New member, old problems

[Molechaser]

Hi.

I'm 36 years old, and I was diagnosed with Crohn's disease 13 years ago. Back then, I had a bowel perforation, peritonitis, resection, temporary ileostomy, anastamosis, and a follow-up surgery to fix incisional hernias from the first two surgeries. No symptoms since.

All of a sudden a few weeks ago, the symptoms came back. Not quite so bad, but we caught it earlier this time. Spent a while in the hospital (NG tube, hydrocortisone, dilaudid, antibiotics), and now recovering at home in the first stages of tapering from oral prednisone.

I'm finding the prednisone very difficult to deal with. At 40 mg, I had insomnia, dizziness, mild nausea, and constant hunger. Now at 35 mg, those symptoms have gotten better but haven't gone away, and I have the withdrawal headaches to deal with. Here's hoping the doctors can find a better drug solution.

 

[xJillx]

Hi and welcome! I am sorry your long remission had to come to an end. Were you taking any maintenance medication? Hopefully, pred will do its job and stop your flare in its tracks. And many on the forum suffer from similar side effects. Simply search prednisone, and you'll get dozens of threads on the topic. I hope your side effects continue to lessen as you taper down. I look forward to seeing you around the forum!

 

[ameslouise]

Hi Molechaser - Interesting name. How did you choose it? (Are you an dermatologist?!?!)

The pred taper can be really tricky. How long were you at 40 mg? If you are having withdrawals going from 40 to 35, you may have to taper more slowly, like by 2.5. It's frustrating, I know. It once took me a year to taper off from 40 mg!!

I hope you can find a med that works for you and can keep you in remission a long time again!

- Amy

 

[Molechaser]

Thanks, Amy and Jill. I'm going to see the gastroenterologist on Friday, and I'm hoping to discuss how to do the taper. I don't normally experience adverse side effects from drugs at all, so getting both the high-dose side effects and the taper side effects has me really flummoxed.

Jill, to answer your question, no, I wasn't on any maintenance medication. I had tried quite a few (Pentasa, 6-MP, antibiotics, probiotics), but the results were just as good with no drugs and a low-residue diet as they were with the drugs and a low-residue diet, so the doctors decided there wasn't much point in continuing the drug regimen (along with the side effects and blood tests needed to do so). The prednisone seems to be working right now (knock on wood), and I think we'll probably try something else as I come off the steroid.

Amy, to answer your question, dermatologist was a good guess, but "molechaser" is actually a slightly derogatory but affectionate term for a process engineer (in the same way that mechanical engineers are "gearheads" or electrical engineers are "sparkies"). I used to work as a process engineer in the oil production industry. Currently, I'm a patent lawyer.

Thanks,
Chris

 

[Jer's Girl]

Hey Chris! I hope you are feeling better soon and not on pred for too long! Welcome to the forum!

 

[David]

Welcome to the forum, I'm glad you found us I'm sorry to hear your symptoms have come back after all of this years, you poor thing. *hugs*

I hope they're going to be able to begin tapering you off soon!