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Budesonide stopped working?

S

sunflower65

I've been on budesonide 9mg for 5 months and had drastic improvement in the beginning. Now I am having more and more trouble with bathroom trips even in the middle of the night and my joints and psoriasis are flaring. The Tuesday before Thanksgiving I had a steak, I never eat steak. That seems to be when this flare started.

I'm honestly starting to feel hopeless. I have been on a two year search for answers and have fired two GI docs after being encouraged to "live with it". My current doc says I have inflammatory bowel but has not specified further. I have highly positive ASCA antibodies. I fear calling him and telling him I am not doing well. I'm afraid of him giving up like the others.

Has anyone else flared while on budesonide? Is this a common problem?

Thanks for any information.
 
Scipio

Scipio

Well-known member
Location
San Diego
It is certainly possible to flair on budesonide. Between budesonide and prednisone, budesonide is the "weaker" of the two. Which means less side effects but also means it doesn't control the Crohn's as well.

Tell your doc what is happening. There are many options for treating Crohn's. Perhaps it is time to consider some stronger options for you, such as azathioprine, 6MP, or methotrexate. But the doc won't look for any better solutions if he/she doesn't know there is a problem with the current therapy.

If worse comes to worse, look for a new doc who is an IBD specialist. Not merely another GI, but a GI whose main focus is inflammatory bowel disease.
 
S

sunflower65

I also take tacrolimus for psoriasis and myasthenia gravis. At this point I have MAS (multiple autoimmune syndrome). I keep hoping the slow increases in tacrolimus will start to help the inflammatory bowel situation too.

My first GI was certain the diagnosis was Crohn's. He said either Crohn's or lymphoma from the CT enterography. So he sent me to Mayo where they were not helpful at all. We know now it is not lymphoma and that it is inflammatory and it is in my bowel. You understand my reluctance to complain about increasing problems? I will have to tell him soon. I keep hoping it is just a short flare and things will calm down.

Thank you for your reply. I appreciate the voice of experience.
 
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