Going on prednisone for the first time

For me it didn't seem to work until I was finishing up 30mg (I had done two weeks of 40mg first). But I only felt well for a couple of weeks and then started flaring again when I tried to taper off.

First time I took it worked the very next day. Perfect bowel movement. Make sure you don't taper to fast, ask a pharmacist for their tapering schedule. I would start at 50 a day for the first week for a good blast, then 45, 40, 35, 30, 25, 20, 15, 10, 5 as a taper per week.

When I followed this above schedule I didn't have to go back on it (as opposed to a fast taper in which 2 weeks later I needed to go back on it, this happened twice).

I think you will probably see some improvement in the first day or two. Hopefully significant improvement.
But it may take a week or two before you are doing well enough to feel ready to start tapering off.
Assuming you get a good starting dose, like 40 or so.

What kind of work do you do? Do you have health insurance? Some clinics have evening hours, just for people who have work situations like you describe.

I hope you feel better soon.

I had immediate relief, from 10-12 BMs a day to 3-4 and more formed.

I was one of the lucky ones, including taper, I was on pred for 3.5 months and had no side-effects, no mood swings, no ravenous hunger, no moon face, no extra hair and I never has a set back as I was tapering.

I hope you have as much luck as I did!

I saw improvement the next day, and continued to improve. Within a week or so, I was down to 2-4 formed BMs a day - down from 12-15.

Unfortunately, I became symptomatic at around 15-10mg, and went right back into full flare within a few days of being off of it. I tried it 3 times and was never able to taper without symptoms.

That said, there are lots of people who do manage to take it and get off of it without relapsing.

Side effects were pretty minimal with me. I lost a bunch of hair, had a touch of moon face, but really nothing too serious and I was on it for a total of 14 months straight.

Good luck. I love the drug because of how well it worked for me, and wish it wasn't so dangerous to be on it.

I had a course last Fall and one this Winter, each started at 30mg and tapered 5mg every 5 days. But the second taper stopped at 15mg. I've been there 5 weeks, and will stay another 3 until 6MP drugs kick in. I did have some side effects at 30-25 mg. Mood swings, irritability, anxiety, small hand tremors, acne around hairline, puffiness.

It did seriously cut the flare in about 2-3 days, with further improvement over the following week. Not sure I could stand a higher dose.

I am hoping that the combination of Lialda and 6MP will get me into remission. What bleeding I can see seems to be close to the rectum, judging by the bright red color. I understand Lialda does not cover so well in the far left colon. I plan to ask about suppositories or enemas that might target bleeding ulcers right above the rectum. After that I hope probiotics and some diet changes can give me a mostly diahrea and blood free life.

I think when I have to travel, I might consider Prednisone prophylactically - just in case.

First time I took pred I had a normal BM within 24 hours. Don't look into the pred side effects. Just take it and know that you'll prob feel a little hyped up. Good luck!

amandaDC said...
Hi wavefunction,

My first flare was pretty aggressive and when I failed to respond to Asacol, Cipro and Flagyl, my doctor put me on low dose (25 mg) prednisone. At that point, I was extremely weak and essentially bedridden, but within a day or two of starting the pred, my symptoms started to change for the better and I could actually start functioning again. Within a week, I was back at work, which was significant because I had been out for a month. My dosage actually got bumped up to 40 mg several weeks later due to the sorry shape of my colon when I was scoped and I'm now tapering down on the pred while trying to get 6mp to kick in.

Like many others, I have experienced some side effects, the worst, in my opinion, being the crazy mood swings that I've been fortunate to be able to control with anti-anxiety meds. I can't complain too much though...I didn't realize how sick I was until the prednisone turned things around for me. It really was a wonder drug for me. Best of luck--you will have to come and update us on how it works out for you!

Thanks for your informative post and I'm sorry you had to go through it.

I just returned from the doctor's office a few hours ago and have already taken my first dose of prednisone (I'm on 30mg = I take 20mg in the morning and 10mg at night). No side effects yet but I'm sure they'll come. My sister was on prednisone for a few years straight (seriously, for two years straight) and I've had first hand experience with a lot of the side effects. In her case, the facial swelling was particularly noticeable (she was 13 at the time) and the kids at school used to call her "blow fish" or "squirrel" and throw rocks at her. Part of the reason why I pushed the doctor for a lower dose is because I didn't want to have the puffy cheeks. Yes, I'm 26, not 13 however I also will be dealing with kids a lot in the next month and I don't want to be reminded of any visual deformities (my current job is teaching English to adult business people and I'm starting a new job next month teaching at an Elementary).

Way too much personal stuff there. It probably explains why I haven't taken prednisone yet despite having some nasty flare ups.

Anyway, the doctor's visit was a bit of a surprise. My blood work showed very little inflammation (within normal ranges) and everything they tested seems to be normal-ish. I was shocked, I was actually prepared to be admitted right away as my stools are sometimes 30% blood and 60% mucus or even worse. I guess the fact that I've been taking so much medication and so many other things (ie: vitamins) has been slowing the progression down.

The doctor thinks this flare up might be caused by some other infection so if my colon doesn't respond to prednisone, I'm going to go back for a sigmoidoscopy and further treatment after 14 days.

Some of my symptoms are down right weird. I've been having muscle spasms (they've gone away), joint pain that doesn't seem to be limited to my joints (I've felt pain BETWEEN my elbow and my wrist) and some hot and cold feelings in my joints. I ran this by the doctor and he didn't seem concerned. I do have Generalized Anxiety Disorder and have been spending too much time on Google and I also have a sinus infection now so maybe some of these symptoms are related to that or they're just psychosomatic. Who knows.

I'll keep checking in. Thanks for all your support!

Thanks for the advice, everyone. I'm going to look into a low sodium diet in case I notice my cheeks are swelling. I've already begun to experience a few mild side effects, such as indigestion. It doesn't really bother me.

On the bright side, my first post-prednisone stool was well formed with very little blood! It wasn't properly digested but it didn't look lethal like most of my other ones have over the last several days. Glad no one saw me... staring into the toilet and clapping with glee.

Anyway, hope I get the most benefit and the least side effects.

The doctor told me that they don't keep people on prednisone indefinitely anymore like was the case with my sister. He said that if the prednisone doesn't help me that much, he'll switch me onto Remicade. The treatment has changed in the past several years because a little more than a decade ago, my sister was on a high dose of prednisone for two whole years.

EDIT: It's a few hours later. Had another near great BM (well, compared to a remission BM). There was no visible blood and the stool was well formed, albeit green.

I have a question: I'm supposed to be on 30mg of Prednisone but I take 20mg in the morning and 10mg at night. So far I haven't even taken the night time dosage yet (I've only taken 20mg) and it's made a huge difference so... do you think I can ask my doctor to taper down sooner as to avoid some of the side effects? It already seems that 20mg per day will do the job.

Post Edited (Wavefunction) : 3/23/2011 5:33:09 AM (GMT-6)

Two comments that might help you... 1. My blood work came back normal even when I was in terrible flares. Blood work is not a very reliable measure of if or how badly you are flaring. 2. If the 20mg continues to work for you I would just stay at that dosage for a while. I would not try to taper faster because that could make your symptoms return (and they could be worse than they were at first). I would stay at the 20mg for the same amount of time you were told to take 30mg and then also stay on it for the same amount of time you were told to take 20mg...then taper from there as instructed by your doctor. Hope that makes sense. At 20mg you likely will not have as many side-effects unless you are on 20mg for several months straight.

I agree with thatfield's approach. Below 20 is the scary drop. I went 3 weeks on 40, two weeks on 20, then hit ten and all h-ll broke loose and I had to return to 40. I won't go into my second taper, but that failed too. Unfortunately, the longer you are on pred, the longer your doc keeps you on pred.

You can't be too careful when you drop below 20.

Patience, patience. Don't be lulled in to thinking you're fixed when you're taking over 20 mg of pred. It's deceiving and you'll see when things go sideways at lower doses.

Don't read the list of side effects, because it will get into your head that you have them.
Do what you need to do to get well, don't taper too soon.
Be sure to eat bananas or OJ or something with potassium.

I hope it's going well!