Just took first dose of Pred...any words of wisdom or encouragement?

Hi all:

I was all set to start the pred a couple weeks ago but I started with a cold/sinus infection so I decided to wait. It's not all the way clear, but better, but I couldn't wait any longer bc of my UC symptoms.

Now I'm sitting here waiting to see what kind of roller coaster this will be. I'm starting 40mg for a week, then taper down 10mg each week.

I told my husband..."I just don't want my body to be screwed up for life! Oh wait. ..I have UC, it already is. I just don't want it to be more screwed up for life! " :) It amuses him that I manage to keep a sense of humor.

Any recommendations on handling the pred? I've read plenty, just seeing if there's anything else to know!

Thanks all!

Your tapering schedule is only a tentative plan. Don't taper just because the schedule says to if you're not feeling better. Check in with your doctor a lot -- you might feel like a pest and they might treat you like one, but if you've never used prednisone before, you really should not be expected to manage your own taper (why docs do this I will never understand).

Take your meds at the same time every morning and do not forget or skip a dose. Stay well hydrated and don't drive yourself crazy with worry. The likelihood of experiencing long lasting side effects due to ~4 weeks on prednisone is extremely small.

Also, on Prednisone the second time... I used this brief surge of energy for good instead of evil. I cleaned the house. Prednisone allowed me to catch up with a lot of things I had slept through.

I also sorted fabric and went through my wardrobe to donate everything I didn't love.
(My very smart and patient husband actually hid everything in the attic so I could look through it all with a clearer head.)

One thing I noticed was at every tapered dose I would see a slight increase of symptoms, but it never lasted more than 2 days then stabilized. I had a tough time with fatigue, depression and mood swings. Make sure your husband recognizes these as symptoms so he is forewarned, you might warn friends/family/employers as well. Just try to live up to your interesting name :) Best wishes.

You know, when I took oral pred I'd wake in the morning with a ridiculous amount of energy and apart from a little aggression, I appreciated the boost!

I know some don't fair well on it but think about it this way: it's your fast track to remission. Might not be the ideal way to get there but most people don't get long term consequences from using it when necessary in short bursts.

Thanks for weighing in guys...

My husband has been warned...lol

My symptoms are lots of gas/bloat, blood and mucus, strangely no D. Urgency picks up sometimes. And then I might have a normal day in there. Max is 8 bms per day, occasionally just 1 or 2. It's not real consistent right now like my initial flare when I was dx.

I take 2 Lialda twice a day.

I would be prepared to have loads of energy. If you have any tasks around the house you've been wanting to accomplish, this may be a good time to do them... The other thing is to try to keep your diet similar to what is was before pred because it can make you very hungry. I would also have sleeping pills on hand. You may not need them but it's best to have them. I can never sleep on a high dose.

Hi Amy . I just finished pred. ( My first time too) Was on it for 6 weeks. Started with 40 mg for about 8 days and started with the tapering.

The hardest part for me was when I started tapering. At about 10 mg I became shaky, constantly hungry for bad foods and had severe fatigue. Even now being off of it, I have no energy and at times feel very weak. I also had a pounding headache for two days.

Someone said it takes about 4 to 6 wks to feel better. I stopped taking it at 5 mg. I would not do that again. I think I stopped too soon. I should of done 2 mg for another week.

Also try not to take it to close to bed time. i found if i did that i could not sleep.

It is good that you can keep you sense of humor though all of this . What else can we do? Good luck. Keep us posted.

Nssg...I know it will be temporary, but I'm hoping for the energy...I've been so tired mentally and physically from the length of this flare...I would love to feel like doing something.

ipoop...I'm taking a calcium supplement but just eating an extra banana. ..will that be enough? I thought of adding a multi vitamin too...I read b vitamins help with tapering.
And I am actually a maker of cakes...I will have to remember that idea!!

Tina...yes...I'm not dead set on my taper...my GI told me to call anytime if we needed to rework. I also switched from Asacol to Lialda...and it is better but not remission. I've tried to do enemas as much as I can...but sometimes this flare isn't having it.

Just hoping hoping hoping for the best...praying for remission too with pred then maintained with lialda and enemas. Remission was so nice...I can't quite remember actually.

Vitamins do not make my colon happy.
I can tolerate fortified rice milk. It's actually better if you heated up and make-believe it's some weird cocoa.

Post Edited (Not Happy Yet!) : 1/12/2015 2:34:03 PM (GMT-7)