HealingWell
Search Close Search
☰

Post-steroid issues?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/26/2014 7:23 PM (GMT -5)
Not sure what to do. I tapered off of steroids a few weeks ago. Did so very slowly, so I don't think that's an issue. I've been on and off of them a lot this past year.

I've had no appetite the last few weeks. I got another severe migraine last week and my GI told me to see my primary about it. My primary thinks my body is out of whack from being on steroids for so long and trying to adjust back to normal. Gave me a shot for pain and nausea, which got rid of the migraine.

Next day I got terrible heart burn or acid reflux. Got so bad that night that I threw up. Since then I'm back to no appetite. Slight nausea. Haven't eaten at all today, and really don't want to. Still having diarrhea, but that isn't anything new.

My GI is wanting for me give Cimzia the time it needs to work. Wants me to stay off of the steroids (I would like this as well). But I'm not sure what to do here, or what is making me feel so bad? Is it getting off of steroids? Is it just my Crohn's kicking in after the steroids are gone? I don't know what to do. :(
Posted 1/26/2014 7:50 PM (GMT -5)
The fact you have been on and off of them [steroids] a lot this year should make the doctor suspicious of adrenal insufficiency. Even with a very slow taper, some people become steroid dependent and have difficulty coming off of them. When you saw the primary did he do any blood tests? A lot of the symptoms you describe are the same as adrenal insufficiency. Look it up and see if many of the symptoms fit yours. If so, go tomorrow and ask your primary to look into it.
Posted 1/26/2014 9:56 PM (GMT -5)
Go see an endocrinologist.
Posted 1/27/2014 3:27 PM (GMT -5)
Have a call in to my primary to see about some blood work. I thought about insufficiency too. Last night was rough, seem to feel slightly better right now, but that seems to change on a dime. Hopefully I can get some answers, thanks.
Posted 1/27/2014 4:11 PM (GMT -5)
Jen - I am still experiencing a lot of aches and joint pain and have been off steroids for 2 months now. My GI is sending me to a rheumatologist, but I really think it is from the steroids. It can take a long time to get back to normal after coming off them after extended use. I am seeing very slow improvements - maybe feel a bit better every month.
Posted 1/27/2014 4:13 PM (GMT -5)
Having similar symptoms these days. Sorry that you are suffering. I was told that the headache is caused by the sinusitis which is brought about by my GERD. The nausea and abdominal pain were thought to be caused by my rectal spasm and inflammation. Me too when they give me an antispasmodic shot, headache disappears. Never crossed my mind that this might be caused by my tapering of Entocort. My GI decided to put me on Humira and added pred 5mg.
Hope you feel better soon :)
Posted 1/27/2014 6:42 PM (GMT -5)
Had massive rebound fatigue and loss of appetite (didn't lose any weight though :-/) for several weeks after stopping steroids, even though I tapered the last 10mg really slowly at 1mg/week.

Your Crohn's might be returning, but to be honest, it doesn't sound like it's ever really gone away. Mine only fully went away on 40mg Pred; anything lower than that and the diarrhoea, etc. would start to return.

How long have you been on Cimzia for? When is it meant to start working?
✚ New Topic ✚ Reply