasted about 3 days. I assume when I taper down to 3mg, I'll also experience some mild side effects.

Maybe if I would have taken all 9mg at once, symptom relief might have came sooner...I noticed it after two weeks, but I'm still doing great as far as symptoms go, everything is pretty much tamed. Not gone completely, but much more manageable than ever since this flare began a year ago.
01-17-2017, 03:52 PM   #14
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I was put on Budesonide after a recent Crohn's flare had to stop taking It ! It gives me the same side effects as prednisone. EXTREME gas abd. distention, look like 7 mth. preg. can not pass the gas, extreme sweating. Does anyone else experience these side effects? My Dr. stated no other pts. report this.
01-18-2017, 12:22 PM   #15
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Budesonide gave me some pretty bad side effects. I don't sleep, and when I do, I have terrible nightmares. I feel out of it all the time and I get my period every other week. I went down to two pills in the morning and that has helped.
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