Budesonide???

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misspeeps

misspeeps

Joined
Nov 20, 2012
Messages
52
Hi :)

Ive been put on budesonide three times daily. Just wondered anyones experiences on this?

thankyou

laura x
 
Hi misspeeps sorry about the late response. :)

I've always done well on Entocort personally and never had any side effects from it. Its not as fast acting as Prednisone but still does a great job at reducing inflammation and even helped with my joint pain. Hope you do just as well on it and keep us posted! :)
 
I started bludesonide about two weeks ago. I feel somewhat dizzy now and then. My head feels clouded sometimes. Perhaps these thing will go away after I have taken it for a while.
 
Been on it for just over three weeks. I too was cloudy for a few days, but it went away after about a week. Right now I'm not really experiencing any side effects at all.
 
I have had mixed experiences when taking it. At times it worked fast with no side effects. Other times it had little to no impact and my bones hurt and it caused weakness and fatigue.
 
I've noticed more muscle aches and slower recovery times after going to the gym or exercising outside. I seem to be dreaming more while asleep.
 
I know it's way too early to tell but first day I'm going to the bathroom more than ever! A part of me was hoping for a miraculous immediate turnaround like some people get on pred, even though I know this drug takes longer. Bah.
 
Today I only had to go twice. They were soft and watery as ever but, still, only two! So I'm hoping maybe things are starting to work. I have been getting terrible headaches though. Tylenol doesn't help much and I can't take NSAIDS. Very frustrating and painful. Even my eyes are throbbing.
 
I just started another course of Entocort, and also experience only slight side effects. I think the most annoying for me has been heartburn. I had it last time, too.
 
After having been on high doses of Prednisolone for long periods of time in the past, I suffered many side effects. But Budesonide has been effective and I have had no side effects from using it.
I had a bad flare up 4 years ago, running to the loo 15 times in 24 hours, I was exhausted. But one of the tablets I was put on was Budesonide, in fact, I requested it.
It only works in the body were it is supposed to work, not all over like other steriods, I was told. Within weeks I was feeling better and the Crohns was under control.
Hope that helps
 
Definitely seems to be working! Only 1 BM today - which also makes me nervous - it seems weird and scary because I'm so used to 10+ a day. And the constant pain I was feeling at my old surgery site (at terminal ileum - where my Crohn's is and where I had resection) has pretty much disappeared. Still getting headaches and my lymph nodes in the left side of my neck were swollen earlier today but passed after a few hours.
 
stelarjess said:
I just started another course of Entocort, and also experience only slight side effects. I think the most annoying for me has been heartburn. I had it last time, too.
Click to expand...

I only had heart burn for the first two weeks of being on Entocort, it went away after awhile.
 
AlliRuns said:
I only had heart burn for the first two weeks of being on Entocort, it went away after awhile.
Click to expand...

I can't remember the first time how long I had the heartburn, so we'll see, hopefully it'll go away. I'm taking prilosec now which is helping.
 
New to the forum (39 yrs old, crohns 1988, dx in 1990). I've been on entocort for 10 or 11 years now. Started on 3 pills in AM for 6 months approx. For several years, maybe first 5, I've taken 2 pills, breakfast and lunch time. Less side effects but still worked. About 3 years ago, with the stress of new baby, I had to go on three pills, one at bf, lunch, dinner. As of last year now on 3 pills before bf. This combo is the most effective but has more side effects. Still working OK for me but had a second opinion recommend remicade. I am trying a day of juice fasting (Thursday) to provide intestinal rest and b/c Thursday is when flareups typically start.

Side effects for me are bruising a little easier (not nearly as bad as prednisone) and some drowiness like being not 100% aware of surroundings. I've also had some low white blood cell count for the last 4 year. Not sure if its the Entocort but I've had no other health problems to explain this. I also have some ankle swelling that may be caused by entocort. Doc is not sure however. For some reason though I have had little side effects compared to others according to my GE. I had much worse reactions to some of the 5ASA's, like severe joint pain. They also were not effective.

Over all entocort has been a LIFE SAVER for me (meaning I can have a decent life). I had mental side effects with Prednisone back in the 90's. That was a hell I don't want to relive. I am hoping entocort keeps working a few more years, at least until the kids are in grade school. Tissue damage progresses a little more each year. But so far no surgeries!

Hope that helps some. Best of luck.
 
scwman said:
New to the forum (39 yrs old, crohns 1988, dx in 1990). I've been on entocort for 10 or 11 years now. Started on 3 pills in AM for 6 months approx. For several years, maybe first 5, I've taken 2 pills, breakfast and lunch time. Less side effects but still worked. About 3 years ago, with the stress of new baby, I had to go on three pills, one at bf, lunch, dinner. As of last year now on 3 pills before bf. This combo is the most effective but has more side effects. Still working OK for me but had a second opinion recommend remicade. I am trying a day of juice fasting (Thursday) to provide intestinal rest and b/c Thursday is when flareups typically start.

Side effects for me are bruising a little easier (not nearly as bad as prednisone) and some drowiness like being not 100% aware of surroundings. I've also had some low white blood cell count for the last 4 year. Not sure if its the Entocort but I've had no other health problems to explain this. I also have some ankle swelling that may be caused by entocort. Doc is not sure however. For some reason though I have had little side effects compared to others according to my GE. I had much worse reactions to some of the 5ASA's, like severe joint pain. They also were not effective.

Over all entocort has been a LIFE SAVER for me (meaning I can have a decent life). I had mental side effects with Prednisone back in the 90's. That was a hell I don't want to relive. I am hoping entocort keeps working a few more years, at least until the kids are in grade school. Tissue damage progresses a little more each year. But so far no surgeries!

Hope that helps some. Best of luck.
Click to expand...

Hi there, welcome to the forum :) Glad your could share your experiences with us. Please take some time to introduce yourself in the My Story sub-forum.
 
I just escalated treatment to 9 mg / day of Budesonide because I did not notice any difference whatsoever at 6 mg. I'm going to see my MD next week to explore going to Prednisone, but now that I have increased Budesonide, I wonder if I should hold off? Any thoughts?

Thanks
 
My experience is that there is a big difference between 6 and 9 mg. I used 6 for several years as a maintenance but would switch to 9 for flareups. Now I am on 9 every day, taken before breakfast, as doc recommends. Six was no longer working well enough. I also experimented with taking 1 pill at breakfast, lunch, and dinner. I noticed less side effects but the med was also less effective.

Possibly related to entocort I've found that a smaller breakfast, 1/3 my normal size, has helped very much with symptoms I experience later in the work week. I am testing a theory that I won't explain here. But it is possible that the reduction in the food consumed has changed the effects of the medicine. Or it could be 10 other factors. My point is that sometimes it can take months for a change to be effective. I will give my test another 5 weeks.

Hang in there!

-scw
 
ProspectorsQuartet I suggest you discuss it with your doctor as 9mg could possibly be beneficial. My GI has told me that Entocort can also go above 9mg if needed. If your issues are in the lower region of the colon than Entocort will not work for you. "Entocort EC is indicated for the treatment of mild to moderate active Crohn's disease involving the ileum and/or the ascending colon." http://www.drugs.com/pro/entocort-ec.html
 
I've been on it for just over a year now. Started on 9 then down to 6 and then to 3 but started going down hill again. Have been on 9 now since Christmas and no longer doing it for me. So now onto pred for a couple weeks and moving to Humira.

But all in all budesonide did the job well and no side effects for me!
 
I was on 9mg of budesonide for about four months and have started tapering down to 6mg for the last three weeks. I'm not sure why I have been on it for so long, but the doctor didn't seem too concerned. I'm now starting azathioprine and hope it works for me. I also hope to come off the budesonide soon.
 

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