First time pred

The 40 mg daily sounds right as a start. I took mine 10 mg 4X to balance dosage over time as it does revv up heart, etc. His recommended taper is very cautious. You'll have to gauge how you do by the 8th day. I was able to drop to 30 mg daily at that point, but I didn't have pancolitis. Hopefully, Fruitgirl will contribute her experience on this as she did extremely well getting off. I had some trouble at 2.5 mg with finally getting off & back onto 5-ASA: some of us do go thru that hurdle, too. You mainly have to watch your symptoms & stay positive. Also, it's good that you're trying to set up with a reliable Indy gastro. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

I hope the prednisone helps you! 10mg every week seems like a lot and you might have a hard time with it. when I got to 20 mg (reducing 5 mg every week or 1.5 weeks), I did 2.5 mg per week after that. I sometimes needed to go back up a little for the agitation/anxiety problems I had on it. It didn't do anything for my UC symptoms so the slow taper wasn't to avoid those coming back.

My experiences with Prednisone - honestly, I would not take 40mg at once your first time on it. I would recommend 20 mg twice a day. My first time with it - I found that I did best on 15mg, 10mg & 15 mg (3 doses 8 hours apart) My second time I did the 20mg twice a day. For me - there are major effects getting onto it... racing heart, burning face, muscle pain, anxiety, trouble concentrating, insomnia, etc.
I'm no Dr, mind you - just my opinion & experience here.

Holy crap. I cant survive on that little sleep.

Honestly, it's not that you have to be REALLY sick to warrant pred, but in my experience, it's a good temporary med. The goal is to get your inflammation low enough that maintenance meds (5ASAs) can work more effectively and get you into remission.

I took hydrocortisone enemas for about 10 days back in early 2011, and I did a week of cortifoam last month. I used to have very bad skin swelling (like, parts of my face, or my hands or feet would just swell up), and my really terrible allergist would just throw pred at me and get irritated when the swelling would worsen after the tapers. During those 1-2 months on pred, I'd gain about 10 lbs, be hungry ALL the time, be a little more tired, and have a lot of trouble sleeping. I'd also be super grouchy, but since I was already grouchy because of the swelling, it wasn't that noticeable.

Since those days, I will refuse to take oral pred for chronic conditions, and my GIs have been great about not asking me to go on it. The hydrocortisone enemas were actually really great--they pushed me into remission in 10 days when Asacol wasn't quite working well enough--and gave me no side effects until day 10, when a black tarry stool scared the heck out of me enough to stop taking them.

GI #3 put me on cortifoam when I stopped responding to Asacol and mesalamine enemas back in December/January of this winter, and it was working pretty well until it hit me with some of the worst insomnia I'd ever experienced. I've since "fired" that doc, and my current one (#4) isn't even bothering with steroids.

This isn't to say that you should be terrified. Talk to your doctor about whether or not it's smart to start you on such a high dose, and why your taper is so long. Honestly, longer tapers are better, but I'm not sure it needs to be that long! In the meantime, just be prepared to be a little grouchier, to gain some weight, to be hungrier, and to take something like Benadryl every night to curb the insomnia.

And in the end, remember that you have the right to 1) have your doctor justify and explain treatments, and 2) refuse those treatments. My old allergist would not do anything except give me pred, no matter how many times I asked for something else, and when I finally found a new doctor, she was able to provide me with a wonderful treatment plan that required only antihistamines, and said it should have been clear to my old doctor that pred was not the right treatment for my illness.

This is my first time on pred also, and I've been on it for just over 2 months now. Started at 40 mg/day, then up to 60, back to 40 and now at 35. (it's a long story) The pred has done nothing at all to help my UC symptoms....but for now I'm still on it b/c no other med has worked either, and my GI thinks if nothing else it could be helping me from getting any worse.

My side effects have been blurry vision, slightly thicker hair on some parts of my body, irregular/faster heart beat...not sure if it's effected my sleep b/c my UC symptoms keep me from sleeping anyway.

I hear pred is very helpful when it does work, so I hope it works for you! Feel better soon :)

Nice! Thanks.

good to hear! I hope it helps me. I am sick of feeling like crap.

Thanks for the info. Sounds scary. I am not a fan of insomnia. Do you guys work out while on pred? I havent been to the gym in a month due to UC.

I averaged 4 hour sleep per night. My first taper I worked out like mad. That remission only lasted a month. This last taper I went slow and tried not to stress my body. In other words...I got lazy!

I was on pred for 2 weeks back in December. I started at 40mg. I regret not taking pred sooner because my symptoms (urgency, blood, diarrhea) have mostly gone away.

While on pred, I had a hard time falling asleep and I sweated quite a bit at night... and not much else in side effects.

Best of health to you.

Oh and I personally get this crazy unquenchable thirst. Water just doesn't do it for me and I refuse to drink sugary stuff like Gatorade etc. so I stock up on bottled or canned coconut water and make my own energy drink : half a can of coconut water, some grape or orange juice for flavor and half a glass of water. Does the trick instantly and provides long lasting thirst quench. I also stir in some VSL3 cause I find it helps a lot once the inflammation has subsided.

I can't wait for you to wake up in the morning and just go! Like leave the house without a second thought again!

Anyway - think and focus on the positive stuff all the time and that's exactly what you'll get.. Euphoria is a common side effect and it gets stronger the more positive you think...

I to, have loved every minute on it, haha...

Later alligator

Mark

Post Edited (Canada Mark) : 2/18/2013 10:31:39 PM (GMT-7)