entocort?

Leah · Post by **Leah** » Mon Feb 27, 2012 5:50 pm

Hi everyone. I just got an e-mail from my doctor saying I can try Entocort (budesonide), but he listed all the side affects and they are scaring me to death. To those of you who have taken this drug.... what side affects did you get and how long were you on it?

Martha · Post by **Martha** » Mon Feb 27, 2012 6:58 pm

I was on it for 3 months, and I didn't have any side effects.

That was before I found the Potty People. I took it for the 3 months that the doctor told me to, and I relapsed a little less than a month after stopping, just like he told me I would. He gave me another prescription for more, but then I found the diet connection, and tried that instead. I am very thankful, though, for those three months, which showed me how good it felt to be normal.

nancyl · Post by **nancyl** » Mon Feb 27, 2012 7:19 pm

Hi Jenny,
I was on it for seven months with no side effects. I wouldn't suggest that you take Entocort if you are not comfortable, but any medication has a list of side effects as long as your arm. I was told once that in a lot of cases only one person in perhaps many thousand have a side effect, so it has to be listed. The Entocort calmed things down almost immediately so that I could get some relief, watch my foods, and put on a couple of much needed pounds. I do not like taking medication and usually go the alternative route, but sometimes it's necessary. That's just my opinion.

Nancy

nancyl · Post by **nancyl** » Mon Feb 27, 2012 7:20 pm

Ooops sorry, I meant Leah.

Nancy

maestraz · Post by **maestraz** » Mon Feb 27, 2012 8:25 pm

Hi Leah,
I have been on Entocort for most of the last year, with no nasty, prednisone-like side-effects. Do not be scared of it, but be aware that Entocort by itself will not be likely to solve the problem. I have not had a single side effect from it, though I am trying to wean off of it after this length of time, and it remains to be seen how that will go. I have been GF/DF and mostly soy-free over the last year as well. I am a firm believer that if you take Entocort in the absence of dietary modification, you are wasting a lot of money. I have a 5-ASA, Colazal as a backup to the Entocort, but will not try that until I have an extended period with no travel or other obligations.

Gloria · Post by **Gloria** » Mon Feb 27, 2012 8:26 pm

Hi Leah,

I have been on various dosages of Entocort for 5 years. I haven't noticed any side effects, but I have had deterioration in my DEXA numbers (I have osteoporosis). I don't know what effect Entocort has had on the deterioration.

I just visited my GI today and asked him about being on it for a long time. He said all steroids have some drawbacks, but Entocort is one of the safest to take. After I asked, he wrote a prescription for another year's worth.

I'll be posting about my visit in another thread.

Gloria

MaggieRedwings · Post by **MaggieRedwings** » Tue Feb 28, 2012 6:23 am

Morning Leah,

I was entocort for about a year and stopped taking it due to imbalance issues and blurry vision. Most people are fine with it but a couple of us have had adverse effects.

Maggie

Leah · Post by **Leah** » Tue Feb 28, 2012 10:39 am

Thanks to all of you. I am picking up the prescription today and will start with the GF and DF diet Monday ( when I can get to the right store for some stuff) and also research all the hidden places these things hide. I will take all and any suggestions on go-to foods and meals to make my family. I am also considering coughing up the money for the Enterolab test soon.
Thanks again

coryhub · Post by **coryhub** » Tue Feb 28, 2012 10:43 am

I have been on Entocort twice in the last two years and I may go back on this medication for a third time. I flared up last weekend and am still sick and having a hard time functioning at work. I feel lousy today. On the mail order site Medco I see I can get 90 budesonide pills for $120. That's $30 less than I paid for Entocort last year at CVS drug store. I have no noticeable side effects to this drug.

Post by **tex** » Tue Feb 28, 2012 10:47 am

Leah,

IMO, the best part of the EnteroLab test results is that they give us some solid information on which to base our diet decisions. We don't have to guess, or wonder about those foods. There are always plenty of secondary food issues that can cause problems as well, so having valid information on the most common problems, can eliminate a lot of wasted time, and make tracking down any secondary issues much easier.

If you need some menu ideas, here are some meal suggestins:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=53

and Dee's Kitchen has hundreds of proven, GF, DF, SF recipes, that taste much better than most of the commercially-made GF, DF, SF foods, along with suggestions for ingredient substitutions, for those of us who have additional food-sensitivities:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Good luck with your treatment program, and please keep us updated on how it's working.

Tex

brandy · Post by **brandy** » Tue Feb 28, 2012 4:22 pm

Hi Leah,

I was on for 4.5 months, had some side effects but the positives out weighed the side effects. I just sent my Enterolab sample in yesterday so should have those results in 3 weeks. If I had to do it again I would have done the Enterolab testing sooner but I didn't really understand the significance at the time. Brandy

brandy · Post by **brandy** » Tue Feb 28, 2012 4:52 pm

Hi Leah,

Also I found Zizzle's shopping list to be helpful. Go to the top where it says "diet info" and select the first sticky that says Tips for starting the GF, DF etc diet shopping list. I keep it in my purse and refer to it. Brandy

DebE13 · Post by **DebE13** » Tue Feb 28, 2012 4:54 pm

Hi Leah, I've been taking Entocort for about a month now. It's helping with the D but I have lots of other issues that I'm trying to figure out. I don't think they're related to the Entocort and it's far better than taking Prednisone. I'd prefer none at all, but I'm not at that point yet. Diet is essential and lots of patience.

Sharaine · Post by **Sharaine** » Tue Feb 28, 2012 6:10 pm

Hi Leah,

I took Entocort for about 4 months. I did experience hair loss. The D did respond well to Entocort, but I only had a couple of Normans during that time. I see that you're going forward. I wish you well in your efforts.

Sharaine

carolm · Post by **carolm** » Tue Feb 28, 2012 7:37 pm

Hi Leah,
I also took Entocort for 4 months and the only negative side effect was some abdominal cramping that I eventually decided was related to Entocort because the cramps reduced and went away when I titrated off of it. This cramping occurred about 1 day a week. It was a nuisance.

The advantages for me outweighed any negative effects. It got me back on me feet so that I could work and get back to life. It bought me time to get on top of the diet and food sensitivity issues. I would do it again if needed. My weight stabilized before I got off it. Prior to that it was dropping rapidly.

Like Brandy, I just sent off my Enterolab testing today.

But I've been off Entocort for 5 weeks now and have not had a flare---- so just another testimony to how essential the diet changes are. Without them I'm sure I would have relapsed by now.

Take Care--
Carol

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