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Second Flare and First Round with Prednisone

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Ulcerative Colitis
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Posted 8/2/2013 2:40 AM (GMT 0)
Hi Everybody!
I was DX with Ulcerative Proctitis in April, 2013 and thought I was in remission. I suffered longer in the first flare with inflammatory arthritis in my left leg than with bowel symptoms. This time, I am having horrendous cramping, burning, inability to eat anything (even clear liquids), tenderness, bloating, passing gas, mucus laden soft stool or full blown diarrhea. ANYWAY. Its my first time being treated with prednisone and generally speaking, I've read that prednisone works but is also not good.

Can you please share with me your experiences on this drug both good and bad.

I am currently being treated with Canasa 1000mg suppositories 1 at night, Apriso .375g 4/d, Cipro 500mg twice a day, and a Prednosine taper? for 4 weeks PLUS the HUMIRA injections every other week.
Posted 8/2/2013 6:34 AM (GMT 0)
In my experience (I've been on and off prednisone each time I have flared up since getting diagnosed, roughly 4 years ago, and at a rate of about 2-3 flareups a year, that makes a decent number of times on the drug) Pred is, as you have said, a mixed bag.

The good: it totally stopped my flareup and put me in remission. I had more energy, felt better, and the effect was almost immediate. As you know, the difference between a life of remission and life during flareup is the difference between some numbers impossible to subtract.

The bad: there are many risks of being on pred. A quick google search will reveal this to you. The side effects can go from bloating & weight gain, to depression and osteonecrosis. Yucky. This is why we all want to avoid going on pred.

How much pred are you going to be taking? This will really be a big factor in your body's response.

What I notice coming on is an increase in irritability. Just unexplained moodiness and aggravation with the people around you. This is because your body is suddenly being flooded with an outside source of hormone at greater levels than it can produce. Just warn the people close to you that you will not be yourself.

I also notice an increase in energy levels. Or perhaps, a return of energy levels. It is very deceptive. One of the biggest dangers of prednisone is FORGETTING that you're taking a steroid. Never forget that. For instance, last summer I forgot that and got back into weightlifting. As I was coming off the pred, I injured my shoulder, since my body was not producing enough pred to deal with the inflammation. Woops! ;)

Coming off pred is a whole other matter. Depending on your dosage, taper for a long time. Go down by increments no greater than 5mg. Your body has become dependent upon the steroid, and will start going into withdrawal if you stop it suddenly. Nevertheless, (as I am experiencing right now), when you fully come off, it is likely you will feel fatigue, less motivation, and possible moodiness.

Always remind yourself that these are the effects of a very powerful drug.

All of that said, don't worry. It will most likely help you kick this horrible inflammation back. To me, pred has been a life saver. It needs to be used responsibly and not depend on. During your taper, and once you're off it and in remission, get to researching dietary and lifestyle changes that could help keep your UC in remission. Everyone's answer is different, and I believe the trick is to just keep searching.

Good luck :)
Posted 8/2/2013 1:00 PM (GMT 0)
Pred has a purpose and has helped many, myself included, out of severe flareups (I had 12-20 bms a day, random pain). Pred is a drug that has a lot of nuisance side effects that seem to randomly hit people (insomnia, mood swings, acne, energy bursts, increased appetite that leads to weight gain, moonface, and so forth). Nobody gets all of the side effects, but most get some of them. Except for rare exceptions, the side effects go away as you get to lower dosages of the drug and are gone once you are off it (while not normal, some have got the severe side effects right away). Any weight gain from pred can take a while to loose.

I am sure Pluot will swoop in any moment and call me ignorant for saying anything good about pred. She had bone loss right away from it, which to my knowledge isn't typical, normally only something that happens after very longterm usage of pred. Everybody's bodies respond differently though.

For me, pred has made a world of difference, and I can deal with the increased appetite (helped me regain weight I lost during the flare), and acne it gave me.
Posted 8/2/2013 2:18 PM (GMT 0)
I've been on and off of Pred several times. The worse side effect I have had is joint tenderness, chubby cheeks and chubby lower belly no matter how thin I got, and some acne.

However, once I taper off SLOWLY, the weight comes right off as long as you eat well and exercise. I know there are a lot of other side effects of Pred but not everybody suffers from them.

I do think the hardest one to recognize are the mood changes. Apparently I act like a complete dick when I'm on Pred. I don't think I am, but my wife says that I get very self invloved and not very nice. Of coures at teh same time I'm also flaring and on 5 other meds too...
Posted 8/2/2013 2:47 PM (GMT 0)
Head like a basketball is my worse symptom and maybe a little moody at high doses.
Posted 8/3/2013 1:59 PM (GMT 0)
Hello All!
A HUGE THANK YOU to all who answered my question. As a new member to the UC group, it is almost overwhelming to have a sense of support from those who can understand what I am going through and who have REAL answers from REAL experience. so thank you.

I did fail to put the pred Mg earlier. This doctor prescribed it as a month long taper.
40mg/day week 1
30mg/day week 2
20 mg/day week 3
10 mg/day week 4

Now, based on what I am reading, the 5 mg per taper is what you all are suggesting. Not sure the reason for this prescription being the way it is. I am on my 3rd day today and I am feeling much better with the energy burst you mentioned. Right away Acid reflux began and its horrendous, especially since I can't eat much at all. Today I am very hungry. With my first flare it was a sign I was healing, to have my hunger return. And that seems to be a hard part in that I am SOOOO hungry but can't eat and it makes me moody. And on that note I am going to the kitchen to make an egg.

Thanks
Posted 8/6/2013 2:44 AM (GMT 0)
Quick question...

When you are taking your 40mg, do you spread it out over the day or all in one go?

I'm just curious as I have a similar dosage bottle as an "emergency" kit for when I'm travelling (have never had to use it), and on they label it doesn't specify.

I'm assuming you spread it out to something like 10mg every 4 hr, then every 8 hr, 12 hr, 24 hr?
Posted 8/6/2013 2:48 AM (GMT 0)

bssharpie said...
Quick question...

When you are taking your 40mg, do you spread it out over the day or all in one go?

I'm just curious as I have a similar dosage bottle as an "emergency" kit for when I'm travelling (have never had to use it), and on they label it doesn't specify.

I'm assuming you spread it out to something like 10mg every 4 hr, then every 8 hr, 12 hr, 24 hr?

when i was on 60mg, i took it all in the morning with the hopes of being able to get a little sleep each night.

i found it a little better than splitting it but it was marginal at best. insomnia on prednisone was hell for me even with some of the most powerful benzos....
Posted 8/6/2013 4:32 AM (GMT 0)
Garbanzoguru, I don't see your signature, but what else are you taking besides pred. Using pred three and four times a year could mean you are dependent on it. I was told that if I had to use pred more than once a year, I needed to be on a stronger maintenance med than mesalamines.
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