ENTOCORT/BUDESONIDE advice anyone??

[JJ_777]

Hey fellow Crohny's & UCers...

My GI is looking at putting me on Entocort/Budesonide in a few weeks... I have read quite a bit about the medication and its side effects... but it is all very in-personal and technical...

Basically I am interested in everyones experience with the drug as well as the good the bad and the ugly effects of Entocort/Budesonide from the people who know best... those who are on it or have taken it....



I would appreciate any and all info as I was only DX with Crohn's in february so I am new to it all!!!

JJ

 

[Mj11jM]

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[bushydougie]

I have been on Entocort twice in the past 7 months. When I first started I was on 9mg (3 tablets a day) and it took exactly a month to feel any effect. When it did kick in though it really worked. When I took pred I was on a low dose of 20mg and it took 3 days to have an amazing effect so you can see the difference!
The side effects I have had are insomnia (though I had this before as well) which seems to get worse as I taper off Entocort. My skin gets bad with spots as well though not quite as bad as on pred. I have had problems with nausea but am not sure if that's connected or not.
After coming off entocort, well when I was on the lowest dose the first time I did feel symptoms returning so after being off it for a short time I was put back on it again at 6mg and then tapering after 6 weeks.
From everything I've read about on here Entocort is a lot less likely to give you side effects as pred does but I was only pred for a short time at a low dose so can't really comment on it except with regard to the level of time it takes to work.
I hope that if you try entocort that it works really well for you. Just give it
some time to take effect!
One last thing... I don't know what it is like in Australia but here in the UK it's not a common drug. I had to visit 7 pharmacists to find it and my GP doesn't know about it at all
Let us know how you ge on
Sam

 

[mallenfaye]

Hi

I am currently on Budesonide and have been since February! I was on the dose of 9mg (3 tablets everyday) but currently being weened off ready to do on to Azathioprine! 6mg at the mo, down to 3mg soon all being well, seeing my GI on tuesday.
I didnt really have any problems on this when on the full dose but I am struggling a bit with the weening process but my GI ensures me this is normal.
When I first started taking it I had a bit of disrupted sleep and therefore was very tired and irritable but this soon settled.
Now that I am on reduced amounts I am getting bad headaches and experiencing very sore teeth (this might be a coincidence but I usually have good teeth).
Luckily I didnt experience any weight gain or puffiness from this steroid and my appetite didnt change either. I wasnt keen to be on steroids for this long but my GI was happy as I wasnt presenting any bad side affects and it wasnt causing me any problems.
Good luck and let us know how you get on.
Faye x

 

[Astra]

Hiya JJ

same here, nothing sinister, no side effects, nothing like Pred!
Entocort always works for me, goes straight to the source and whacks it head on!
good luck
xxx

 

[RFarmer]

I started on 9mg back whenever. I had to taper after two months, taking away 3mg each taper. At the beginning of the tapering procedure, I started getting horrendous cramps. Absolutely terrible, shoot me now, if you don't help me, I'm going to cut out my own intestines cramps.

It could be unrelated to the entocort, as I still get cramps sometimes, but it decreased when I finally stopped them.

 

[lola99]

I've been on entocort for about two months now and i don't notice that its added to my symptoms at all. The predisone is whats caused all my bad side effects. Im weaning right now and i'm having backache and i've got cushings syndrome (face puffy,buffalo neck,etc) but since i started entocort i haven't noticed that any symptoms are new or worse.

 

[JJ_777]

Thank you all so very much for you very fast and reassuring replies!!! You have no Idea how much I appreciate your feedback & it has certainly eased my mind!!...

I will be on 3 Tabs p/d for the first 2 months then tapering back to one a day...

I guess my main concern was weight gain ( as I am already overweight) I already have a buffalo hump.. ( have had it since 18) So I don't imagine that being a major concern lol...

The rest seems like it could be controlled with the pain killers and anti nausea medication that I am currently on for the crohn's ...

Again THANK YOU ALL for your fast reply!!

God Bless and I wish you all a long and happy remission!!

JJ

 

[JJ_777]

I have been on Entocort twice in the past 7 months. When I first started I was on 9mg (3 tablets a day) and it took exactly a month to feel any effect. When it did kick in though it really worked. When I took pred I was on a low dose of 20mg and it took 3 days to have an amazing effect so you can see the difference!
The side effects I have had are insomnia (though I had this before as well) which seems to get worse as I taper off Entocort. My skin gets bad with spots as well though not quite as bad as on pred. I have had problems with nausea but am not sure if that's connected or not.
After coming off entocort, well when I was on the lowest dose the first time I did feel symptoms returning so after being off it for a short time I was put back on it again at 6mg and then tapering after 6 weeks.
From everything I've read about on here Entocort is a lot less likely to give you side effects as pred does but I was only pred for a short time at a low dose so can't really comment on it except with regard to the level of time it takes to work.
I hope that if you try entocort that it works really well for you. Just give it
some time to take effect!
One last thing... I don't know what it is like in Australia but here in the UK it's not a common drug. I had to visit 7 pharmacists to find it and my GP doesn't know about it at all
Let us know how you ge on
Sam

Hey there sam... thanks for your reply!!! Budesonide is still in its early stages over here too... to the point that my GI called it a 'trial drug'... I live in a small coastal town.. so I assume they will have to order it in for me... Thanks for bringing that up!!! I might have to go down to the pharmacy today and have a chat about it!!!

Will keep you posted on the Budesonide saga!!

JJ

 

[crazycanuck]

Tried it over the summer last year. We tried it instead of Pred as a tie over until I could start Remicade which was being held up forever with insurance issues. Anyway I didn't have any side effects at all from it....just never had any effects either haha.