Budesonide and Prednisone

[Kari]

Hi everyone,

I'm curious to hear about your experience with Budesonide. What kind of side issues did you have while on it?

I've been on a 5 months course of Prednisone for Vasculitis, and experienced some pretty severe/uncomfortable side issues while tapering down and finally getting off. However, the steroids kept my BM's better than they have been during the last 18 years. Unfortunately, when I started tapering and now that I'm off, the symptoms are back. I have been eating home exclusively for the last several weeks, but it doesn't really seem to help.

Because of this, I'm now considering Budesonide. Perhaps I'm one of those people who will need to stay on a low dose of steroids for the rest of my life? Anyhow, before I go down this road, I was wondering if those of you who are on, or have been on, Budesonide could let me know about your experience and side issues. I have read in various places that staying on a low dose of Budesonide is safe.

Any input will be greatly appreciated.

Many thanks,
Kari

P.S. Until now, I've been able to treat my GI issues with diet alone, but am worried about any inflammation in my body causing flare-ups of Vasculitis.

[brandy]

Hi Kari,

My stint...4.5 months....Entocort

Most folks do not seem to have any side effects.

I was the exception and had side effects. Mine were: gut cramps at
the high dose and brain confusion/brain fog. I had the brain confusion/brain fog even at the lowest dose. I also
had joint pain....this may have been from MC but I think it had something to do with budesonide.

Two weeks after stopping the last pill the brain confusion/brain fog went away.

Again, the vast majority of folks don't appear to have any side effects.

You could always give it a try and then get off if things become problematic.

[Janie]

I am a person who reacts to all meds any kind except Budesonide. Down to 6 mg after 9 mg. and no reactions. Go figure, so give it a whirl. My diet is very limited to begin with. I had to go on it after a raging head cold with watery diarrhea after a 2 year remission. My GI knows my diet but fearing my weight loss he put me on it. I did remission the first time without meds.

[jlbattin]

I was on it for about a year and a half. I tapered very very slowly..................one table every 4-5 days at the end....................I had no side effects whatsoever. In fact, I never felt better in my life. During that time, I also got my diet under control so that when I did go off of it, it would be ok. I've taken it one time since then for a flare and only for about 2 weeks. I'm going on 3 1/2 years now.

[Kari]

Brandy, Janie and Jari - thank you so much for your replies - very encouraging!!! I keep forgetting that it does not have to be a lifetime commitment - makes it less scary. I can certainly change my mind if it doesn't work :)..... Kari

[skp]

Kari,
I, too, react to most drugs but I was on Budesonide for 5 months with a slow tapering and had no side effects. It was very helpful to me in when I was diagnosed with LC.

Susan

[jnmast]

Hi Kari,
I have been on a very slow taper of Budesonide since March-- (initial CC diagnosis)-- one set-back in May had me 'restart' the wean but overall has been a very positive experience. I have also committed to a very limited diet (GF, soy free, Dairy free, no preservatives, etc.) so hoping this helps me stay off of it when I'm finally finished.

I did two months each of 9 mg, 6 mg and then 3 mg. This is the first month I'm doing 3 mg every other day and so far, it is going very well. I did not seem to have any effects at all from it and am typically sensitive to medications.
My stomach pain and fatigue and D are no longer an issue for me, so I hope and pray that the diet changes will help me maintain an amount of remission.
Best to you in this decision... hope it helps!

[DeeDee]

I am on my second round of Budesonide. I am now taking 3 mg every 4 days to taper off slowly. I had many side effects, such as thinning hair, bruising, headaches, acne, increased facial hair, and vision changes. GI didnt think it was the meds. I didnt have these on the first round but I wasnt on it as long. I made huge dietary changes and that is helping. budesonide did help my D but I need to get off it. Good luck!

[Kari]

Susan, Jacqueline and DeeDee - thank you so much for taking the time to share your experiences - it is very helpful..... Kari

[sonja]

Hi Kari,

I used entocort for almost four years in periods. I had no direct side effects while using it. On the contrary I felt ok with it. But it worked less and less and it diminished my resistance very much. I had constantly the flu and I got otitis media, for which I needed antibiotics, forehead inflammation, etc. In the first year only in the winter, but the third year (2013) these problems started in september and stopped in april. That was the reason I wanted to stop entocort and turned to diet chances.
Since I follow my strict diet I don't have this problems anymore.
I hope you find the solution that fits you.

Sonja

[Kari]

Thank you Sonja - I'm so glad to hear that you're now managing with diet alone - good for you. Even though I ordered Budesonide from All Day Chemist, I am very hesitant to take it. I'm still suffering from Prednisone withdrawal. Brandy - the confusion/brain fog you're talking about is still bothering me. My other lingering symptom is hair loss. I think I've lost a third of my hair, and am still "shedding". Of course, Prednisone is a lot more powerful than Budesonide.

Meanwhile, my intestines are finally getting quieter after coming off the drug, as well as no longer eating out. Perhaps between a careful eating plan and eating home exclusively, I can finally get this MC monster under proper control .

Thanks again to all of you for your input.

Love,
Kari