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Symptoms back after steroids

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Crohn's Disease
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Posted 8/24/2016 8:51 AM (GMT 0)
Hi.
Ive been tapered off my steroids...finished on sunday...and the last week or so feel as though symptoms are coming back. They never went away fully. Still had crampy feeling and a bit of tiredness some days. But since ive been down to 1 tablet and now off i cant get out of bed in a morning. Regardless of how well i sleep. Diahrear is coming back. Bit of blood yesterday and mucous hasnt gone away at all.
Could.this be it all cominf back again...anyone els had this
Posted 8/24/2016 9:07 AM (GMT 0)
How long were on Prednisone, and did you do a weekly taper? You might have a steroid dependency. This is quite common. If so, you might need to go back on a moderate dose, and taper more slowly. You should also be transitioning to a maintenace medication. Has your GI discussed any of this with you?
Posted 8/24/2016 5:23 PM (GMT 0)
Are you on a maintenamce med? If not, then when you go off steroids you'll most likely flare.
Posted 8/25/2016 10:25 AM (GMT 0)
Hi. My consultant is useless. Not seein him till mid sept. He didnt explain anything to me. And im new to all this. I was on for 8 weeks. Startin with 8 steroids, goin down 1 a week. Im on a anti inflammorty. Only have 3 left. Useless
Posted 8/25/2016 12:56 PM (GMT 0)
Wow, that is not good. What is the name of the anti-inflammatory?
Posted 8/26/2016 7:26 AM (GMT 0)
Yeah, unless you are transitioning to a maintenance med then I think it is inevitable that your symptoms will just return as soon as the pred levels are low enough. The only time prednisone as led to a true remission for me was when I started tapering while starting Humira at the same time. Any other time symptoms just returned once I got to about 20mg or so.

Are you in the US? If so, I would call your doctor and get the ball rolling on a medication change. You said consultant though so I am guess that is UK and I am not as familiar with the accessibility to and choice of doctors there. I would be calling my DR and insisting on some guidance or I would find another ASAP.
Posted 8/26/2016 6:39 PM (GMT 0)
Thanks for replying. Its octasa metazaline or something like that. I have been on the anti inflammatorys since the start so they should have worked. Maybe the ateroids just werent going to work for me. I know they dont for some people.
I am in the u.k yes...i have rang and asked for a new consultant and theyve agreed. Unfortunatrly my next appointment is going to be october.
Posted 8/26/2016 6:55 PM (GMT 0)
Do you mean mesalamine? I think the UK name of it is mesalazine? I'm amazed your doctors put you on it - studies show that it's less effective than a placebo for Crohn's.

So it's not that the steroids are useless, it's your maintenance med that is useless. Steroids will only work for as long as you are on them at higher doses. Once you start to taper, your maintenance med is supposed to kick in. Steroids just help calm things down until the maintenance meds can take over. So you need to get on some different meds, like biologics like Remicade or Humira.
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