PredniSONE and dilaudid

Hello,
How long do side effects last after completing steroid treatment? I've been off of pred for 4 months for crohn's first time. I was on 40/30/20/10 for a 6 week period. When I got to 30 my legs went into extreme pain. They felt like they were on fire, burning knees. Went to several doctors. One said steroid withdrawal, one said inflammation of nerves from Crohn's. Neurologist put me on neurontin to get off of the pain meds. I am still in excruciating pain and wondering if it really is steroid withdrawal. I can barely walk at times with extreme sharp pains, like someone is stabbing me in the legs. Can't stand for long periods of time and pain pills barely touch the pain. During steroid treatment, they gave me 3 rounds of Dilaudid in the ER and I was still crying, and I don't cry. Has anybody ever had this effect this long after being off the drug??

They think that I have either crohns or ulcerative colitis. I have tried antibiotics, lialda, mesalamine enemas, with no improvement. After another colonoscopy they put me on prednisone at 40mgs, 30, 20, 10, then 5 decreasing weekly. Well the first week was okay. I had some of the side affects, insomnia, extreme hunger, and crazy. I could deal with that. But then when I decreased down to 30mg, my body flipped. I awoke from the middle of the night with burning pain in the knees. So bad I took 4 ibuprofen and threw myself in the tub with epsom salt. I thought okay that was weird because I have never had a joint pain in my life. I saw the gastroenterologist that day bc I was still having abdominal pain. He totally blew off the knee pain and said he had no idea what that was. I thought okay maybe it will go away. A few days went by and nothing. 3 days later and I awoke one morning crying in pain because of my legs. I called the on call doctor who also said he had no idea and go to the er. So I went crying hysterically for 4 hours. Even after 3 rounds of dilaudid I was still in pain. They suggested a Rheumatologist. So I went to one a week later who said I was going through steroid withdrawals. And there is nothing we can do but treat the symptoms of pain. I am now down to 10mgs have been out of work for 2 weeks and am absolutely miserable with severe leg pain, muscle weakness and fatigue. He also adjusted the drop down increments to 5 instead of 10. Anyway I will never take this drug again and I think they rushed to this one. Just wanted to share. I am glad I found this website because I went from a fully functioning physically fit 28 year old to a crippled crying crazy person. I think I was scaring my husband, honestly, until we both read some of your postings which were similar.

I was a very healthy 23 yr old female. I cant believe that I finally found someone going thru almost what I am going thru. My name is Liane and My life changed on July 7th, 2007. I went to the hospital for frothy urine. They told me it was a UTI and gave me Levaquin for 7 days. I took it for only 5 days cuz ( I was allergic too) then were gonna start me on macrobid. Mean time my hands,face, and bottom half began to swell up. Me thinking it was from my period but this was different. I work in a jewelery store and once my rings that are a size 6 DID not fit at all I panicked. I had extremely bad back pain, high blood pressure. I did not feel same. On July 13th (Friday) I went to a hospital here in southern california and talked to a doctor and she said.."sweetie u don't have a UTI, I don't wanna scare u but I think that U have a Kidney Disease called Minimal Change Disease"!!!! WHAT!!!! Am I gonna die? She says no but come Monday u need to see a specialist and confirm. Now here is a Lasix pill to help take some of the water weight that u have gained away. Its already about 1:30am on Saturday the 14th. She says u will not sleep cuz u will be urinating all night. I said well anything to help me, i had went from a very healthy 5' 7" 155lbs woman, I worked out in the gym 5 days a week with my boyfriend who is a Police officer and bodybuilder for fun, so me swelling up and devastated me. I took the pill. and went to sleep. Nothing happened to me. That meant something was wrong. Later that day Saturday I felt BAD. My face kept swelling, blood pressure kept going up, heart racing. I went to E.R and told them I felt like I was gonna die, I think I have minimal change disease I need a specialist now. They admitted me for 5 days. My specialist came in and saved my life. I had a ultrasound and kidney biopsy and they confirmed what I already knew. I had Minimal change Disease. I ended up being allergic to Dilaudid, and compozine in the hospital. I was released on the 20th of july. and now began my treatments. 3 x's a day of Prednisone at 20mg each, simvastatin 20mg once a day for high cholesterol now, lasix 20mg once a day, and omeprazole 20mg once a day to prevent ulcers from the Prednisone., I hate the Prednisone. I broke out so much on my face. And its not pimples it bumps. I wake up every morning at 5a.m with nasty heart burn. then wake up every 2 hours after. Doctor told me to take all my meds at once and it helped a bit but still not completely. I too feel bloated in the mid section. I still suffer from edema in my legs down to my ankles. During the day gets worse but once I put my feet up and elevate them I'm OK. I have bad mood swings I don't know how my loved ones put up me. One minute I cry, 20 minutes I'm happy and wanna go out for a walk. This drug is gonna help me but then Do I really need to put myself thru this? But there is not other way. Just thought of sharing my story.