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A few Prednisone questions - experiences please

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Ulcerative Colitis
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Posted 9/4/2007 6:21 PM (GMT 0)
so I don't know if I need to take prednisone or not (for my kidney) and I will find out tomorrow what is going on there (hopefully) but I am going batty right now and have read some things and they talk about taking prednisone.  I have a few specific questions.

1. If you got moonface how long did it take you to get it after starting prednisone?

2. Did you gain weight, if so, how much? And did you eat more or did you eat exactly the same and still gain weight?

3. If you did not gain weight, did you have to eat less?  Did you eat the same? If yes to either was it very difficult? (does the medicine make you feel sick if you don't eat? I have heard it makes you hungry???)

Listen if the prednisone is what helps me then I am ready to go for it immediately.....however, I am already have a few pounds to lose and gained about 15 since getting married a year ago and fear having to buy new clothes and of course don't want moon face, I have so much going on.........but I know people love me and wont care, but I just want to mentally prepare myself.

Thanks!

Posted 9/4/2007 6:31 PM (GMT 0)

Hi there!

Well, I can say that I just got off Prednisone about a month ago. I was on it for about 3 months. It was a quick dosage for me to help get me back in remission. I have been on and off prednisone several times over the course of having UC. Basically, depending on the dosage of the pred, I guess is what gave me moonface or not...so, what I am saying is, I started on 40mg for about a month. I did develop a bit of a moonface but not to bad. There have been times when I was on a larger dose and yes, developed that moonface within the month.

I did gain weight. about 8-10 pounds. I did fine myself hungrier but I also felt so much better so I ate. I would say the weight gain happened over time. There have been times when I was on it though that I didn't gain much at all.

I personally tolerate prednisone very well. It does make me hungry but at times, it has made me feel sick too. It just depends sometimes. You never know though, everyone is different. I should mention too that I am 36 years old...if this helps at all. Best of luck to you with this.

Posted 9/4/2007 7:01 PM (GMT 0)
Unfortunately I don't tolerate Prednisone very well. I get pretty much every side effect in the book. :(  I've been on Prednisone about 4 times and hopefully will never have to go on it again as I'm doing great on Remicade and my last colonoscopy showed I'm almost completely healed from the treatments. In answer to your questions: 1. I got the puffy moonface and it appeared within about 2 weeks I believe. I think it all depends on what dosage you start and how long you have to take it for. I've always had to start at 60mg and have been on it a minimum of 3 months each time. 2. Unfortunately I gained about 19 pounds this last go round (Dec-Mar). I always find myself with a voracious appetite and feel like a bottomless pit. I'm still working on getting the weight off. Unfortunately it tends to stick on me since the gain is in weird spots (chest, mid-section, back). Gaining the weight and having the side effects isn't pleasant but if it makes you healthy then it's important to take it. As long as you mentally prepare yourself for any side effects that may occur, you'll be able to handle it well. Good luck and I hope that you start to feel better soon.
Posted 9/5/2007 3:29 AM (GMT 0)
GOOD LUCK~~~ I HATE PREDNISONE AND HAVE ONLY BEEN ON IT 3 TIMES BUT I DIDN'T GAIN MUCH WEIGHT(4-6POUNDS) BUT I GET THE REALLY BAD SIDE EFFECTS~~~ LIKE BAD BACK AND NECK PAINS AND I SNAP AT EVERYTHING. BUT THIS TIME W/ OTHER MEDS, IT SEEM TO BE WORKING. SO IT'S A GOOD DRUG, I JUST DON'T LIKE IT. I'M 29.


DIAGNOSED W/UC IN 2004
ASACOL 8 A DAY
PREDNISONE STARTED @ 60 NOW @30
BELLA ALK/PB 8 A DAY
IRON 325mg
Posted 9/5/2007 6:25 PM (GMT 0)

As all will tell you, and you have probably heard, each experience with prednisone can be different, and not all react the same way. Dosage and length of time are the biggest foactors in how prednisone affects a person. That being said:

I have been dx with UC for 3 years, and this February was the first time I was put on prednisone. Since then I have been up and down with dosage, but never able to stay off. Currently I am on 40 mg down from a high of 50 starting in July of this year. The 50mg was the only thing that got me out of my flare. Without it I was miserable; I will admit that. However, the side effects this time have been miserable. I have had problems with blurry vision, eye inflamation, cramps in the hands and legs, high blood pressure, moon face, shakes, moodiness, problems sleeping, and some hair loss. I have not had bad problems with weight gain this time because I was aware of how bad the hunger could be, and have attempted to make sure that I am not overeating. That has not always been easy, but it seems to be working. I am now on Imuran and Remicade with the hope that I can go off the prednisone, and more quickly than without the Remicade and Imuran. Why would one ask would I have gone on prednisone if the side effects for me were so awful. When the UC flare is bad, all I want to do is get relief, and prednisone does work. I will admit, as much as I hate the drug, when I was going to the bathroom up to 30 times per day (yes, 30) I begged to have my prednisone increased. Now, of course, I say that I will never take it again, but that could change. In short, it is a nasty drug for some people, but it is a drug that works, and properly medically managed, can be a godsend. There are definite precautions, and not meant for long term use, but it does have its place in the treatment of UC. The good news is that most of the side effects do go away when you stop using the drug. Not right away, but eventually. The other potential longer term issues (bone problems, cataracs, etc) need to be watched if you are on the drug longer than 3 months.

Posted 9/5/2007 6:31 PM (GMT 0)
I had my passport photo taken before I was on pred. I then travelled to Namibia on business while on pred and the security guys would not let me in the country because pred gave me this ugly moon face and I looked so different before and after pred. I also developed joint pains. There were times when I felt that the side effects of pred was actually worse than my UC symptoms

Posted 9/5/2007 8:09 PM (GMT 0)
thanks for your responses, I really appreciate it. Unfortnately or fortunately, if I end up with a certain type of kidney disease called minimal change disease the prednisone will likely cure it.....yes cure it! I would gladly put up with the issues to keep my kidneys, but am sure they are hell and feel bad that you guys have/had to deal with it. I am hoping to take predinisone am hoping it will be a cure for me. I don't know, was supposed to know today but the results were not in yet, now it's tomorrow and I hope it does not change. Will see what happens. Never thought I would hope to take it.
Posted 9/6/2007 12:41 AM (GMT 0)
I had to take Pred for a severe left-sided flare 14 yrs ago. Since I saw the near-blockage in my colon on the c-scope monitor & felt agonizing pain despite being shot up with Demerol, I didn't feel any need to dispute my gastro's Rx for 40 mg/daily Pred to start. It started working within a couple hrs & I was able to begin tapering dose on the 8th day. It was about the end of 2nd month or beginning of 3rd when moon face developed, but I got rid of that after a couple weeks. The major side effect otherwise, for me, was increased appetite. I had lost 15 lbs. in 12 days due to flare-- so that weight gain on Pred was not an immediate concern. Overall, though, I did remain ca. 12 lbs. over my previous healthy-state weight when I finally got off Pred after 4 months. I kept up calcium intake while on it & did not feel any joint pain at the time; however, I did have periodontal issues a couple yrs later that could have been post-steroid effects. In my case it definitely reversed the severe flare with minimal disruption to the rest of my bodily functions. I was able to get on to 5-ASA meds after the 4th Pred month. It does help to think positively about the med one is swallowing-- trusting my gastro enabled me to proceed. Good luck to you with the kidney test results/diagnosis. Getting at the facts is a huge part of getting well. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon, which is responding)




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Posted 9/7/2007 3:43 PM (GMT 0)

I have been on Pred for over 3 years now. 

I got moonface within around 3 weeks of starting 40mg. And although It lessens when I taper - I can never fully get rid of it. I really hate it.  I also have eye and ear problems caused by pred.

I dont gain weight on pred as im always on the darn toilet but I get a spare tyre around my waste and so my trousers no longer fit.  My apetite goes through the roof if im on more than 20mg. Hair loss is also a real pain.

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