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Crohn's Disease Forum » Support Forum » Vent Away » The Miserable Prednisonites Club


 
01-04-2016, 07:36 AM   #691
ron50
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I had ibs most of my life with several sessions of duodenal and peptic ulcers. My brother got the ulcerative colitis and proctitis. He has had it for forty years and has had an amazingly good life just on sulfasalazine and prednisone suppositories. On flares he has a week of prednisone and is fine. Unfortunately he suffered a prolapse last year and had to have a sigmoid colon reconstruction. He still has problems with pain and irregular bowel habits. Mind you he is 71 now and his doc does not understand how he survived this long.
I missed out on the uc and Crohn's and went straight to stage 3 c colon cancer into six lymph nodes . Lost some colon and had chemotherapy. I have survived the cancer for 17 years but the chemo is still dogging me. I was diagnosed with minimal change disease of the kidneys. Unfortunately I had a rookie nephrologist. The treatment for MCD is prednisone. He had me on 75mg daily for nearly 18 months and another six months of taper. They weren't sure my adrenals were going to kick back in. I looked like humpty dumpty and to this day I don't know how I did not kill myself or someone else. I t is the most miserable drug I have ever been on and that includes chemo. It put me into type two diabetes and I lost 7cm in height and a lot of calcium . I have been taking calcium supplements for years but I still officially osteo penia. He got my kidney dx wrong it was not MCD and three kidney biopsies have not put a name to it. I am into nephrotic syndrome and untreated I lose up to seven grams of protein a day thru my urine. I have been on cyclosporine morning and night for over 18 months and it is keeping me alive. I have been diagnosed with auto immune kidney disease ,auto immune neuropathy, auto immune endocrine problems with low testosterone and under active thyroid. auto immune psoriatic arthritis and auto immune hepatitis. I was in a lot of pain so some well meaning doc ramped me up to 80 mg of oxycodone as Targin. I finished up with hypo algesia after two years. The oxy was causing more pain than it stopped. I am currently on a 32 week taper to get off it (I thought pred was bad) . All the time I have been on oxy I have had to take two dulcolax and two coloxyl with each dose to alleviate opiate induced constipation. It is not supposed to be a problem with targin but it is big time. I was told I could also take up to five sachets of movicol a day. What a wonderful lifestyle I lead. With hindsight I may not have had any treatment for the cancer. I have refused to take prednisone again except for a short time to see if I had auto immune hep. My liver functions dropped into the black immediately. My neph said he may use more if the hep flares. I just looked at him . No way I don't like pred and it don't like me. Ron.
11-17-2016, 09:31 AM   #692
The Real MC
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Join Date: Mar 2013

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I landed in the hospital a few weeks ago with a partial intestinal blockage.

They gave me the NG tube, painkillers, IV nutrients, pentasa... and NO steroids. Discharged on Thursday after three day stay, back to work the following Monday.

Contrast that with a similar episode two years ago - they gave 125mg of steroids 4x a day while in the hospital, no taper off period after discharge, my body was way out of whack and had to be on disability for 5 weeks.
11-30-2016, 10:41 AM   #693
Alliesavage
 
Join Date: May 2016
Location: Seneca, South Carolina

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I had a job I really loved 😢 I got put on prednisone and flipped out on a customer. Of course I got fired. I'm normally a very nice person but prednisone makes me a psycho!!!!
11-30-2016, 10:53 AM   #694
ronroush7
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Location: vienna, Virginia

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I had a job I really loved 😢 I got put on prednisone and flipped out on a customer. Of course I got fired. I'm normally a very nice person but prednisone makes me a psycho!!!!
I am so sorry.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
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