Laurie F
i was on entocort for 5 years.
it is very hard to get off it if you have been on it for a long time, like you have.
I started to try and get off it at 2 years....it took me 3 years to get off it.
here is why.
i was taking 3 per day for years, then would go down to 2 per day for a week or two and then down to one per day....after a few days of one tablet per day i started feeling crappy in the tummy and losing appetite, so i went back up to 2 or 3 per day and started the cycle again.
after a while i was getting down to 2 per day, then one and finally going to zero per day....after 2 days of zero per day i was feeling like the crohns had come back big time!! I couldnt eat and had pain in the guts....so, naturally i went back up to 2 or 3 tablets.
this went on for a LONG TIME.
my doctor (who is brilliant) said that i was experiencing withdrawal effects and I should persist to stop taking it...he said i may feel unwell for a week or two while i got off the entocort. He was right. I got worse and worse, couldnt eat and had a gnarly headache for days......but it did go away, i started to feel a bit better after about 5 days, but had a persistant headache for 2 weeks and runny poo for about 3 or 4 weeks....all the symptoms were NORMAL for getting off it.....your body is addicted to the level or cortisol it is consuming....you body ceases to make certain hormones, this is where the problem lies....the hormones are important for digestion and other things and the long term cortisol injection has told your body to slow down the production of those hormones.....SLOWLY your body will start making them again, but you can expect to feel ****** for a few weeks......batton down the hatches and get some supprt, .
ONCE off the cortisone, god did i feel like a new man!!!!
I feel so good today.
good luck
