Advice on prednisone

And I agree with you. I think you need to stress this with your GI. You need to find a way to remain in remission but without prednisone. Have you been on Imuran for six months? If not you might need to stay on prednisone until the Imuran kicks in. However, if you have been on it for six months and you are still unable to successfully wean of prednisone it would appear that the Imuran is not working. If that's the case, it might be an ideal time to talk about the next step in treatment.

Sue

Im with you on this one... I have been on prednisone for 8 months as well and can't wait to get off of it. Everytime my doctor tries to ween me off I get down to 20mg a day and then I flare right back up again. I am allergic to imuran, so I cant even use it to help me ween of pred either. Although I have endured many of the unpleasant side effects of the drug... I do feel that its benefits outweigh them.
I know it seems like a long and bumpy road with no end in sight... but keep your chin up! We'll get off of 'em one day.. maybe not tomorrow, or next week... but we will :)
good luck to you!

My blood pressure seems to be ok. I went in for a pap in Dec. and they do your blood pressure as part of the physical and she didn't say it was strange or anything.
I got an allergic reaction to the 5ASA's...they give me pancreatitus...that was not fun.

I was throwing up bile and couldn't eat anything and I had really bad pain in my side. My lipase numbers were really really high too. Definatly not wanting to repeat that.

mythmoon, I was on Pred for two years. Didn't think I'd ever be able to get off of it. I felt like I had PMS for most of the two years -- short fused, trouble sleeping, muscle aches, my face got round, but I did manage to keep my weight gain under 25 lbs, I have eight more pounds to go to get back to a good weight for me. It was tough though because I was sooooo hungry all the time. I'd have a trucker's style breakfast and within 30 minutes my stomach would be growling. It was awful.

Remicade was the solution for me, I have been in remission since last summer -- it took a year of infusions to achieve a good remission, but there was enough improvement after a few infusions to keep trying, finally I was able to get off the Pred and remain in remission. I was ready for surgery if it didn't get to working, and I still will probably have the surgery at some point. I was in a flare for over two years -- I can't go through that again. If I flare again I'll probably decide on surgery pretty quickly.

Has your GI discussed Remicade with you? If you can't get your UC under control with other drugs you're a good candidate and should get insurance approval. If not, have you looked into the surgery? Most people who have it seem to only regret not having done it sooner.

Meesh

One of them (humira and remicade) is covered by my dad's insurance I just don't know which one it is. (can't remember at the moment)
I am hoping to never ever have surgery. I will try everything else on the face of the planet first before that. Just my own personal thing.

     Vibrant, you are just lucky you are feeling well.  Most of us in here cannot walk away from our meds.   I certainly hate taking prednisone as it raises my blood pressure to alarming limits and it gave me osteoporosis to boot.  However, it is the only drug which helps me achieve remission.  Your doctor should not have told you that Imuran or 6MP causes leukemia.  It does not.  They keep a check on your blood levels to make sure they don't take a drastic nose dive.  My white count is 2.4 which is kinda low but my doctor isn't alarmed because he said he knows the 6MP is working.  I also went to a gastric surgeon who is listed as one of the top notch GI surgeons in the US and he told me that in all his years of practice he only came across 1 patient who developed lymphoma while on 6MP and who is to say that patient wouldn't have developed the lymphoma even if not on the 6MP.  I know of seven people in this area (south Jersey, cancer capitol of the US I think) and NONE of them were on immuno-suppressants at the time they came down with their disease.

It's easy to know what the side effects are. All anyone has to do if they want to know the side effects is to do a search on Google. I won't list them here. It's bad enough not having any alternative but to take the medication or get surgery.

Vibrant2,

I understand the feeling. Diet, probiotics, vitamins, and fecal transplantation work so well for me. They work so much better than anti-inflammatory medications, which have some serious side effects. But then I have Colitis from taking too many antibiotics, from being a chocoholic, and from drinking too many beverages with HFCS in them. So I am a good candidate for alternative treatments. Not everyone is.

I hope I don't sound brash. We welcome your personal experiences with Colitis. That's what this forum is for.

Well I get to see what my GI says tomorrow and if she won't listen I guess I'm shopping for a new GI...any suggestions on how to change doctors?

Aziathioprine is Imuran, which I am on at the moment as well.

I was on steroids (cortisone first, then prednisone) for about two years solid and then on and off for about ten years. I was 16 when I started, and that was back in the dark ages of 1962 thru 1974. At first I was on 40 mgs but then I tapered, went up, tapered....same as everyone. There were not many other drugs for UC back then. If there were my doctors did not know them. I did not start Azulfidine until about 1977. When I started the steroids, I got the moonface and the appetite increase. I swear I could eat an entire Angel Food cake at one time. But I had lost 30 lbs in the first two weeks when UC hit me (at the speed of a Mack truck barreling down a highway). I went from perfectly fine to so sick in 24 hours.

Now, forty-seven years later, I have some residual effects. I have joints (ankles and wrists) that look like they had breaks though I have never had a broken bone. I got stretch marks on my breasts, and face, that showed up in my early twenties though I have never been pregnant. But I do NOT have osteo problems. At 63 my doctor is pleased with my bone scans and he feels my daily walking routine keeps my bones strong. My UC is as mild as it has ever been....so unlike those who get the disease when older, I got it at 15 and my worst years were from 15 through 40. I definitely saw a decrease in symptoms after menopause. Interestingly I got UC one month after my first menstrual period and I started getting better after menopause. I never could get pregnant and wonder if it had to do with massive doses of prednisone. No one seems to really have answers for me. But I am glad to have gone so long with this disease, still able to live a relatively normal life; go to college, work for forty years and retire healthy enough to enjoy some leisure time. I get a colonoscopy yearly and so far no signs of cancer (seemingly risk increases every decade). I still get mild flare but they do not last long.

I do hope sincerely that more and better meds or stem cells become available to help people with IBD. I do think those of us who live with this disease deserve a chance to be free of it. Sadly it has taken years for the public to even be aware of this disease and I feel those of is burdened with it have suffered alone and without much sympathy. I am thrilled this bb is here and we have each other. I am also thrilled that young people with the disease are being supported now more than before.

I know that pred is toxic in various ways even when on lower doses, but it was a joy for me fairly recently, to get below 15 .... at 12.5 and below I still have trouble sleeping but the joint stiffness and feeling of being all bloated disappeared. If I can just get below 10 I will finally start to get rid of the remaining moonface too. And below 7.5 I never noticed any effect of pred other than as a flare preventer. (Even going from 2.5 to say 1.5 mg could cause me to start flaring in the past.) In my case, if I can't get off it altogether I will go for surgery, but that's because I can't take this garbage anymore.