Entocort long term?

Curious if anyone has used Entocort as a long term treatment. I seem to be responding pretty well to it and was wondering if it was a long term option if I try to get on aminosalicylates and they don't work out.

Not safe. It's still a steroid, albeit one with fewer side-effects in the short term than Prednisone. But over the longer term, the probability of serious side-effects rises. Don't take it for longer than 3 months.

Hi,

My son took it for about 6 months. 9mg to start and then he was tapered to 6mg and then to 3mg. He really didn't seem to have any side effects on it or any withdrawal symptoms from it.

I'm on the 9mg dose at the moment. The only side effect I'm seeing is slightly elevated blood sugar, but nowhere near what prednisone does to me. It's not perfect, I still can't eat certain things (on prednisone, I can eat almost anything), but I much prefer it to prednisone.

I would never stay on Entocort long-term. I got burned by Pred: never going back on steroids, even if the Crohn's return. I'd rather have more surgery first.

I stayed on it for a year and a half, trying to avoid an unavoidable surgery =/

All the other meds had failed: azathioprine, 6MP, methotrexate, Remicade and Humira. But Pred was the one drug I responded to. At first I was grateful for that, 'cos it would fix me up and get me out of hospital, but every time I tapered off it I would soon relapse and end up back in hospital, 'til there came a point where I couldn't even get below 20mg, let alone off it, without becoming seriously ill again.

Pred is not psychologically addictive, but your body does become physiologically dependent on it. If you have been on it a long time, you suffer the effects of adrenal suppression - severe fatigue, loss of appetite, weakness, etc. - even if you taper off slowly. That's what happened to me. It's been nearly 5 months since my surgery, and for the past three months I have been suffering from sheer exhaustion after stopping the Pred - but I am determined to ride it out until my adrenal glands fully recover.

After stopping Pred my skin became horribly sensitised and itchy and still is that way (admittedly I had also come off Oxycodone shortly befoer Pred, so maybe both meds had an affect on my skin). More shallowly, I have put on a lot of belly weight, which, so far, is showing no sign of budging whatsoever (although the moon-face has gone at least).

I didn't get any of the dire consequences of Pred, luckily, but I wasted a good 12 months on it when I had a surgeon who wanted to operate (but couldn't force the issue, because technically it wasn't an emergency). Buying the extra year of time wasn't worth it. In a nutshell: if the meds don't work, don't resort to Pred.

Judy - I've never even heard of avascular necrosis before. I wish doctors would give us a serious talk about steroid use and their side effects - if I had known all the down sides, I might have gone a different route - or at least made sure to take vast amounts of calcium while on them.