Prednisone- a positive story

Hi there,

about a month ago, I was told by my Gastro doctor that enough was enough-- that I had to go on Prednisone or I was going to be hospitalized. I was sick. I have ulcerative colitis. I had lost about 15 lbs in three weeks, my CRP inflammation was through the roof, iron levels all time low, I was having to go to the washroom about 25 times a day, and there was blood/mucus ALWAYS in my stool. Oh, and during all of this, my relationship ended. Not a great time at all-- maybe one of the toughest times of my life.

Because I was so beat down, I didn't argue about the Prednisone. I had refused to take it time and time again because of all of the awful side effects I'd heard about and because of stories I'd read on-line, I knew that Prednisone was a double edged sword-- both a miracle and a menace. I had been taking Mezavant for years, and between that, diet and stress reduction, I was usually able to get things under control. But this time I couldn't.

Anyway, to make a long story short, I was so SCARED about taking the Prednisone because of all of your harrowing stories I'd read on here. I was so emotionally/physically spent that the thought of feeling crappy on the inside and then LOOKING crappy on the outside was too much. But I started taking Prednisone because I really didn't have a choice, and because I knew deep down that feeling better on the inside was 100% more important than how I looked. That was hard for me to actually believe for a while, and hard for me to admit on here now. But the truth. Unfortunately, we can get so caught up on how we look, that we almost make decisions that could seriously jeopardize our lives.

The first few days I was obsessed with noticing side effects. I for sure became a little anxious at first, and I also had bouts of insomnia. I got one crazy huge zit at the beginning, but nothing since. In terms of the moon face, weight gain, hump back, facial hair etc...I have been blessed to not have those things so far. I am now in the stage of treatment where I'm slowly reducing my dose-- was at 40, I'm not at 30mg and will decrease by 5 mg every week until the beginning of Aug. In terms of anything preventive I tried, I did the following: I took 1000 ucs of Calcium, and vitamin D. I took a multivitamin, a potassium supplement (it's supposed to prevent sodium retention), started to workout when I had the energy, lowered my sodium level and drank a TON of water. The good news?! I'm doing so much better! I feel like myself again in terms of energy, and my stomach? At the most 8 times a day and no blood/mucus!

The reason I'm writing this post is that when I first decided to go on Prednisone I went on forums like this and read story after story of people suffering through horrible side effects. I want you to know that if you are one of those people l I feel for you, and wish/hope that all of you are doing well, that you are feeling good and strong and being strong. I wanted to post my story, just so that anyone who did research like me, can see that sometimes there aren't real side effects and that feeling better (man, am I feeling better!) is the more important thing. If Prednisone is going to help you, do it. Don't waffle. I would take any of the side effects to feel the relief/recovery Prednisone has given me. This might be easy for me to stay with no side effects, but I hope I'd say the same even if the opposite were true.

My hope moving forward is that I can stay under control and not have to go to these extremes again. Like all of you, I know that this isn't in my hands. That ulcerative colitis is a strange and mean disease that doesn't make a lot of sense, and doesn't allow you to really trust your own body at times. That's a hard thing to feel, that feeling of not always trusting your own body.

Finally, I just wanted to thank all of you for your courage to post your stories and questions. Reading what you have written really helped me, and I hope my post helps some of you-- at the very least, puts your mind a little bit at ease. Please know that I can't promise you will have a side-effect free experience, but please know that it does exist, or at least has for me so far.

Prednisone is a miracle drug and should be tried by everyone (ONE TIME) that doesn't respond to other treatments because it will work perfectly fine in most people, while they are on it. The side effects are inconsequential compared to it's benefits and many people don't experience many side effects. The main problem is that in most all cases prednisone only works while you are on it and it does not work after tapering to lower doses or off. It is hoped that whatever maintenance med you are on concurrently with prednisone do the trick of keeping you in remission once the pred is tapered off. If it doesn't then you need a new plan. YOU ABSOLUTELY CAN'T TAKE PREDNISONE LONG TERM. IT WILL DESTROY YOUR BODY, NO IFS AND OR BUTS, GUARANTEED. Using prednisone long term to control UC symptoms will cause you many more problems than the benefits you get and you will 100% regret it. I hope your maintenance plan is good enough to work once the prednisone is tapered because in a way it is like an addictive drug in that it works so well while you take it and then you get worse when trying to get off, causing you to want to go back on it, and that's when it gets you and destroys your body.

I had nothing but praise for Pred for the first year, when I was on and off it about 50/50. The second through fourth year I was on Entocort which "doesn't have systemic effects," and felt it was more good than bad. After that, I started paying the bill for those four years of partial relief. Avascular necrosis, diabetes, bone fractures, dental problems, and a cataract. So far. The fun part is, it's the gift that keeps on giving. After not touching the stuff for eight years, I know that long-term side effects could still show up in the future.

It's a seductive drug because it does make you feel good. Just be careful.

@ByeByeUC what irreversible side effects did you experience later on?

I didn't catch the part of still going 8 times per day while on 30mgs. That really doesn't bode well for being able to get off. I'm sorry to say that you undoubtedly will get worse as you lower the dosage, eventually bringing you back to square one all over again unless you stay on high dose pred or have to up the dosage back up to the higher level. Unfortunately, that is the prednisone trap and that is exactly what causes the long term dosage problems such as some posters have reported what happened to them. It's not a question of if, it is a question of when. Long term issues can deal with the effects of large weight gains, diabetis, and bone loss issues such as easier bone fractures and osteoporosis (which can lead to acute walking difficulties), not to mention a miriad of other possibilities, most worse than UC itself. I am in a business where I have seen the damage done to those with autoimmune diseases where the patients had been on long term high dose pred as a constant treatment for their disease. It's not pretty. It makes 60 year olds look like 80-90 year olds.

cindy: What is it that you expect a new doctor to do? They all read from the same book. There are no doctors out there with a magic pill that no one else knows about. Please read up on the options available in the resources tab at the top of the page. I'm all for being your own advocate and even changing doctors when necessary but you are likely to change doctors only to find out that they recommend Asacol, Lialda, prednisone and remicade. Have you ever done rectal meds, probiotics or supplements? There are several different treatment options available but they are all trial and error and many of the meds have just as many side effects listed as the remicade that you aren't crazy about.

Garylouisville: I am not looking for a magic pill...I have already found something that works for me. So, what I am hoping to find out is whether or not all doctors feel as strongly about NOT prescribing Prednisone as mine does? I just do not think that it makes sense to go on a drug like Remicade if I can control this disease using Prednisone one month out of the year. What brought me to this site was searching for what is considered "long term use" of Prednisone but as someone else pointed out, there is not a concrete answer for that. Yes, every year when I flare my doc prescribes Cortenema which doesn't work so it just prolongs the flare until I beg for her to give me the tablets and finally she does and it gets it under control within a week. So my question is for anyone that might know...what is worse, years of Remicade infusions (because you do not stop that if it is working) or 30mg of Prednisone for one week a year tapering completely off within a month? Plus, I know the later treatment works and I do not even know if Remicade would.