Budesonide

[terre]

I've been on Budesonide for 3 weeks....it has definitely helped with the urgency (and maybe frequency), but not the D.

In taking it, I've been edgy, weepy, very lethargic, have no stamina, headaches, and my voice seems weak (weird). Also, since January, I've lost another 5 lb (which I don't have to lose). It seems that everyone I see talks about how thin I am (and not in a good way) and others ask if I'm tired (well, yes I am).

I've read different posts about the med working in 2 to 10 days. Do you think I've given it enough time to work? At this point, would I need to taper?

Oh yeah, just as a teaser, there have been maybe 3 or 4 times in the three weeks that I have been to the toilet that it has not been WD...it's really hard to describe....even a few "floater pieces", but then right back to WD, the next, and the next, and etc.

The question is if I stop this, where do I go next? I've tried Welchol, Cholestyramine and now Budesonide....obviously there is a puzzle piece yet to be found.

Thanks,
Terre

[Disappointed]

The first time I took it, my WD stopped after the first 72 hours of taking the first 3 capsules. However when I relapsed and was placed on it a second time, it took 4 weeks with the addition of a gluten free and diary free diet to get rid of the WD entirely. I've still got 3 weeks of tapering to go and hope this is the last time I have to take the drug.

I've also found that the side effects are chancing my personality. However I've not experienced the weight loss.

[brandy]

Hi Terre,

I have limited time but saw your post. I was an entocort user. I suspect most folks respond to 3 Entocort pills within 2-3 weeks. On the forum we have had several European members on 3 Entocort for something like 10-12 weeks before they stepped down to two pills. When I read their stories I remember thinking wow, that is a long time on a high dose. These users all got off of Entocort but were on longer----something like 8-9 months. Their experiences are definitely a very small percentage and I would call them outliers in the bell curve.

In taking it, I've been edgy, weepy, very lethargic, have no stamina, headaches, and my voice seems weak (weird).

I've also found that the side effects are chancing my personality

That said, I had extreme side effects on Entocort so I understand the difficulty. The day I took the last pill I knew was last day I would ever take Entocort and I was on it 4.5 months. I am scrupulous with diet as a result. I kept thinking the side effects would be lessened at lower dose but I still felt lousy at one Entocort every three days.

Other options: Pepto bismol regimen, Uceris (same forumula as entocort I think but acts differently in body), LDN

Brandy

[brandy]

Terre,

Do not taper if you still have D. You should have consistent daily normans, solid stool, before tapering. Only reason to taper now would be if you decide to get off of Entocort and try something else.

If urgency is less and frequency is less I would say it is working albeit very slowly.

Consider take a hard look at your supplements and discontinue any supplements you can for awhile.

Talk to Tex if you are taking any prescription meds. They can prevent remission.