Night sweats, nausea and stomach pains oh my....

[oldcrow]

I have been diagnosed with Crohns for several years.....went through the gamut of meds and finally got on Humira almost a year ago...and it worked well. Until lately. I wake up almost every morning around 3 or 4am with night sweats and nausea. It last four to six hours and then slowly fades away....nausea is still there but not nearly as bad. When this happens it almost completely shuts me down. Getting dressed is even difficult. I went to my Gastro (they ordered labs and a cat scan - both came back negative except for high wbc (19) but that was attributed to the prednisone. And the night sweats kept coming....so I went to my primary doctor to see if it was something else....he ordered labs and a cat scan. The next day I was so sick that I went to the ER....they gave me nausea meds and something for the pain and then ran blood tests and cat scan....which came back negative....my wbc had gone down to 13 which was nice. But the night sweats and nausea still come....I dread going to bed fearing the mornings. I have missed quite a bit of work this year and still I feel horrible in the mornings.
When I was first diagnosed the PA gave me a business card with their number on it and told me that I should never suffer and should call them whenever I start feeling bad. Which I did - didn't talk to anyone - had to leave a message - and then was told they would get back within 24 hours.
I feel like I am in a boat without a paddle....I don't know where to turn to next. I finally talked with the PA last night and they are going to schedule a colonoscopy. I would have thought a cat scan would have picked up anything going on so now sure why they want a colonoscopy....a little voice says they are buying time.

 

[Jennifer]

Hello oldcrow and welcome to the forum!

How long have you been on Prednisone and what dose are you taking? Have you ever missed doses? All of those are possible side effects from Prednisone and possible withdrawal symptoms if you stopped taking it suddenly without a proper taper schedule. Has your doctor mentioned this possibility or did you start Prednisone recently to try and control your symptoms?

If a CT and your blood work don't find anything and if it's been a while since your last scope then doing another scope is fairly common. Perhaps a visual look with biopsies will tell a different story than what the CT scan showed. Were your CT scans done with contrast?

 

[oldcrow]

I started on the prednisone myself when I thought I was having a flare up and my Gastro people didn't call me back....I had been on a low dose (10mg I think) for two weeks and then I quit two days ago.
I am not sure if they were done with contrast - I didn't even think to ask.
Thanks for responding.

 

[Jennifer]

Over 7 days requires a taper. Guessing your dose isn't good either. Taking steroids without proper guidance can be dangerous and even life threatening. http://www.crohnsforum.com/wiki/Adrenal-Insufficiency-Crisis Although that was a low dose if it was 10mg and two weeks is fairly short so you may feel mild symptoms from stopping it suddenly.

If it was with contrast you would have either had an IV or would have drank and oral contrast. If you just went in and out of the machine then there was no contrast.

Hope you're able to get the scope done soon! Keep us posted.

 

[oldcrow]

Thanks again....yeah, I had tapered but when I got down to the lowest dosage they had me stay on it.....but as of today I am three days without prednisone and I am starting to feel better. The severe night sweats are gone and I am only nauseous for a few hours in the morning....instead of 5 or 6 hours. I think, I hope, I will never have to go back on them again if that was the main culprit of my symptoms...I felt horrible.

Thanks again for responding....I don't know anyone personally with Crohns or even IBS so it is nice to talk with someone that "gets" it. I should have come to this forum months ago.